As you know, President Obama signed into law health insurance reform legislation in March 2010. The first big events are about to occur, so I wanted to give you a head's up so you'll have accurate information.
First, the federal web portal will go live on July 1st. It will be at www.healthcare.gov. (NOTE: The link won't work until the site goes live on Thursday). When it's fully populated, it will tell you what plans are available to you in your state, what they cost, what they cover -- all the info you need to be able to compare and choose a plan. However, don't expect it to be fully up and running on day one; October 1 is the target date for the portal to have all the information that you will need. But July 1 will be a starting point.
What should be available on July 1 is information about the new Pre-Existing Condition Insurance Plans (PECIP), or what traditionally are known as high risk pools. Under the new law, pre-existing condition exclusions are illegal for children up to age 19 starting at the beginning of the next plan or policy year after September 23, 2010. Thus, if your employer's insurance plan works on a calendar year basis, so your plan year starts on January 1, the prohibition against pre-existing exclusions for children to age 19 is effective on January 1, 2011, the beginning of the plan year following September 23, 2010.
For adults, the rule banning pre-existing condition exclusions does not take effect until 2014. Until then, if you have been without insurance for at least 6 months, and if you can produce evidence that you were turned down for individual insurance due to a pre-existing condition, you will be eligible to enroll in a PECIP, which will cover your pre-existing condition from day one. About 30 states will run their own PECIP; the remaining 20 -- most of which are suing to try to stop the new law from taking full effect -- will allow the federal government to run their PECIP. Premiums will be based on the norm in your state, whereas existing high risk pools tend to be more expensive than the average individual insurance plan.
PECIPs are supposed to begin enrollment on July 1 and coverage on August 1. However, at least some of the states that are running their own PECIP will be delayed a bit; it is no small task to design a whole insurance plan in only three months. I can't tell you what the PECIPs will cover, what (exactly) they will cost, or even what state agency to contact since some states are running them through existing high risk pools and others are organizing them differently. What I can tell you is that, if you can afford the average price of insurance -- not cheap, but not astronomical -- and you haven't had insurance for 6 months, you will qualify . . . IF you get a letter from an insurance company denying you coverage due to a pre-existing condition. So step one is to apply NOW for ANY individual plan, disclose your pre-existing condition on the application, and get that letter turning you down. Once you have that, you will be ready to go when the plan in your state becomes available.
What we believe will be the case with the web portal, then, is that the federal PECIP will be up in some detail on July 1st, along with coverage information, pricing, and instructions on how to sign up in your state. State PECIPs are going to be added as soon as the state has provided the information to the federal government, so in some cases, that will happen on July 1, as well. In addition, the government will be adding information about EVERY SINGLE PLAN available to you in your state. By October 1, you should be able to plug in your zip code and come up with all of your options. This is a very exciting opportunity.
This won't take the place of intelligent shopping. If you read our Comments on the web portal regulations, you know that HHS is still considering how much detail to put on the web portal. Consumer advocates like Advocacy for Patients, in partnership with Lybba, are urging HHS to provide as much information as possible. but the web portal -- like most aspects of early health reform implementation -- is a work in progress.
Still, even if all the i's aren't dotted and the t's aren't crossed, July 1st will be a big day for health reform. Keep checking back here; as always, we'll provide you with information as it becomes available. Jennifer
Tuesday, June 29, 2010
Comments on Regulations on Pre-Existing Conditions, Litetime and Annual Caps, and Patient Protections
Dear Sir/Madam:
Thank you for this opportunity to comment on interim final rules implementing sections of the Patient Protection and Affordable Care Act sections 2704 relating to preexisting condition exclusions; 2711 relating to lifetime and annual limits on benefits; 2712 relating to rescissions; and 2719A relating to patient protections.
Advocacy for Patients with Chronic Illness, Inc. is a 501(c)(3) tax exempt organization that provides free information, advice, and advocacy services to patients with chronic illnesses nationwide. Of particular relevance here, we assist people with chronic illnesses to find health insurance that covers their pre-existing conditions, appeal insurance company denials of coverage, including denials of coverage for out-of-network emergency services, reverse rescissions, and strategize around lifetime and annual limits on benefits. Based on our experience working with thousands of patients nationwide, we are uniquely qualified to comment on the interim final rules.
Lybba is a 501(c)(3) tax exempt internet-based platform whose work intersects across three areas: translational research – speeding the adoption of laboratory and clinical insights through more effective collaboration, data exploration, and pattern analysis; patient empowerment – improving people’s ability to choose the best care for themselves through access to the most helpful people and information; and clinical improvement – improving quality of care and reducing costs through better understanding of one’s own practice and how it compares with other practices.
It is from these perspectives that we offer the following comments.
As a whole, we are heartened by the interim final rules. 29 C.F.R. § 2590.701-2704. The regulatory implementation of the statutory elimination of pre-existing condition exclusions beginning in 2014, and beginning at the start of the next plan or policy year after September 23, 2010 for individuals under age 19, is a milestone for the consumers we serve, all of whom by definition have pre-existing conditions. We cannot overstate the importance of this change in the law.
Similarly, the regulatory implementation of the statutory elimination of lifetime and annual limits on benefits in 29 C.F.R. § 2590.715.2711 will have tremendous significance for patients with chronic illnesses, many of whom have had to change jobs repeatedly due solely to a limitation on benefits. In particular, we applaud the implementation of the U.S. Department of Labor phase-out of annual limits between now and 2014, when such limits will be banned entirely. As discussed in great depth in the preamble to the rules, the minimum annual limits for plan or policy years beginning on September 23, 2010, September 23, 2011, and September 23, 2012 are sufficient to protect patients without unduly burdening plans and issuers of insurance.
We do wish to offer one suggestion, however. The section of the rules that pertains to cost-sharing requirements for out-of-network emergency services provides that plans and issuers must pay out-of-network providers an amount equal to the greater of the median in-network reimbursement rate, the reasonable and customary reimbursement rate, or the Medicare rate for such services. 29 C.F.R. §§ 2590.715-2719A(b)(3)(i)(A), (B) and (C). As a general rule, consumers do not have access to information regarding reimbursement rates. We repeatedly have attempted to challenge an insurer’s representation of the reasonable and customary rate for out-of-network services. Other than pointing to the particular out-of-network provider’s usual and customary rate, we have been unable to locate data that would assist us to demonstrate that the insurer’s representation of usual and customary rates is unreasonably low. This problem has been well documented. See, e.g., “A Rip Off by Health Insurers?” New York Times Editorial (February 18, 2008). We therefore recommend that the Departments consider ways in which consumers might be better informed regarding reimbursement rates so that they can enforce these rules.
At the very least, we believe that, in any explanation of benefits relating to out-of-network emergency services, the insurer should have to disclose (1) the median rate; (2) the usual and customary rate; and (3) the Medicare rate. In addition, upon request, a consumer should be provided with data supporting these rates, and the explanation of benefits should inform consumers that they have a right to request such data. If the rules regarding cost-sharing for out-of-network emergency services are to have teeth, the playing field between consumers and plans/issuers must be leveled. By requiring disclosure of ratesetting data, the cost-sharing requirements would be strengthened significantly without overly burdening insurers, who, under the rules, will have to have such data at hand, making disclosure nothing more than a ministerial act.
Again, notwithstanding this one suggestion, we wish to register our support for the approach taken in the interim rules. Thank you for allowing us to comment on these critical reforms. We are confident that they will greatly enhance the lives and the health of the thousands of patients we serve.
Sincerely,
Jennifer C. Jaff, Esq.
Executive Director
Advocacy for Patients with Chronic Illness
18 Timberline Drive
Farmington, CT 06032
(860) 674-1370
http://www.advocacyforpatients.org
Jesse Dylan
Founder
Lybba
8330 West 3rd Street
Los Angeles, CA 90048
(323) 653-2300
http://www.lybba.org
Thank you for this opportunity to comment on interim final rules implementing sections of the Patient Protection and Affordable Care Act sections 2704 relating to preexisting condition exclusions; 2711 relating to lifetime and annual limits on benefits; 2712 relating to rescissions; and 2719A relating to patient protections.
Advocacy for Patients with Chronic Illness, Inc. is a 501(c)(3) tax exempt organization that provides free information, advice, and advocacy services to patients with chronic illnesses nationwide. Of particular relevance here, we assist people with chronic illnesses to find health insurance that covers their pre-existing conditions, appeal insurance company denials of coverage, including denials of coverage for out-of-network emergency services, reverse rescissions, and strategize around lifetime and annual limits on benefits. Based on our experience working with thousands of patients nationwide, we are uniquely qualified to comment on the interim final rules.
Lybba is a 501(c)(3) tax exempt internet-based platform whose work intersects across three areas: translational research – speeding the adoption of laboratory and clinical insights through more effective collaboration, data exploration, and pattern analysis; patient empowerment – improving people’s ability to choose the best care for themselves through access to the most helpful people and information; and clinical improvement – improving quality of care and reducing costs through better understanding of one’s own practice and how it compares with other practices.
It is from these perspectives that we offer the following comments.
As a whole, we are heartened by the interim final rules. 29 C.F.R. § 2590.701-2704. The regulatory implementation of the statutory elimination of pre-existing condition exclusions beginning in 2014, and beginning at the start of the next plan or policy year after September 23, 2010 for individuals under age 19, is a milestone for the consumers we serve, all of whom by definition have pre-existing conditions. We cannot overstate the importance of this change in the law.
Similarly, the regulatory implementation of the statutory elimination of lifetime and annual limits on benefits in 29 C.F.R. § 2590.715.2711 will have tremendous significance for patients with chronic illnesses, many of whom have had to change jobs repeatedly due solely to a limitation on benefits. In particular, we applaud the implementation of the U.S. Department of Labor phase-out of annual limits between now and 2014, when such limits will be banned entirely. As discussed in great depth in the preamble to the rules, the minimum annual limits for plan or policy years beginning on September 23, 2010, September 23, 2011, and September 23, 2012 are sufficient to protect patients without unduly burdening plans and issuers of insurance.
We do wish to offer one suggestion, however. The section of the rules that pertains to cost-sharing requirements for out-of-network emergency services provides that plans and issuers must pay out-of-network providers an amount equal to the greater of the median in-network reimbursement rate, the reasonable and customary reimbursement rate, or the Medicare rate for such services. 29 C.F.R. §§ 2590.715-2719A(b)(3)(i)(A), (B) and (C). As a general rule, consumers do not have access to information regarding reimbursement rates. We repeatedly have attempted to challenge an insurer’s representation of the reasonable and customary rate for out-of-network services. Other than pointing to the particular out-of-network provider’s usual and customary rate, we have been unable to locate data that would assist us to demonstrate that the insurer’s representation of usual and customary rates is unreasonably low. This problem has been well documented. See, e.g., “A Rip Off by Health Insurers?” New York Times Editorial (February 18, 2008). We therefore recommend that the Departments consider ways in which consumers might be better informed regarding reimbursement rates so that they can enforce these rules.
At the very least, we believe that, in any explanation of benefits relating to out-of-network emergency services, the insurer should have to disclose (1) the median rate; (2) the usual and customary rate; and (3) the Medicare rate. In addition, upon request, a consumer should be provided with data supporting these rates, and the explanation of benefits should inform consumers that they have a right to request such data. If the rules regarding cost-sharing for out-of-network emergency services are to have teeth, the playing field between consumers and plans/issuers must be leveled. By requiring disclosure of ratesetting data, the cost-sharing requirements would be strengthened significantly without overly burdening insurers, who, under the rules, will have to have such data at hand, making disclosure nothing more than a ministerial act.
Again, notwithstanding this one suggestion, we wish to register our support for the approach taken in the interim rules. Thank you for allowing us to comment on these critical reforms. We are confident that they will greatly enhance the lives and the health of the thousands of patients we serve.
Sincerely,
Jennifer C. Jaff, Esq.
Executive Director
Advocacy for Patients with Chronic Illness
18 Timberline Drive
Farmington, CT 06032
(860) 674-1370
http://www.advocacyforpatients.org
Jesse Dylan
Founder
Lybba
8330 West 3rd Street
Los Angeles, CA 90048
(323) 653-2300
http://www.lybba.org
What happens when doctors get sick?
Read this. I found it fascinating.
I'll never forget standing on line in a lab one day patiently waiting my turn when Dr. Jeffrey Nestler shot to the front of the line and demanded that he be cared for immediately. He became increasingly agitated and exasperated. Finally, I caught his eye and said "now you know what your patients go through." I don't think he stopped and thought for a second.
I don't wish anybody ill, but I don't think it's an entirely bad thing for doctors to have to be patients once in awhile. Jennifer
I'll never forget standing on line in a lab one day patiently waiting my turn when Dr. Jeffrey Nestler shot to the front of the line and demanded that he be cared for immediately. He became increasingly agitated and exasperated. Finally, I caught his eye and said "now you know what your patients go through." I don't think he stopped and thought for a second.
I don't wish anybody ill, but I don't think it's an entirely bad thing for doctors to have to be patients once in awhile. Jennifer
Free Drugs
We help patients every day find their medication for free through patient assistance programs. So it seems only right to recognize the companies who give the most away. Without these programs, the uninsured would have no medicine. I'm grateful that pharmaceuticals do this. I'm not saying they're perfect, but I am saying that they do a good thing with these programs. Jennifer
Should Patients Rush to Experimental Treatment
Would you? Read about an experimental treatment for MS here. I don't know. Part of me says try anything and everything. Part of me says practice on somebody else. What do you think? Jennnifer
Monday, June 28, 2010
Talkin' 'Bout Guts
My interview with Dan Weatherogg of Talkin' 'Bout Guts is here. It starts about 8 minutes in. Jennifer
More on High Risk Pools
The NY Times provides more information on high risk pools here. Check out the info I provided below. When there's more really new information later in the week, I will let you know. Jennifer
Senator Robert Byrd
Senator Robert Byrd, champion of the little guy and longest serving member of Congress, has died. RIP to a real hero. Jennifer
Saturday, June 26, 2010
Pre-Existing Condition Insurance Plans
The NY Times describes the new plans here. However, they are missing some important info. So here's what I have to add:
First, they are going to be called pre-existing condition insurance plans, to distinguish them from existing high risk pools.
Second, the HHS web portal will be at Healtcare.gov, not at the HHS website (although I suspect there will be a link on the HHS website).'
Third, if people want to know what their state is doing -- whether their state is operating their own pool or letting the feds do it -- you can go here http://www.ncsl.org/default.aspx?tabid=14329 -- scroll down to the map.
Next, people have to be without insurance for 6 months to qualify. In addition -- and this is important -- HHS says they must produce evidence that they were turned down for insurance due to a pre-existing condition. So you are going to have to jump through that hoop of applying for a policy that they know they won't get. Since time is of the essence, you should be doing that now.
The pools will be taking applications in July for (hopefully) an August 1 coverage date. So if you don't have insurance and you want to be part of this program, get moving now. Jennifer
The pools will be taking applications in July for (hopefully) an August 1 coverage date. So if you don't have insurance and you want to be part of this program, get moving now. Jennifer
Friday, June 25, 2010
What to Eat When You're Sick
I just got an email with a great link to a piece on the 15 best things to eat when you're sick as a dog. This isn't about dieting, and which suggestions you want to try out may depend on what kind of sick you are (for example, they suggest nuts and beans, which would be a bad idea if you have a gastrointestinal illness). But this is a very sensible list. Enjoy! Jennifer
Senate Gives Up
After the jobs bill failed in the Senate one more time, it appears that the Democrats have given up. No COBRA subsidy, no unemployment benefits, no aid to states for Medicaid. Even the 21% cut to Medicare physician rates seems to be unalterable.
There's something intensely undemocratic about a minority of Senators being able to filibuster when a majority of Senators favor something. Angry. Frustrated. Mostly sad for the folks who really needed this help. Jennifer
There's something intensely undemocratic about a minority of Senators being able to filibuster when a majority of Senators favor something. Angry. Frustrated. Mostly sad for the folks who really needed this help. Jennifer
Thursday, June 24, 2010
Me on WebMD
Noted author and chronic illness expert Richard Cohen interviewed me for WebMD. A transcript of the interview is here. Jennifer
Weight
The time has come -- finally -- for me and my therapist to talk about my weight. I've been fat since the day I was born at 9 pounds 12 ounces. There's a picture of me from a summer camp. We had picked fresh blueberries and made blueberry jam. In my mind (not sure of the reality -- have to find the picture), I have blueberry jam all over my face and hands. Jenni jelly Jaff, someone called me.
My mom was really thin and very appearance conscious. My dad was fat (with occasional shedding of the weight, only to be re-gained) until the past 10 or so years, when he took control of his eating and went low carb. My brother has always been fat, too, except for when he's been good about his carbs. I've lost a lot of weight, once getting down to where I should be, and once getting close. It didn't last. The first time, I was living in Miami and swam 100 laps a day and worked very reasonable hours -- my Crohn's was far better controlled then, and my diet was simple -- I ate once a day, anything I wanted. It worked then. It wouldn't work now. I'm a lot older now, I work crazy hours, I don't have the great weather to allow me to swim outside every day. The second time I lost a bunch of weight was more recent, but it was because I was deathly ill, so that really doesn't count.
It's difficult for me to diet. I can't eat fresh fruits or vegetables, whole grains, beans, nuts, milk products, beef for the most part (I can eat it if it's in tiny pieces, but no ground beef at all). I can manage chicken, but I don't like fish except for shrimp and lobster, both of which make me sick, so that's out. Eggs are my best form of protein. All of this gives me a great excuse to eat whatever I want. Indeed, there are times when I'm so sick that the doctors tell me to eat anything I can manage to get down and keep down. So that adds to my challenges.
But all of those practical problems can be overcome if I had the will to take control of this situation. I eat the way I eat because it's how my family taught me to eat. We would go to McDonald's and buy fries to eat on the way home in addition to the fries we would eat when we got home. We would go to Dunkin' Donuts and buy a dozen donuts and sit around and eat them all. We would go to Baskin Robbins and buy four pints of ice cream and sit on my parents' bed and eat them right out of the containers, passing them around. When my mother had to drive a long distance and was phobic about it, she would bribe me and my friend Margy with hot fudge sundaes. Margy's mother told her to stop doing that to her daughter, but nobody stopped my mom from doing it to me.
My mom fed me with one hand and was horrible towards me for being fat on the other. For a long time, she wouldn't let me wear jeans to school and she took me shopping at fat stores. Lane Bryant was nowhere near what it is today. The clothes were matronly polyester --just awful. My parents sent me to fat camp one summer, too. I got mono and had to come home early.
My weight has always been an issue, and it's no secret that I've been in an out of therapy for a lot of years to deal with a whole host of issues, from family to illness. In all this time, we've danced around my weight. But I've not been feeling well at all lately, and finally my shrink brought up the subject. Indeed, she's been more assertive about this than anything we've ever talked about. She said I play such games with myself on this issue that she felt a need to cut through it. She said that the way I was fed is nothing short of neglect. And the way I eat now is nothing short of neglecting myself. I'm trying those words on for size, if you know what I mean. She knows me incredibly well, so she's probably right. I know I eat how I eat because it's how I've always eaten. I know it's about my childhood, a last vestige of ties to my parents. I know it's unhealthy, for sure. And I know I can't be the person I want to be when I'm like this. I know I need to get ahold of this somehow, to take responsibility for what I put in my mouth. I know all that is true. The word "neglect" feels harsh, but maybe not too harsh under the circumstances. As I inch my way past 250 pounds -- I can't believe I'm saying that in public, but there it is -- I know I cannot be the person I want to be like this.
The person I want to be takes responsibility for herself, and does all she can to be as healthy as possible. I can't preach patient participation in care management when I let such a big aspect of my care run wild. I can't be the role model for people with chronic illnesses when I'm such a bad role model.
Obesity is a big part of chronic illness. I don't meet my clients so I don't know if they're overweight, but I'm often surprised to get a medical chart and see that the person is even bigger -- fatter is the word I don't want to use -- than I am. We know that diabetics struggle with obesity and that obesity can cause diabetes. But what about gastroparesis? How is it that so many patients who can't eat at all are so overweight, like me? And Crohn's patients tend to be either very thin or very fat. A diet that consists of nothing but carbs and sugar will do that to you. But so will simply not making an effort.
So I am going to make the effort. It is going to be a huge challenge. There's the psychological piece that I know my wonderful shrink will help me with. And there's the practical piece, which I have to figure out for myself, but I can and I will. It's time. I've grown so much as a person. I'm doing great work. I'm important to a lot of people. It's time I took responsibility for my health fully and actively.
Saying all of this out loud, in public, is an important first step.
Anybody want to join me? Jennifer
My mom was really thin and very appearance conscious. My dad was fat (with occasional shedding of the weight, only to be re-gained) until the past 10 or so years, when he took control of his eating and went low carb. My brother has always been fat, too, except for when he's been good about his carbs. I've lost a lot of weight, once getting down to where I should be, and once getting close. It didn't last. The first time, I was living in Miami and swam 100 laps a day and worked very reasonable hours -- my Crohn's was far better controlled then, and my diet was simple -- I ate once a day, anything I wanted. It worked then. It wouldn't work now. I'm a lot older now, I work crazy hours, I don't have the great weather to allow me to swim outside every day. The second time I lost a bunch of weight was more recent, but it was because I was deathly ill, so that really doesn't count.
It's difficult for me to diet. I can't eat fresh fruits or vegetables, whole grains, beans, nuts, milk products, beef for the most part (I can eat it if it's in tiny pieces, but no ground beef at all). I can manage chicken, but I don't like fish except for shrimp and lobster, both of which make me sick, so that's out. Eggs are my best form of protein. All of this gives me a great excuse to eat whatever I want. Indeed, there are times when I'm so sick that the doctors tell me to eat anything I can manage to get down and keep down. So that adds to my challenges.
But all of those practical problems can be overcome if I had the will to take control of this situation. I eat the way I eat because it's how my family taught me to eat. We would go to McDonald's and buy fries to eat on the way home in addition to the fries we would eat when we got home. We would go to Dunkin' Donuts and buy a dozen donuts and sit around and eat them all. We would go to Baskin Robbins and buy four pints of ice cream and sit on my parents' bed and eat them right out of the containers, passing them around. When my mother had to drive a long distance and was phobic about it, she would bribe me and my friend Margy with hot fudge sundaes. Margy's mother told her to stop doing that to her daughter, but nobody stopped my mom from doing it to me.
My mom fed me with one hand and was horrible towards me for being fat on the other. For a long time, she wouldn't let me wear jeans to school and she took me shopping at fat stores. Lane Bryant was nowhere near what it is today. The clothes were matronly polyester --just awful. My parents sent me to fat camp one summer, too. I got mono and had to come home early.
My weight has always been an issue, and it's no secret that I've been in an out of therapy for a lot of years to deal with a whole host of issues, from family to illness. In all this time, we've danced around my weight. But I've not been feeling well at all lately, and finally my shrink brought up the subject. Indeed, she's been more assertive about this than anything we've ever talked about. She said I play such games with myself on this issue that she felt a need to cut through it. She said that the way I was fed is nothing short of neglect. And the way I eat now is nothing short of neglecting myself. I'm trying those words on for size, if you know what I mean. She knows me incredibly well, so she's probably right. I know I eat how I eat because it's how I've always eaten. I know it's about my childhood, a last vestige of ties to my parents. I know it's unhealthy, for sure. And I know I can't be the person I want to be when I'm like this. I know I need to get ahold of this somehow, to take responsibility for what I put in my mouth. I know all that is true. The word "neglect" feels harsh, but maybe not too harsh under the circumstances. As I inch my way past 250 pounds -- I can't believe I'm saying that in public, but there it is -- I know I cannot be the person I want to be like this.
The person I want to be takes responsibility for herself, and does all she can to be as healthy as possible. I can't preach patient participation in care management when I let such a big aspect of my care run wild. I can't be the role model for people with chronic illnesses when I'm such a bad role model.
Obesity is a big part of chronic illness. I don't meet my clients so I don't know if they're overweight, but I'm often surprised to get a medical chart and see that the person is even bigger -- fatter is the word I don't want to use -- than I am. We know that diabetics struggle with obesity and that obesity can cause diabetes. But what about gastroparesis? How is it that so many patients who can't eat at all are so overweight, like me? And Crohn's patients tend to be either very thin or very fat. A diet that consists of nothing but carbs and sugar will do that to you. But so will simply not making an effort.
So I am going to make the effort. It is going to be a huge challenge. There's the psychological piece that I know my wonderful shrink will help me with. And there's the practical piece, which I have to figure out for myself, but I can and I will. It's time. I've grown so much as a person. I'm doing great work. I'm important to a lot of people. It's time I took responsibility for my health fully and actively.
Saying all of this out loud, in public, is an important first step.
Anybody want to join me? Jennifer
Requiem for the COBRA Subsidy
Well, it looks like the jobs bill -- including the COBRA subsidy, extension of unemployment benefits, aid to states for Medicaid, and the postponement of the 21% cut in Medicare rates to doctors -- is stuck in the political mud, according to HuffPo. They're not even talking about the COBRA subsidy any more. We will be discussing what to do if you are unemployed and not receiving the COBRA subsidy in our next newsletter. If you'd like to be on the list to get our newsletter, send your email address to patient_advocate@sbcglobal.net and we'll add you to the list. Jennifer
Wednesday, June 23, 2010
New Health Reform Regulations
President Obama met with insurance officials yesterday (including the illustrious Kevin Lembo, Connecticut's state Healthcare Advocate). He warned insurers not to use the new law as an excuse for increasing premiums, and he issued new regulations banning lifetime caps on benefits, restricting annual caps on benefits, banning rescission (cancellations of policies except in cases of fraud), and eliminating pre-existing condition exclusions for kids under age 19. More info here. Once we've had a chance to review the regulations, we'll provide our detailed comments for your review. Jennifer
Tuesday, June 22, 2010
A Model for the Nation
A model for the nation, Geisinger Health System in Pennsylvania pays primary care providers more to coordinate care for complex patients with chronic illnesses. Some find it intrusive when insurers call and help coordinate care, but what if it's a nurse associated with your doctor's office whose salary is paid for by an insurance company? When they call to help you find less expensive medicine, is their call welcome? If done right -- if not punitive -- I think real care management can be a great help to patients and a great cost saving to insurers. Jennifer
NY Times Negates Value of Insurance Appeals
My friends at the NY Times have gotten it all wrong again. Today, in an article about the expansion of appeal rights under health reform, they portray the new law as not making that great a change since most consumers don't know that they have a right to appeal or have the ability to appeal because most lawyers won't take these cases. Um . . . I'm here (waving madly). We do free insurance appeals, and we win all the time -- not 100% of the time, but 85-90%. Who's the NY Times talking to, and why do they knock one of the best consumer advances to come from the new health reform law? Jennifer
Dr. Berwick and Rationing
Republican Senators are opposing the nomination of Donald Berwick to head the Centers for Medicare and Medicaid on the ground that he is in favor of rationing care. Does anybody believe care isn't being rationed today? When an insurance company decides to let one patient have a certain treatment and not another, isn't that rationing? So my patient with occipital neuralgia who can't get approved for an occipital nerve stimulator, the 38 year old who couldn't get a heart transplant (who finally got approved), the patients who can't get the gastric electrical stimulator, patients who call every day about a medication they can't get -- is that not rationing? I'd rather have a man with a heart and an inspiring sense of right and wrong in charge than a nameless, faceless insurance bureaucrat. Dr. Berwick stands for a lot more than rationing. His Institute for Healthcare Improvement is a trailblazer.
This is about the Republicans hating health reform, not about Dr. Berwick. But since it's his confirmation hearing, it should be about him. Let's focus on the great things he has done and will do for healthcare in America. Jennifer
This is about the Republicans hating health reform, not about Dr. Berwick. But since it's his confirmation hearing, it should be about him. Let's focus on the great things he has done and will do for healthcare in America. Jennifer
Obama Warns Against Rate Hikes
Insurers continue their trend of double digit rate hikes. This time, though, the President is watching and says he will help states keep this from happening. I sure hope so. Our insurance is already pushing the limit, and I'm sure yours is too. Jennifer
Friday, June 18, 2010
Senate Stuck in the Budget Mud
The Senate today passed a bill that postpones the 21% cut in Medicare rates to doctors, failing to act on unemployment or the COBRA subsidy or aid to states for Medicaid.
Let's hope they do something for the unemployed next week. J
Let's hope they do something for the unemployed next week. J
Thursday, June 17, 2010
High Risk Pool Update
As you know, high risk pools to help provide insurance coverage for people who have pre-existing conditions and have been without coverage for six months are to be opened for enrollment on July 1 and start covering people on August 1. The federal government reportedly has given states to June 25 to tell the feds how the state will satisfy this requirement. Twenty-nine states will run their own pools, with the remaining states leaving it to the federal government to set up a pool. The new reform law has allocated only $5 billion to pay for these pools from now until 2014. Many states (and people like me) are concerned that this is not anywhere near enough money to meet the need since, even though these pools will charge a premium to enrollees, the premiums will not cover the cost of these high-cost patients (like me).
To see whether your state has agreed to run its own pool or leave it to the feds, go here.
I'll keep you up to date on this as information becomes available. Jennifer
To see whether your state has agreed to run its own pool or leave it to the feds, go here.
I'll keep you up to date on this as information becomes available. Jennifer
COBRA Subsidy Update
Well, it appears from all indications that the COBRA subsidy will not be extended further. Yesterday, in a test vote, the Senate fell 15 votes short of cutting off debate for a jobs bill that extends unemployment, delays the 21% decrease in Medicare payments to doctors, and extends aid to states for Medicaid costs due to the recession. The COBRA subsidy wasn't even in it. Now, the Senate is going to cut the bill further to satisfy the deficit hawks in their own party, as well as a couple of moderate Republicans, in an effort to get something done.
This is a disaster. I'm already getting calls from people who can't afford their COBRA premiums without the subsidy, and if they don't exhaust their COBRA, they will not be "HIPAA eligible" for a health insurance policy that will cover their pre-existing condition.
Does it really make sense to be driven by the deficit to increase the ranks of the uninsured by hundreds of thousands of people? I say no way.
But it's not over 'til it's over, so please contact your member of Congress today. For contact information for the House, go here. For the Senate, go here. If you want a template for what to say, see below, back about a week ago. Jennifer
This is a disaster. I'm already getting calls from people who can't afford their COBRA premiums without the subsidy, and if they don't exhaust their COBRA, they will not be "HIPAA eligible" for a health insurance policy that will cover their pre-existing condition.
Does it really make sense to be driven by the deficit to increase the ranks of the uninsured by hundreds of thousands of people? I say no way.
But it's not over 'til it's over, so please contact your member of Congress today. For contact information for the House, go here. For the Senate, go here. If you want a template for what to say, see below, back about a week ago. Jennifer
Addressing the Shortage in Primary Care
Much has been said (see below) about the shortage of primary care professionals -- something that is critical to people with chronic illnesses. Yesterday, the Department of Health and Human Services announced that it will spend $250 million on programs designed to increase the number of primary care doctors, nurses, and other health professionals. This includes $168 million to train 500 new primary care doctors, $30 million to encourage 600 nursing students to attend school full-time and complete their degrees, and $32 million to train 600 new physicians assistants. Although this is a small step, it is the first step in the right direction. Projections are that there will be shortage of anywhere from 21,000 to 47,000 primary care professionals in 2020 if we don't do anything to address this workforce shortage. Jennifer
Tuesday, June 15, 2010
Grandfathered Plans continued
As reported yesterday, the government issued regulations restricting the ability of "grandfathered" health plans to make changes to their plans if they want to retain their exemption from the new health reform law. The way the law works, certain changes that will take effect in 2014, such as the minimum benefits package, will not apply to plans that exist on the date of passage of the law (i.e., grandfathered plans, or plans that are grandfathered under the Act). These plans still have to comply with certain aspects of the new law, such as the elimination of lifetime caps on benefits, but there would be major changes from which these plans would be exempt.
The rules that came out yesterday warned employers not to increase the costs or greatly decrease benefits between now and 2014 if they want to hold onto their exempt grandfathered status, as explained by Huffington Post here. The idea is to make it clear that the exemption only applies if the plan doesn't change a whole lot to the detriment of employees. Employers can improve coverage if they want without losing the exemption, but they can't decrease coverage and increase costs beyond certain limits.
The rules are 121 pages long, so I haven't finished reading them. If there's anything really exciting in them, we'll write comments and post them here. If you have any questions, ask! Jennifer
The rules that came out yesterday warned employers not to increase the costs or greatly decrease benefits between now and 2014 if they want to hold onto their exempt grandfathered status, as explained by Huffington Post here. The idea is to make it clear that the exemption only applies if the plan doesn't change a whole lot to the detriment of employees. Employers can improve coverage if they want without losing the exemption, but they can't decrease coverage and increase costs beyond certain limits.
The rules are 121 pages long, so I haven't finished reading them. If there's anything really exciting in them, we'll write comments and post them here. If you have any questions, ask! Jennifer
Study on Minority Medical School Grads
An interesting study found that graduates of minority medical schools are more likely to practice primary care medicine, where there's a huge shortage nationwide. In light of the shortage of primary care physicians, this is great news -- and other medical schools ought to look at these models to see why these students are prepared to fill this dire need, whereas grads from other schools are not. Jennifer
Unions Push for COBRA Subsidy
As reported here, unions are pressing for extension of unemployment and the COBRA subsidy.
Perhaps there's still hope? Jennifer
Perhaps there's still hope? Jennifer
Transition Slowly?
Fascinating. The concern voice here is that insurers will leave the individual markets in some states if they have to spend a certain percentage of premium dollars on health care (remember discussion of "medical loss ratios" below?). So if they can't make more of a profit, they will just leave the market? Isn't this as strong an argument as you can imagine for having a public option? If private insurers only want to participate in the market if they can price gouge, then shouldn't we say "bye-bye" to them and have a more efficient, government plan?
The National Association of Insurance Commissioners is urging a gradual transition to the new medical loss ratios. I think this is all bunk. Especially in light of the evidence (cited in past posts) that insurers are going to try to include all kinds of things that don't contribute to health care -- like fighting coverage denials -- in the medical loss ratio, I have a hard time feeling sorry for the individual insurers who already are charging upwards of $900 per month. Of course, we do have to worry about consumers if insurers leave the private market, limiting the options available to individuals. But again, my solution would be to create government-sponsored plans rather than to allow insurers to keep spending so much of our premium dollars on administrative costs and profits. Jennifer
The National Association of Insurance Commissioners is urging a gradual transition to the new medical loss ratios. I think this is all bunk. Especially in light of the evidence (cited in past posts) that insurers are going to try to include all kinds of things that don't contribute to health care -- like fighting coverage denials -- in the medical loss ratio, I have a hard time feeling sorry for the individual insurers who already are charging upwards of $900 per month. Of course, we do have to worry about consumers if insurers leave the private market, limiting the options available to individuals. But again, my solution would be to create government-sponsored plans rather than to allow insurers to keep spending so much of our premium dollars on administrative costs and profits. Jennifer
The Uninsured are Less Healthy
According to the New York Times, the uninsured are at higher risk of illness and death even in hospitals, where their uninsured status shouldn't matter.
More reasons to strive for universal coverage. J
More reasons to strive for universal coverage. J
Monday, June 14, 2010
James Taylor and Carole King Troubador Reunion
I had the best birthday ever, largely because of the incredible show put on by James Taylor and Carole King. With their original band of Leland Sklar, Danny "Kootch" Kortchmar, and Russ Kunkel, they rocked the house for nearly three hours. I bought myself the birthday gift of a VIP Stage Seat through Tickets-for-Charity -- first row, plus access to the sound check and a "meet and greet" where James, Carole and the band signed autographs ("Happy Birthday Jennifer" on mine). It was a great night. The Stage Seats are amazing and worth every penny.
If you'd like to see what the show looked like from first row, my photo album is here. Enjoy! Jennifer
If you'd like to see what the show looked like from first row, my photo album is here. Enjoy! Jennifer
Paying People to Take Their Medicine
A new trend would pay patients to remember to take their medicine and otherwise comply with treatment regimens. Does it really take "bribery" to convince people to take their medicine? I understand that we may have to provide financial assistance to people who can't afford their medicine, but isn't feeling better and staying out of the hospital enough of an incentive for most people to follow doctor's orders? Perhaps not, according to this recent trend.
I don't get it. Being in the hospital is awful. Being sick is awful. I don't need to be convinced to take care of myself. I don't want to believe that it takes paying people to get them to care for themselves.
Am I wrong? Jennifer
I don't get it. Being in the hospital is awful. Being sick is awful. I don't need to be convinced to take care of myself. I don't want to believe that it takes paying people to get them to care for themselves.
Am I wrong? Jennifer
New Rules Will Restrict Changes in Health Insurance
According to the New York Times, the White House will issue regulations today restricting the extent to which health insurance plans can be changed if employers want those plans to be "grandfathered" in under the health reform laws, which would exempt them from many of the changes to take effect in 2014. If the plans reduce benefits or increase deductibles and copays dramatically, they will not be exempt from the changes to the plans -- and, in particular, the minimum benefits package requirements -- that will take effect in 2014. These regulations apply only to large group plans, i.e., plans with more than 100 employees. Jennifer
Sunday, June 13, 2010
More on COBRA Subsidy
It's a mini-roller coaster ride here, with the Associated Press now saying an extension of the COBRA subsidy past June 1 is dead. For people who already started receiving it, you will still receive the 15 months. But if you lose your job after May 31, there may not be a subsidy for you.
Hang in, though -- it's not over till it's over. Anything can happen with Congress in the mix. J
Hang in, though -- it's not over till it's over. Anything can happen with Congress in the mix. J
Friday, June 11, 2010
COBRA Subsidy Not Dead Yet?
According to Kaiser Health News, Senate Democrats continue to push for an extension of the COBRA subsidy retroactive to June 1. Kaiser cites the Wall Street Journal, which indeed reports that the COBRA subsidy is still in play -- but Senate Majority Leader Harry Reid and other Democrats who support an extension of the COBRA subsidy are not prepared to commit that the COBRA subsidy will come up for a vote any time soon.
Um, it's been 11 days since the subsidy expired, along with unemployment benefits. That means there are hundreds of thousands of people who may now be allowing their COBRA to lapse because they can't foot the entire bill. So when they show up at the emergency room, they will be treated as if they have no insurance.
What the heck is taking so long? This is a no-brainer! I get that the deficit continues to increase because the federal government is supporting people who are involuntarily unemployed through unemployment benefits and the COBRA subsidy, not to mention aid to states to cover increases in Medicaid due to the recession. But if what's really driving this is the deficit, why are Republicans trying to add funding for programs to explore medical malpractice reform in this same bill? It's okay to deficit spend on behalf of doctors who can afford the status quo but it's not okay to deficit spend on behalf of people who have lost their jobs and their health insurance? (Not to mention the money we are deficit spending fighting two wars that appear to be unwinnable and unending).
If you haven't called your members of Congress yet to vent about this, shame on you. If you need contact information for members of the House, go here. If you need contact information for the Senate, go here.
This is not about politics, folks. This is about life and death. Jennifer
Um, it's been 11 days since the subsidy expired, along with unemployment benefits. That means there are hundreds of thousands of people who may now be allowing their COBRA to lapse because they can't foot the entire bill. So when they show up at the emergency room, they will be treated as if they have no insurance.
What the heck is taking so long? This is a no-brainer! I get that the deficit continues to increase because the federal government is supporting people who are involuntarily unemployed through unemployment benefits and the COBRA subsidy, not to mention aid to states to cover increases in Medicaid due to the recession. But if what's really driving this is the deficit, why are Republicans trying to add funding for programs to explore medical malpractice reform in this same bill? It's okay to deficit spend on behalf of doctors who can afford the status quo but it's not okay to deficit spend on behalf of people who have lost their jobs and their health insurance? (Not to mention the money we are deficit spending fighting two wars that appear to be unwinnable and unending).
If you haven't called your members of Congress yet to vent about this, shame on you. If you need contact information for members of the House, go here. If you need contact information for the Senate, go here.
This is not about politics, folks. This is about life and death. Jennifer
Thursday, June 10, 2010
PA Regulators Say Insurers are Padding Revenue in Anticipation of Reform
The Associated Press reports that regulators in Pennsylvania are seeing a pattern of insurers raising rates in anticipation of health reform taking effect. No surprise. Jennifer
Wednesday, June 9, 2010
Irrationality Abounds
It's been a tough time here at Advocacy for Patients. We took on a handful of really difficult insurance appeals, and we've been beaten up pretty badly. The thread that runs through it all? Irrationality. It's not really about money. It's certainly not about what's best for patients. It's about a system that has run amok.
And so the fact that 33 states are suing to stop the health reform bill from taking effect is just plain nuts.
We had a patient with a small tumor in her inner, inner ear, close enough to the brain so you'd want to be really careful about treating it. The doctors recommended proton beam radiation therapy -- something they've been using and studying for over 20 years to treat just this type of tumor. The insurance company said it's experimental. Now, if she doesn't have proton beam radiotherapy, she's going to have some other very expensive treatment, so this isn't just about money. And we took it to external appeal and the external reviewer said we were RIGHT that this wasn't experimental. But, the reviewer said, because he was not convinced that proton beam therapy was really safer than photon beam therapy, proton beam therapy wasn't medically necessary!!!! HUH?! We win on the argument that it's not experimental and lose because it's not medically necessary simply because you don't think the proton beam therapy is likely to harm surrounding tissue, even though it's clearly better calculated to avoid causing damage? Are you kidding? I've never won the argument that something is not experimental but still lost the appeal. It's totally irrational.
Then there's the patient with occipital neuralgia who needs an occipital nerve stimulator. This one is really something. She's tried everything -- the list of medications she's tried is as long as my arm. She's in agony. She appealed a year ago (without me) and the insurer told her to go get an opinion at a teaching hospital. So she did, and they said she needs the stimulator. So we went back to the insurance company. First, they tried to refuse to hear our appeal entirely because they already heard it a year ago. Forget the fact that they told her to get another opinion and then come back -- they didn't want to hear it again. They actually were stupid enough to put in writing that they had only denied the claim again, triggering appeal rights, by "mistake." They should have just rejected the claim because it was the same as a year ago. Never mind the HUNDREDS of pages of additional medical records and journal articles we submitted. So they held our appeal hearing WITHOUT A MEDICAL DIRECTOR. That's right -- they went through the motions without even having a doctor review the file. All the work we did to gather 10 years worth of medical records and research the heck out of it, and we didn't even get a fair hearing. So now we have a final appeal to the employer.
Why isn't this about money? It's a self-funded plan. If the patient goes out on disability insurance or disability retirement, it's going to cost the employer at least as much as it would for them to pay for this surgery so she could continue to be a productive employee. DUH! Not to mention the cost of her prescription drugs, which are through the roof. Based on the way the insurance company spoke to us, and the emails from the medical director that were nothing short of spiteful, I think this is just mean. And again, irrational.
Then there is the young man with Tourette's Syndrome. His case was so bad that the drugs he was on to keep him from hurting himself had him pretty well sedated full-time. Four years ago, he got a device that provides deep brain stimulation that has been a miracle to him. The device is FDA approved for several uses -- dystonia, obsessive-compulsive disorder, Parkinson's disease -- but not Tourette's because there are so few people with Tourette's that they can't put together large studies. Before his father's employer switched insurance, the insurer paid to have the devices implanted. Now, he needed a new battery. The insurer refuses. The symptoms come back with the dead battery. His family went ahead and got the battery replaced, but we're still fighting with the insurance company. Our second level appeal hearing is scheduled for tomorrow. Wish me luck. But I'm already confused -- they sent me a copy of their entire file and there's no medical review. Another denial without a review by a medical director? Huh?
Why isn't this about money? At the very least, they'd have to pay to have the devices removed, and then the patient would be back on so many meds that he'd be totally sedated again. Meds are expensive and they never end. Compared to the cost of a battery replacement every few years, I bet the battery is cheaper.
These are hard cases. I knew when I took them that they would be hard. What I didn't know is that the occipital nerve stimulator would be denied because the studies are so small -- while in the same sentence, the insurer's consultant says of course, you can't have larger studies because the illness is so rare. What I didn't know is that they would not even have the appeal reviewed by a physician. What I didn't know was that I could win the argument that proton beam radiotherapy is not experimental and still lose the appeal. None of this makes any sense.
Thank goodness we win once in awhile. In what could have been the most irrational case of all, I have a client with Parkinson's disease who has been on long-term disability for almost 10 years. All of a sudden, they decided he's no longer disabled. Huh? Parkinson's is degenerative. It only gets worse. There is no cure. You can't have been disabled for 10 years and all of a sudden not be disabled any more. It's medically impossible. And yet I lost the first level appeal!!! My second level appeal letter was 13 pages long. I went through all of the patient's medical records from 2001 to today in pain-staking detail, documenting the decline of his condition over time. I mentioned a few times how irrational their reasoning was going to look to a court. Indeed, although we typically don't litigate, I was really inclined to go to court on this one myself because of how clearly right we were, and how clearly irrational the insurer was. Thankfully, finally, we won.
We may still win the occipital nerve stimulator and the Tourette's case. But the work involved -- there is no chance that any of these people has even a remote chance without my help. I can't help but think about the people who don't know I'm here and have nowhere to go. If they all came to me, I couldn't take all the cases. The insurance companies know most people can't mount this type of appeal. Just learning the medical jargon well enough to do the research to prove that something isn't experimental is a huge obstacle and a good reason why this isn't done more routinely.
But beyond that -- beyond these individual cases -- it is so clear from where I sit that the system is so horribly broken, than irrationality abounds. I'd almost feel better if it were all about money because then I could at least understand and predict outcomes. But as things are, it's impossible to understand or predict anything.
Stupid things happen -- you send an Anthem BCBS appeal to the wrong address, and a month later, you get a letter saying "we haven't done predeterminations since March 2003 so we can't process your correspondence." What? We already got a denial of a predetermination, so yeah, you do still do them. And you told us the wrong address, so now we will re-send the whole appeal yet again (at the cost of about $10 postage) to a different address and maybe they'll at least understand that we're submitting an appeal.
Every day, stuff like this happens. It's maddening, especially when we're really busy and things are piling up. All the administrative errors cost the insurance companies money, so it's clearly irrational that if you mail something to BCBS Appeals in Lexington, KY, they can't figure out that it should go to BCBS Appeals in MD instead and just send it there. Or rather than sitting on it for a month and then sending me a nonsensical letter, how about calling me and asking me what it's about? It would be much easier, no?
When you live in insurance-land, as I do, you almost become immune to the irrationality of it all. You expect the irrational. You stop getting upset about it. That's not a good thing. When we're talking about life and death, irrationality should be totally unacceptable. We all should be outraged.
And so I cannot help but conclude that the states who oppose health reform either don't spend enough time dealing with insurance companies to know how irrational they are, or they don't care. I prefer to think they're ignorant than to think that they're evil. Indeed, most governments don't operate a whole lot more rationally than insurance companies do. Perhaps "too big to fail" should really be "too big to exist in the first place," so nothing -- no company, no government agency -- should be allowed to get so large that irrationality becomes the accepted norm.
What I do know, though, is that patients -- the ones being dealt the irrational decisions without explanation or resources to combat them -- are the ones who suffer. And that's unacceptable. Indeed, I think every one of you who lives in a state that is suing to overturn the health reform law should be screaming about it. How dare politicians spend taxpayer dollars to bring totally frivolous lawsuits instead of spending that money trying to force insurance companies to act rationally in the first place, so reform isn't so badly needed? And the lawsuits are frivolous -- I haven't read or heard a single explanation of the legal basis for these suits. Indeed, I participated in a panel discussion about this at a law school and I challenged anybody in the room to explain to me what the basis for the lawsuits is. Not one answer.
[And just fyi, as best I can gather, the states that are suing to stop reform are: Florida, Georgia, Oklahoma, South Carolina, Nebraska, Texas, Utah, Louisiana, Alabama, Michigan, Colorado, Pennsylvania, Washington, Idaho, South Dakota, Indiana, North Dakota, Mississippi, Arizona, Nevada, Virginia, Mississippi, and Alaska. An overview of the litigation can be found here. Note that several self-described Christian organizations also have filed suit to stop the law from taking effect. Don't ask me why.]
So we have insurance companies spending a bunch of money to fight people like me who are trying to get people the treatment that allows them to function and, in some cases, to live, even when the treatment would not cost more than the treatment they are willing to cover. We have insurance companies making costly errors, and crazy decisions like suggesting that a Parkinson's patient can become less disabled and trying to defend those crazy decisions even after appeals are filed. And we have people spending a TON of money trying to stop a law that would exert some control over the situation, at least making it easier for consumers to appeal adverse decisions, fund consumer assistance programs at the state level so that states would help consumers appeal adverse decisions, and allow people to change insurance if their insurer's lack of rationality is so extreme that they choose to abandon them entirely.
Is there one thing in all of this that makes any sense whatsoever? Jennifer
And so the fact that 33 states are suing to stop the health reform bill from taking effect is just plain nuts.
We had a patient with a small tumor in her inner, inner ear, close enough to the brain so you'd want to be really careful about treating it. The doctors recommended proton beam radiation therapy -- something they've been using and studying for over 20 years to treat just this type of tumor. The insurance company said it's experimental. Now, if she doesn't have proton beam radiotherapy, she's going to have some other very expensive treatment, so this isn't just about money. And we took it to external appeal and the external reviewer said we were RIGHT that this wasn't experimental. But, the reviewer said, because he was not convinced that proton beam therapy was really safer than photon beam therapy, proton beam therapy wasn't medically necessary!!!! HUH?! We win on the argument that it's not experimental and lose because it's not medically necessary simply because you don't think the proton beam therapy is likely to harm surrounding tissue, even though it's clearly better calculated to avoid causing damage? Are you kidding? I've never won the argument that something is not experimental but still lost the appeal. It's totally irrational.
Then there's the patient with occipital neuralgia who needs an occipital nerve stimulator. This one is really something. She's tried everything -- the list of medications she's tried is as long as my arm. She's in agony. She appealed a year ago (without me) and the insurer told her to go get an opinion at a teaching hospital. So she did, and they said she needs the stimulator. So we went back to the insurance company. First, they tried to refuse to hear our appeal entirely because they already heard it a year ago. Forget the fact that they told her to get another opinion and then come back -- they didn't want to hear it again. They actually were stupid enough to put in writing that they had only denied the claim again, triggering appeal rights, by "mistake." They should have just rejected the claim because it was the same as a year ago. Never mind the HUNDREDS of pages of additional medical records and journal articles we submitted. So they held our appeal hearing WITHOUT A MEDICAL DIRECTOR. That's right -- they went through the motions without even having a doctor review the file. All the work we did to gather 10 years worth of medical records and research the heck out of it, and we didn't even get a fair hearing. So now we have a final appeal to the employer.
Why isn't this about money? It's a self-funded plan. If the patient goes out on disability insurance or disability retirement, it's going to cost the employer at least as much as it would for them to pay for this surgery so she could continue to be a productive employee. DUH! Not to mention the cost of her prescription drugs, which are through the roof. Based on the way the insurance company spoke to us, and the emails from the medical director that were nothing short of spiteful, I think this is just mean. And again, irrational.
Then there is the young man with Tourette's Syndrome. His case was so bad that the drugs he was on to keep him from hurting himself had him pretty well sedated full-time. Four years ago, he got a device that provides deep brain stimulation that has been a miracle to him. The device is FDA approved for several uses -- dystonia, obsessive-compulsive disorder, Parkinson's disease -- but not Tourette's because there are so few people with Tourette's that they can't put together large studies. Before his father's employer switched insurance, the insurer paid to have the devices implanted. Now, he needed a new battery. The insurer refuses. The symptoms come back with the dead battery. His family went ahead and got the battery replaced, but we're still fighting with the insurance company. Our second level appeal hearing is scheduled for tomorrow. Wish me luck. But I'm already confused -- they sent me a copy of their entire file and there's no medical review. Another denial without a review by a medical director? Huh?
Why isn't this about money? At the very least, they'd have to pay to have the devices removed, and then the patient would be back on so many meds that he'd be totally sedated again. Meds are expensive and they never end. Compared to the cost of a battery replacement every few years, I bet the battery is cheaper.
These are hard cases. I knew when I took them that they would be hard. What I didn't know is that the occipital nerve stimulator would be denied because the studies are so small -- while in the same sentence, the insurer's consultant says of course, you can't have larger studies because the illness is so rare. What I didn't know is that they would not even have the appeal reviewed by a physician. What I didn't know was that I could win the argument that proton beam radiotherapy is not experimental and still lose the appeal. None of this makes any sense.
Thank goodness we win once in awhile. In what could have been the most irrational case of all, I have a client with Parkinson's disease who has been on long-term disability for almost 10 years. All of a sudden, they decided he's no longer disabled. Huh? Parkinson's is degenerative. It only gets worse. There is no cure. You can't have been disabled for 10 years and all of a sudden not be disabled any more. It's medically impossible. And yet I lost the first level appeal!!! My second level appeal letter was 13 pages long. I went through all of the patient's medical records from 2001 to today in pain-staking detail, documenting the decline of his condition over time. I mentioned a few times how irrational their reasoning was going to look to a court. Indeed, although we typically don't litigate, I was really inclined to go to court on this one myself because of how clearly right we were, and how clearly irrational the insurer was. Thankfully, finally, we won.
We may still win the occipital nerve stimulator and the Tourette's case. But the work involved -- there is no chance that any of these people has even a remote chance without my help. I can't help but think about the people who don't know I'm here and have nowhere to go. If they all came to me, I couldn't take all the cases. The insurance companies know most people can't mount this type of appeal. Just learning the medical jargon well enough to do the research to prove that something isn't experimental is a huge obstacle and a good reason why this isn't done more routinely.
But beyond that -- beyond these individual cases -- it is so clear from where I sit that the system is so horribly broken, than irrationality abounds. I'd almost feel better if it were all about money because then I could at least understand and predict outcomes. But as things are, it's impossible to understand or predict anything.
Stupid things happen -- you send an Anthem BCBS appeal to the wrong address, and a month later, you get a letter saying "we haven't done predeterminations since March 2003 so we can't process your correspondence." What? We already got a denial of a predetermination, so yeah, you do still do them. And you told us the wrong address, so now we will re-send the whole appeal yet again (at the cost of about $10 postage) to a different address and maybe they'll at least understand that we're submitting an appeal.
Every day, stuff like this happens. It's maddening, especially when we're really busy and things are piling up. All the administrative errors cost the insurance companies money, so it's clearly irrational that if you mail something to BCBS Appeals in Lexington, KY, they can't figure out that it should go to BCBS Appeals in MD instead and just send it there. Or rather than sitting on it for a month and then sending me a nonsensical letter, how about calling me and asking me what it's about? It would be much easier, no?
When you live in insurance-land, as I do, you almost become immune to the irrationality of it all. You expect the irrational. You stop getting upset about it. That's not a good thing. When we're talking about life and death, irrationality should be totally unacceptable. We all should be outraged.
And so I cannot help but conclude that the states who oppose health reform either don't spend enough time dealing with insurance companies to know how irrational they are, or they don't care. I prefer to think they're ignorant than to think that they're evil. Indeed, most governments don't operate a whole lot more rationally than insurance companies do. Perhaps "too big to fail" should really be "too big to exist in the first place," so nothing -- no company, no government agency -- should be allowed to get so large that irrationality becomes the accepted norm.
What I do know, though, is that patients -- the ones being dealt the irrational decisions without explanation or resources to combat them -- are the ones who suffer. And that's unacceptable. Indeed, I think every one of you who lives in a state that is suing to overturn the health reform law should be screaming about it. How dare politicians spend taxpayer dollars to bring totally frivolous lawsuits instead of spending that money trying to force insurance companies to act rationally in the first place, so reform isn't so badly needed? And the lawsuits are frivolous -- I haven't read or heard a single explanation of the legal basis for these suits. Indeed, I participated in a panel discussion about this at a law school and I challenged anybody in the room to explain to me what the basis for the lawsuits is. Not one answer.
[And just fyi, as best I can gather, the states that are suing to stop reform are: Florida, Georgia, Oklahoma, South Carolina, Nebraska, Texas, Utah, Louisiana, Alabama, Michigan, Colorado, Pennsylvania, Washington, Idaho, South Dakota, Indiana, North Dakota, Mississippi, Arizona, Nevada, Virginia, Mississippi, and Alaska. An overview of the litigation can be found here. Note that several self-described Christian organizations also have filed suit to stop the law from taking effect. Don't ask me why.]
So we have insurance companies spending a bunch of money to fight people like me who are trying to get people the treatment that allows them to function and, in some cases, to live, even when the treatment would not cost more than the treatment they are willing to cover. We have insurance companies making costly errors, and crazy decisions like suggesting that a Parkinson's patient can become less disabled and trying to defend those crazy decisions even after appeals are filed. And we have people spending a TON of money trying to stop a law that would exert some control over the situation, at least making it easier for consumers to appeal adverse decisions, fund consumer assistance programs at the state level so that states would help consumers appeal adverse decisions, and allow people to change insurance if their insurer's lack of rationality is so extreme that they choose to abandon them entirely.
Is there one thing in all of this that makes any sense whatsoever? Jennifer
Tuesday, June 8, 2010
Easy to Be Hard
While most of the time, what I write here is about health care and health reform and health insurance and all that stuff, I do also post personal entries to this blog, and so today, I want to talk about something that happened yesterday on Facebook.
A wonderful woman died, too young. I thought -- as I have several times when someone young and really special dies -- why them and not me? It's not that I want to die; it's that I don't feel it would be the same kind of loss. I don't have kids. I am not a hero. And so I wonder at the logic of it all -- why them and not me?
It started an interesting discussion on Facebook. After the first couple of responses -- people telling me I am special and all that -- I said I thought about taking the post down because that really wasn't the point. I really was wondering about the why of it all. And then I started a whole new discussion thread about more positive things. Still, people kept posting on that first thread all day. Some of it was interesting. Some of it was flattering. It just kept going until well into the evening.
And then a guy who's been an Advocacy for Patients client, who is VERY depressed and down, and who I've spent a lot of time trying to encourage and help, said he thought I posted the original post just to get people to tell me how wonderful I am. He said I have borderline personality disorder.
He could not possibly know how incredibly hurtful those particular words would be. He could not have known that borderline personality disorder has been in my immediate family, so that of all the psychiatric things he could have accused me of, this would be the one thing that would really upset me. But without knowing it, he upset me terribly. I blocked him. I will have nothing more to do with him. There is no question that the loss is his. He just lost one of the pillars of his support system. But I feel really rotten.
I don't wonder for a minute whether I posted what I did to manipulate people to say good things about me. I've been posting what I've hoped were provocative things for the past couple of weeks. And I remember when my friend Ruth died, I honestly felt "why not me?" It would have been so much less of a loss. She was a hero. She had two young children. My overriding emotion was "why her and not me?" It was a question to god or fate or whatever. So when I read Nancy's obituary yesterday morning, I had that same feeling, and I posted it on Facebook NOT to get attention, but as an honest expression of confusion of how the universe works in such screwed up illogical ways. I know what was in my heart. It was not about trying to manipulate people into saying I'm wonderful. I actually already get more of that than I'm comfortable with -- people think I'm this really special person when I feel so very normal, flawed. I don't really like it when people say I'm out of the norm. Maybe it's that I want to be normal. But I sure do have flaws, and the fact that people I try to help through my work don't see them doesn't mean they aren't there -- it just means I'm being professional.
So I don't wonder for even a minute if he was right. He could have been right about something at some point, but not about that, not yesterday.
What I don't understand is why -- why would he take aim at me? I have done all I could do to help him. He's very sad, very angry, very bitter. As best I could tell, he didn't have a whole lot of people on his side helping him out. So why come after one of the people who was trying to help? I don't get it?
And I am hurt. I offer myself to people with an open heart. I hold nothing back. So when a patient like him has a tough time emotionally, I share my emotional experience of being a patient with them. I open up and make myself vulnerable. I wouldn't have it any other way. But when one of those people takes aim at me -- especially in a totally unexpected way -- I am hurt and confused and I don't understand -- why would he bite the hand that feeds him?
It made me think of this song:
How can people be so heartless
How can people be so cruel
Easy to be hard, easy to be cold
How can people have no feelings
How can they ignore their friends
Easy to be proud, easy to say no
Especially people who care about strangers
Who care about evil and social injustice
Do you only care about bleeding crowd
How about a needing friend, I need a friend
How can people be so heartless
You know I'm hung up on you
Easy to be proud, easy to say no
Especially people who care about strangers
Who care about evil and social injustice
Do you only care about bleeding crowd
How about a needing friend, we all need a friend
How can people be so heartless
How can people be so cruel
Easy to be proud, easy to say no
Easy to be cold, easy to say no
Come, on, easy to give in, easy to say no
Easy to be cold, easy to say no
Much too easy to say no
I get it, but I don't really get where it comes from. I mean, I get that there are just mean people. I just don't get why. Jennifer
A wonderful woman died, too young. I thought -- as I have several times when someone young and really special dies -- why them and not me? It's not that I want to die; it's that I don't feel it would be the same kind of loss. I don't have kids. I am not a hero. And so I wonder at the logic of it all -- why them and not me?
It started an interesting discussion on Facebook. After the first couple of responses -- people telling me I am special and all that -- I said I thought about taking the post down because that really wasn't the point. I really was wondering about the why of it all. And then I started a whole new discussion thread about more positive things. Still, people kept posting on that first thread all day. Some of it was interesting. Some of it was flattering. It just kept going until well into the evening.
And then a guy who's been an Advocacy for Patients client, who is VERY depressed and down, and who I've spent a lot of time trying to encourage and help, said he thought I posted the original post just to get people to tell me how wonderful I am. He said I have borderline personality disorder.
He could not possibly know how incredibly hurtful those particular words would be. He could not have known that borderline personality disorder has been in my immediate family, so that of all the psychiatric things he could have accused me of, this would be the one thing that would really upset me. But without knowing it, he upset me terribly. I blocked him. I will have nothing more to do with him. There is no question that the loss is his. He just lost one of the pillars of his support system. But I feel really rotten.
I don't wonder for a minute whether I posted what I did to manipulate people to say good things about me. I've been posting what I've hoped were provocative things for the past couple of weeks. And I remember when my friend Ruth died, I honestly felt "why not me?" It would have been so much less of a loss. She was a hero. She had two young children. My overriding emotion was "why her and not me?" It was a question to god or fate or whatever. So when I read Nancy's obituary yesterday morning, I had that same feeling, and I posted it on Facebook NOT to get attention, but as an honest expression of confusion of how the universe works in such screwed up illogical ways. I know what was in my heart. It was not about trying to manipulate people into saying I'm wonderful. I actually already get more of that than I'm comfortable with -- people think I'm this really special person when I feel so very normal, flawed. I don't really like it when people say I'm out of the norm. Maybe it's that I want to be normal. But I sure do have flaws, and the fact that people I try to help through my work don't see them doesn't mean they aren't there -- it just means I'm being professional.
So I don't wonder for even a minute if he was right. He could have been right about something at some point, but not about that, not yesterday.
What I don't understand is why -- why would he take aim at me? I have done all I could do to help him. He's very sad, very angry, very bitter. As best I could tell, he didn't have a whole lot of people on his side helping him out. So why come after one of the people who was trying to help? I don't get it?
And I am hurt. I offer myself to people with an open heart. I hold nothing back. So when a patient like him has a tough time emotionally, I share my emotional experience of being a patient with them. I open up and make myself vulnerable. I wouldn't have it any other way. But when one of those people takes aim at me -- especially in a totally unexpected way -- I am hurt and confused and I don't understand -- why would he bite the hand that feeds him?
It made me think of this song:
How can people be so heartless
How can people be so cruel
Easy to be hard, easy to be cold
How can people have no feelings
How can they ignore their friends
Easy to be proud, easy to say no
Especially people who care about strangers
Who care about evil and social injustice
Do you only care about bleeding crowd
How about a needing friend, I need a friend
How can people be so heartless
You know I'm hung up on you
Easy to be proud, easy to say no
Especially people who care about strangers
Who care about evil and social injustice
Do you only care about bleeding crowd
How about a needing friend, we all need a friend
How can people be so heartless
How can people be so cruel
Easy to be proud, easy to say no
Easy to be cold, easy to say no
Come, on, easy to give in, easy to say no
Easy to be cold, easy to say no
Much too easy to say no
I get it, but I don't really get where it comes from. I mean, I get that there are just mean people. I just don't get why. Jennifer
Caring for Multiple Chronic Illnesses
The US Department of Health and Human Services has issued a draft strategy for controlling multiple chronic conditions, seeking comments from the public. We filed the following comments in partnership with Lybba yesterday:
June 11, 2010
VIA ELECTONIC MAIL
MCC@hhs.gov
U.S. Department of Health and Human Services
200 Independence Avenue, S.W.
Room 736-E
Washington D.C. 20201
Attention: MCC Strategic Framework
Dear Sir/Madam:
Thank you for this opportunity to comment on the Department’s Draft Strategic Framework addressing approaches to patients with multiple chronic illnesses.
Advocacy for Patients with Chronic Illness, Inc. is a 501(c)(3) tax exempt organization that provides free information, advice and advocacy services to patients with chronic illnesses nationwide in areas including health and disability insurance, Social Security disability, employment discrimination, family and medical leave, educational equity, and resource location. We strive to meet the needs of the chronically ill. In our five years, we have worked on over 5,000 matters for a total of more than 3,500 individuals, the vast majority of whom have more than one chronic illness. In addition, we recently completed a survey conducted in partnership with the University of Michigan Center for Managing Chronic Disease which further substantiated the fact that many, if not most, patients with chronic illnesses have more than one chronic illness. Thus, we are pleased to have an opportunity to share our experience with you in the formulation of this strategic framework.
Lybba is a 501(c)(3) nonprofit research, design, and media organization dedicated to innovation through collaboration in the medical sciences. We create compelling interaction environments, films, and social media campaigns that build interest, enrich understanding, and provide compelling ways for people to engage constructively with chronic health issues. Through the power of design, computational power, data visualization, and the network effect, Lybba amplifies everyone’s efforts by orders of magnitude. Our online community, conceived by film‐maker Jesse Dylan, is one of the web’s first personal health platforms to integrate social networking and reliable medical knowledge into treatment histories and care plans that provide patients with what they need to make their own path toward wellness.
It is our joint experience that patients with digestive, neurological and rheumatologic diseases tend to be presented with a cluster of challenges – Crohn’s disease and multiple sclerosis, lupus and rheumatoid arthritis, chronic fatigue syndrome and fibromyalgia – most in the autoimmune category. In our experience, it is more common for patients to have more than one chronic illness (i.e, comorbidities) than it is for them to have only one. This requires a high degree of care coordination, and presents challenges with medication management, duplication of tests, and conflicting advice. As you state, “[t]his picture is even more complex as some combinations of conditions, or clusters, have synergistic interactions, but not others.”
The complexity of living with multiple chronic conditions (MCC) carries with it significant costs. With two-thirds of every health care dollar spent in the United States going to the cost of chronic care, it is imperative that we all – patients included – work together to find ways to provide quality care for lower cost.
While it may well be true, as you suggest, that most old and frail people have MCCs, we question whether it is equally true, as you also suggest, that most people with MCCs are old and frail. Indeed, we work with patients every single day who, with tools and guidance, are learning to play a more active role in managing their own care. Studies have established the value of actively involving a patient in his or her own care. “Knowledge and experience held by the patient has for too long been an untapped resource. It is something that could greatly benefit the quality of
patients’ care and ultimately their quality of life, but which has been largely ignored in the past. . . .”1 “Collaborative [c]are acknowledges the centrality of patients as primary caregivers by integrating them as key actors in the care process.”2
As many of us recognize, patients who learn to navigate the system, practice shared decision-making with their doctors, and evaluate their care do obtain improved outcomes, and improved outcomes reduce cost.3 “[P]atients with an array of chronic conditions who were enrolled in a comprehensive self-care management program experienced significant improvements in adherence to medical regimens . . . , health behavior change recommendations . . ., psychosocial and emotional distress caused by illness, self-reported health status, reduced occurrence of hospitalizations, and reduced costs of care.”4 Indeed, one study found that patient centered practice improved health status and increased the efficiency of care by reducing diagnostic tests and referrals – again, resulting in lower costs.5
It is our belief, based on our extensive experience working with people with MCCs, that investing in teaching them self-management tools will be paid back many times over in the form of improved health outcomes. There are a sufficient number of experiments from North Carolina7, Vermont8, Massachusetts9, Minnesota10, Pennsylvania11, New York12, and elsewhere that have proven that patient-centered medical homes save money. However, improved health and decreased cost outcomes were only accomplished with up-front investments. in no instance was this accomplished without an up-front investment.
For example, Advocacy for Patients can and does give seminars, webinars, weblogs, and other tutorials on how to find insurance if you have a pre-existing condition; how to prepare a health or disability insurance appeal; how to seek reasonable accommodations at work or school; how to use the internet to find available resources; and on other areas important to people living with MCCs. Since Advocacy for Patients is a small organization that cannot represent every patient with a chronic illness who needs help, so we spend a fair amount of time teaching and coaching those patients whom we cannot represent directly. We take care of those who are too frail or infirmed to represent themselves; but those who are not cognitively impaired, who can – and indeed, who want to – represent themselves, we teach. Advocacy for Patients’ cornerstone publication, Know Your Rights: A Handbook for Patients with Chronic Illness, reaches at least 1,000 patients a year, and increasingly is sought after by medical offices, hospitals, and libraries. Advocacy for Patients does all of this on a budget of under $200,000. We are certain that we are saving society more than that in health care expenses by keeping people insured, in their jobs, in school, and with their needs met.
Lybba also offers patients communication and self-management services. We take a novel and organic approach which yields self‐organizing and informed communities where compassion is the currency and discovery is the purpose. For example, a person with MCCs, (neuromyelitis optica and lupus, both of which are chronic, incurable autoimmune conditions) can use Lybba’s web portal to connect with other NMO and lupus patients, but also with the larger community of individuals with rare and chronic conditions. Connections made between users leads to new
knowledge about shared co-morbidities, effective and ineffective treatment options, treatment side-effects and pain management, all of which leads to empowered patients, new break-throughs in disease treatment and management and improved and more comprehensive care. Lybba’s unique design features and capabilities will help to speed new discoveries from the “bench” to the “bed,” getting patients the information they need to take charge of and improve their quality of life.
HHS’s second goal of maximizing the use of proven self-care management and other services by patients with MCCs can be enriched by this sort of outside-the-box thinking. HHS should harness the information and experience of the chronic illness community/organizations that work directly with people living with MCCs, as well as the agencies and other stakeholders described in the report. The answers to self-management issues will come in large part from the community of patients with MCCs through nonprofits like Advocacy for Patients and Lybba. We know how to teach patients to manage their own diseases because we are patients ourselves, and we have learned, through hard experience, that self-management pays off for everyone in the system. Even something as simple, but critically important, as medication self-management needs to be taught. We who manage our own medication regimen on a daily basis have developed tools for doing so successfully. We can teach other patients to do the same, and allowing us to share our experience is far less costly than having health care professionals do it for us.
Similarly, patients play a critical role in care coordination. For example, Advocacy for Patients’ Executive Director, Jennifer Jaff, has Crohn’s disease, gastroparesis, high blood pressure, arthritis, and asthma. Every time a doctor writes an order for blood work, she ensures that the doctor instruct the lab to send her a copy. She then sends a copy to every one of her physicians. In the absence of multi-state, multi-pracrtice electronic medical records, this is a system that works, that costs the system nothing, and that most patients would be pleased to do if only given the tools and the opportunity.
Also of primary importance to Lybba is the appreciation of the underlying connections that exist between chronic conditions that lead to better care coordination and management. Included in Lybba’s online platform is the ability to connect across diseases with patients, researchers and physicians. The social networking and patient participation aspects of Lybba allow for those underlying connections and similarities to naturally surface within the community.
In conclusion, involving patients in HHS’s strategy for addressing the needs of patients with MCCs is inexpensive, intelligent, and, indeed, necessary for the success of disease management programs. If patients do not buy into the programs you put in place – if they are not given the respect and dignity that come with a clearly defined role and responsibilities – attempts at managing MCC will fail. Thus, we strongly urge you to consider involving patient-based organizations like ours in developing a strategy for controlling both the cost and the ill effects of MCCs.
Sincerely,
Jesse Dylan
Founder
Lybba
8330 West 3rd Street
Los Angeles, CA 90048
(323) 653-2300
http://www.lybba.org
Jennifer C. Jaff, Esq.
Executive Director
Advocacy for Patients with Chronic Illness
18 Timberline Drive
Farmington, CT 06032
(860) 674-1370
http://www.advocacyforpatients.org
1 R. Tattersall, “The expert patient: a new approach to chronic disease management for the
twenty-first century,” Clinical Medicine Vol. 2 No. 3, 227-229 (May/June 2002) (citation
omitted).
2 J.H. Hibbard, “Engaging Health Care Consumers to Improve the Quality of Care,” Medical
Care, 41 (1), I-61-70, at I-64 (citation omitted).
3 Ibid. at I-63.
4 Ibid. at I-65 (citations omitted).
5 Stewart, Moira PhD; Judith Belle Brown, PhD; Allan Donner, PhD; Ian R. McWhinney, OC,
MD; Julian Oates, MD; W. Wayne Weston, MD; John Jordan, MD. The Impact of Patient-
Centered Care on Outcomes, The Journal of Family Practice (J Fam Pract) 2000; 49: 796-
804.
6 California HealthCare Foundation,.
7 B.D. Steiner et al. (2008.) Community Care of North Carolina; Improving care through
community health networks. Annals Family Medicine, 6:361-367.
8 Department of Health, (2009). Blueprint for health annual report Burlington, VT: Retrieved
from Vermont department of Health. 2008 Annual Report January 2009 Blueprint for
Health. Burlington, VT Dept. of Health 2009.
9 Beal, A.C., M.M. Doty, S.E. Hernandez, K.K. Shea, K. Davis. Closing the Divide: How Medical
Homes Promote Equity in Health Care: Results from The Commonwealth Fund 2006 Health
Care Quality Survey, The Commonwealth Fund, June 2007.
10 Isetts, et al. (2008.) Journal American Pharm Assoc. 48(2):203-211.
11 Leff B, Reider L, Frick K et al. (2009.) Guided care and the cost of complex health care: a
preliminary report. American Journal Managed Care, 15(8):555-559.
12 Rosenthal, T. C., M. E. Horwitz, et al. (1996.) Medicaid Primary Care Services in New York
State: Partial Capitation vs Full Capitation." Journal of Family Practice, 42(4):362-368.
June 11, 2010
VIA ELECTONIC MAIL
MCC@hhs.gov
U.S. Department of Health and Human Services
200 Independence Avenue, S.W.
Room 736-E
Washington D.C. 20201
Attention: MCC Strategic Framework
Dear Sir/Madam:
Thank you for this opportunity to comment on the Department’s Draft Strategic Framework addressing approaches to patients with multiple chronic illnesses.
Advocacy for Patients with Chronic Illness, Inc. is a 501(c)(3) tax exempt organization that provides free information, advice and advocacy services to patients with chronic illnesses nationwide in areas including health and disability insurance, Social Security disability, employment discrimination, family and medical leave, educational equity, and resource location. We strive to meet the needs of the chronically ill. In our five years, we have worked on over 5,000 matters for a total of more than 3,500 individuals, the vast majority of whom have more than one chronic illness. In addition, we recently completed a survey conducted in partnership with the University of Michigan Center for Managing Chronic Disease which further substantiated the fact that many, if not most, patients with chronic illnesses have more than one chronic illness. Thus, we are pleased to have an opportunity to share our experience with you in the formulation of this strategic framework.
Lybba is a 501(c)(3) nonprofit research, design, and media organization dedicated to innovation through collaboration in the medical sciences. We create compelling interaction environments, films, and social media campaigns that build interest, enrich understanding, and provide compelling ways for people to engage constructively with chronic health issues. Through the power of design, computational power, data visualization, and the network effect, Lybba amplifies everyone’s efforts by orders of magnitude. Our online community, conceived by film‐maker Jesse Dylan, is one of the web’s first personal health platforms to integrate social networking and reliable medical knowledge into treatment histories and care plans that provide patients with what they need to make their own path toward wellness.
It is our joint experience that patients with digestive, neurological and rheumatologic diseases tend to be presented with a cluster of challenges – Crohn’s disease and multiple sclerosis, lupus and rheumatoid arthritis, chronic fatigue syndrome and fibromyalgia – most in the autoimmune category. In our experience, it is more common for patients to have more than one chronic illness (i.e, comorbidities) than it is for them to have only one. This requires a high degree of care coordination, and presents challenges with medication management, duplication of tests, and conflicting advice. As you state, “[t]his picture is even more complex as some combinations of conditions, or clusters, have synergistic interactions, but not others.”
The complexity of living with multiple chronic conditions (MCC) carries with it significant costs. With two-thirds of every health care dollar spent in the United States going to the cost of chronic care, it is imperative that we all – patients included – work together to find ways to provide quality care for lower cost.
While it may well be true, as you suggest, that most old and frail people have MCCs, we question whether it is equally true, as you also suggest, that most people with MCCs are old and frail. Indeed, we work with patients every single day who, with tools and guidance, are learning to play a more active role in managing their own care. Studies have established the value of actively involving a patient in his or her own care. “Knowledge and experience held by the patient has for too long been an untapped resource. It is something that could greatly benefit the quality of
patients’ care and ultimately their quality of life, but which has been largely ignored in the past. . . .”1 “Collaborative [c]are acknowledges the centrality of patients as primary caregivers by integrating them as key actors in the care process.”2
As many of us recognize, patients who learn to navigate the system, practice shared decision-making with their doctors, and evaluate their care do obtain improved outcomes, and improved outcomes reduce cost.3 “[P]atients with an array of chronic conditions who were enrolled in a comprehensive self-care management program experienced significant improvements in adherence to medical regimens . . . , health behavior change recommendations . . ., psychosocial and emotional distress caused by illness, self-reported health status, reduced occurrence of hospitalizations, and reduced costs of care.”4 Indeed, one study found that patient centered practice improved health status and increased the efficiency of care by reducing diagnostic tests and referrals – again, resulting in lower costs.5
Around 90 percent of the care a person needs to manage a chronic disease must come directly from the patient. Evidence is growing that self-management interventions, such as self-monitoring and decision making, lead not only to improvements in health outcomes and health status, but also to increased patient satisfaction and reductions in hospital and emergency room costs. 6Thus, although we do not intend to minimize the significant role caregivers play in the care of patients with MCCs, and the need to care for the caregivers through respite programs and other means, we also feel strongly that failing to fully appreciate and utilize the resources patients represent is a lost opportunity – and a costly one, at that.
It is our belief, based on our extensive experience working with people with MCCs, that investing in teaching them self-management tools will be paid back many times over in the form of improved health outcomes. There are a sufficient number of experiments from North Carolina7, Vermont8, Massachusetts9, Minnesota10, Pennsylvania11, New York12, and elsewhere that have proven that patient-centered medical homes save money. However, improved health and decreased cost outcomes were only accomplished with up-front investments. in no instance was this accomplished without an up-front investment.
For example, Advocacy for Patients can and does give seminars, webinars, weblogs, and other tutorials on how to find insurance if you have a pre-existing condition; how to prepare a health or disability insurance appeal; how to seek reasonable accommodations at work or school; how to use the internet to find available resources; and on other areas important to people living with MCCs. Since Advocacy for Patients is a small organization that cannot represent every patient with a chronic illness who needs help, so we spend a fair amount of time teaching and coaching those patients whom we cannot represent directly. We take care of those who are too frail or infirmed to represent themselves; but those who are not cognitively impaired, who can – and indeed, who want to – represent themselves, we teach. Advocacy for Patients’ cornerstone publication, Know Your Rights: A Handbook for Patients with Chronic Illness, reaches at least 1,000 patients a year, and increasingly is sought after by medical offices, hospitals, and libraries. Advocacy for Patients does all of this on a budget of under $200,000. We are certain that we are saving society more than that in health care expenses by keeping people insured, in their jobs, in school, and with their needs met.
Lybba also offers patients communication and self-management services. We take a novel and organic approach which yields self‐organizing and informed communities where compassion is the currency and discovery is the purpose. For example, a person with MCCs, (neuromyelitis optica and lupus, both of which are chronic, incurable autoimmune conditions) can use Lybba’s web portal to connect with other NMO and lupus patients, but also with the larger community of individuals with rare and chronic conditions. Connections made between users leads to new
knowledge about shared co-morbidities, effective and ineffective treatment options, treatment side-effects and pain management, all of which leads to empowered patients, new break-throughs in disease treatment and management and improved and more comprehensive care. Lybba’s unique design features and capabilities will help to speed new discoveries from the “bench” to the “bed,” getting patients the information they need to take charge of and improve their quality of life.
HHS’s second goal of maximizing the use of proven self-care management and other services by patients with MCCs can be enriched by this sort of outside-the-box thinking. HHS should harness the information and experience of the chronic illness community/organizations that work directly with people living with MCCs, as well as the agencies and other stakeholders described in the report. The answers to self-management issues will come in large part from the community of patients with MCCs through nonprofits like Advocacy for Patients and Lybba. We know how to teach patients to manage their own diseases because we are patients ourselves, and we have learned, through hard experience, that self-management pays off for everyone in the system. Even something as simple, but critically important, as medication self-management needs to be taught. We who manage our own medication regimen on a daily basis have developed tools for doing so successfully. We can teach other patients to do the same, and allowing us to share our experience is far less costly than having health care professionals do it for us.
Similarly, patients play a critical role in care coordination. For example, Advocacy for Patients’ Executive Director, Jennifer Jaff, has Crohn’s disease, gastroparesis, high blood pressure, arthritis, and asthma. Every time a doctor writes an order for blood work, she ensures that the doctor instruct the lab to send her a copy. She then sends a copy to every one of her physicians. In the absence of multi-state, multi-pracrtice electronic medical records, this is a system that works, that costs the system nothing, and that most patients would be pleased to do if only given the tools and the opportunity.
Also of primary importance to Lybba is the appreciation of the underlying connections that exist between chronic conditions that lead to better care coordination and management. Included in Lybba’s online platform is the ability to connect across diseases with patients, researchers and physicians. The social networking and patient participation aspects of Lybba allow for those underlying connections and similarities to naturally surface within the community.
In conclusion, involving patients in HHS’s strategy for addressing the needs of patients with MCCs is inexpensive, intelligent, and, indeed, necessary for the success of disease management programs. If patients do not buy into the programs you put in place – if they are not given the respect and dignity that come with a clearly defined role and responsibilities – attempts at managing MCC will fail. Thus, we strongly urge you to consider involving patient-based organizations like ours in developing a strategy for controlling both the cost and the ill effects of MCCs.
Sincerely,
Jesse Dylan
Founder
Lybba
8330 West 3rd Street
Los Angeles, CA 90048
(323) 653-2300
http://www.lybba.org
Jennifer C. Jaff, Esq.
Executive Director
Advocacy for Patients with Chronic Illness
18 Timberline Drive
Farmington, CT 06032
(860) 674-1370
http://www.advocacyforpatients.org
1 R. Tattersall, “The expert patient: a new approach to chronic disease management for the
twenty-first century,” Clinical Medicine Vol. 2 No. 3, 227-229 (May/June 2002) (citation
omitted).
2 J.H. Hibbard, “Engaging Health Care Consumers to Improve the Quality of Care,” Medical
Care, 41 (1), I-61-70, at I-64 (citation omitted).
3 Ibid. at I-63.
4 Ibid. at I-65 (citations omitted).
5 Stewart, Moira PhD; Judith Belle Brown, PhD; Allan Donner, PhD; Ian R. McWhinney, OC,
MD; Julian Oates, MD; W. Wayne Weston, MD; John Jordan, MD. The Impact of Patient-
Centered Care on Outcomes, The Journal of Family Practice (J Fam Pract) 2000; 49: 796-
804.
6 California HealthCare Foundation,
7 B.D. Steiner et al. (2008.) Community Care of North Carolina; Improving care through
community health networks. Annals Family Medicine, 6:361-367.
8 Department of Health, (2009). Blueprint for health annual report Burlington, VT: Retrieved
from Vermont department of Health. 2008 Annual Report January 2009 Blueprint for
Health. Burlington, VT Dept. of Health 2009.
9 Beal, A.C., M.M. Doty, S.E. Hernandez, K.K. Shea, K. Davis. Closing the Divide: How Medical
Homes Promote Equity in Health Care: Results from The Commonwealth Fund 2006 Health
Care Quality Survey, The Commonwealth Fund, June 2007.
10 Isetts, et al. (2008.) Journal American Pharm Assoc. 48(2):203-211.
11 Leff B, Reider L, Frick K et al. (2009.) Guided care and the cost of complex health care: a
preliminary report. American Journal Managed Care, 15(8):555-559.
12 Rosenthal, T. C., M. E. Horwitz, et al. (1996.) Medicaid Primary Care Services in New York
State: Partial Capitation vs Full Capitation." Journal of Family Practice, 42(4):362-368.
Monday, June 7, 2010
Health Care Ad Wars
All sides in the health care debate -- which seems never-ending -- are gearing up to either defend or destroy implementation of health care reform. The Republicans in Congress already have introduced a bill to repeal what they are calling Obamacare, whereas health reform supporters are campaigning to teach the public what they have to gain from the law, the NY Times reports. As $250 checks go out this week to seniors with Medicare Part D (drug benefit) to help compensate them for the coverage gap (known as the doughnut hole), many organizations are holding education seminars and meeting with media to tout the early signs of improvement -- coverage of kids to age 26, elimination of pre-existing condition exclusions for kids under 19, the creation of a web portal that will allow people to shop for insurance, and the new high risk pool -- while opponents are screaming about the non-existent government take over (really, when will they stop lying? I'm all for intellectual disagreement, but not when it's not truthful) and the cost of health reform.
Me? I record on my DVR so I can fast forward through commercials -- ALL commercials. J
Me? I record on my DVR so I can fast forward through commercials -- ALL commercials. J
Friday, June 4, 2010
COBRA Subsidy Extension in Critical Condition
In March 2009, due to the high rate of unemployment, the federal government began to pay 65% of the COBRA premium for people who were involuntarily unemployed. This avoided a huge increase in the ranks of the uninsured. However, the COBRA subsidy expired on June 1; Congress left for a 10 day Memorial Day recess without extending it. Huffington Post reports the story here.
However, Congress can extend the COBRA subsidy (and unemployment) when they get back next week, retroactive to June 1, if they choose to do so. But they won't do it unless they hear from US that it's a high priority.
So call or write your members of Congress NOW. Today. This minute. Please. Contact information for the Senate is here; contact information for the House of Representatives is here.
If you want to email, here's a sort of template that you can use, but if you have a personal experience, or a friend or family member with a personal experience, telling real stories is always the best thing to do.
Feel free to use that or some version thereof -- but really, if you're directly affected, or if you know someone who is affected by the lapse of the COBRA subsidy, tell your story instead. That will make the most difference. Thanks. Jennifer
However, Congress can extend the COBRA subsidy (and unemployment) when they get back next week, retroactive to June 1, if they choose to do so. But they won't do it unless they hear from US that it's a high priority.
So call or write your members of Congress NOW. Today. This minute. Please. Contact information for the Senate is here; contact information for the House of Representatives is here.
If you want to email, here's a sort of template that you can use, but if you have a personal experience, or a friend or family member with a personal experience, telling real stories is always the best thing to do.
Dear __________:
As you know, the COBRA subsidy that was initiated by Congress in March 2009 to prevent the involuntarily unemployed from becoming the involuntarily uninsured, as well, expired on June 1, during Congress's Memorial Day recess. If the COBRA subsidy is not extended at least through the end of the year, many thousands of people will become uninsured. Not only will this create hardship for them, but it will increase the financial burden of paying for charity care that inevitably falls on the shoulders of the taxpayers. Our money would be better spent by ensuring that the involuntarily unemployed are allowed to continue to receive the COBRA subsidy until the job figures begin to show a rebound in hiring. Thank you for your consideration.
Feel free to use that or some version thereof -- but really, if you're directly affected, or if you know someone who is affected by the lapse of the COBRA subsidy, tell your story instead. That will make the most difference. Thanks. Jennifer
Thursday, June 3, 2010
Advocacy for Patients' Comments on Draft Regulations Covering Children to Age 26
June 3, 2010
VIA RULEMAKING PORTAL
Office of Consumer Information and Insurance Oversight
Department of Health and Human Services
Attention: OCIIO-4150-IFC
PO Box 8016
Baltimore, MD 21244-1850
Re: Amendments to 45 CFR Parts 144, 146, and 147 Regarding Insurance
Coverage of Children to Age 26
Dear Sir/Madam:
Thank you for this opportunity to comment on draft regulations governing health insurance coverage of dependent children until age 26. Advocacy for Patients with Chronic Illness, Inc. is a 501(c)(3) organization that provides free information, advice, and advocacy services to patients with chronic illnesses nationwide. Of particular relevance here, we assist people with chronic illnesses to find health insurance that covers their pre-existing conditions, and we file many insurance appeals for coverage of items that insurers believe either are not medically necessary, or are experimental or investigational. These comments are based on our experience of working with thousands of people with chronic illnesses who, by definition, have pre-existing conditions that make it very difficult to obtain insurance coverage.
We very much support the addition of Section 2714 of the Public Health Service Act by the Patient Protection and Affordable Care Act (PPACA). We believe that the regulations are consistent with Congressional intent to cover the broadest possible group of people who otherwise would have to find health insurance on their own at a time when they are students or are unemployed, just entering the workforce. Thus, we support the broad definition of “dependent” to include children who are not living with their parents, who are not financially dependent, who are students, or who are employed but not eligible for health insurance through an employer. It is our understanding, though, that Congress also intended to include, as a dependent, children who are married (although not their spouses). We would urge you to add language and/or an example to that effect.
Our primary concern, though, relates to the transitional rules found in 45 C.F.R. § 147(f). The draft regulations provide that notice may be given to the employee. We would suggest that, especially if the employer’s plan formerly covered the dependent and, thus, has an address for him or her, notice should go to the dependent, as well. Not all employees will convey this opportunity to dependents in the context of divorces and other family-altering events. If notice to the dependent is feasible, it should be required.
Second, and most importantly, the draft regulations state that the portability rules of HIPAA apply, and you have given several examples. What the draft regulations do not expressly address, though, is coverage of pre-existing conditions. In section (f)(5) example 1, the dependent has had a break in coverage of more than 63 days. Although the draft regulations make it clear that this dependent is eligible for enrollment, the draft does not state that the dependent’s pre-existing condition is covered despite the break in coverage. This is not a hypothetical question; we already have fielded this question, and have been unable to find an
unambiguous response. Thus, we strongly urge you to address this issue explicitly. It is our belief that Congress’s intent was to construe these provisions broadly, and that the dependent’s pre-existing condition should be covered when they re-enroll in their parent’s plan. However, without clear language on this issue, you can expect disputes to arise.
Again, thank you for this opportunity to comment on these important regulations. We very much appreciate your consideration of issues that will affect the lives of the people with chronic illness whom we represent.
Sincerely,
Jennifer C. Jaff, Esq.
Executive Director
VIA RULEMAKING PORTAL
Office of Consumer Information and Insurance Oversight
Department of Health and Human Services
Attention: OCIIO-4150-IFC
PO Box 8016
Baltimore, MD 21244-1850
Re: Amendments to 45 CFR Parts 144, 146, and 147 Regarding Insurance
Coverage of Children to Age 26
Dear Sir/Madam:
Thank you for this opportunity to comment on draft regulations governing health insurance coverage of dependent children until age 26. Advocacy for Patients with Chronic Illness, Inc. is a 501(c)(3) organization that provides free information, advice, and advocacy services to patients with chronic illnesses nationwide. Of particular relevance here, we assist people with chronic illnesses to find health insurance that covers their pre-existing conditions, and we file many insurance appeals for coverage of items that insurers believe either are not medically necessary, or are experimental or investigational. These comments are based on our experience of working with thousands of people with chronic illnesses who, by definition, have pre-existing conditions that make it very difficult to obtain insurance coverage.
We very much support the addition of Section 2714 of the Public Health Service Act by the Patient Protection and Affordable Care Act (PPACA). We believe that the regulations are consistent with Congressional intent to cover the broadest possible group of people who otherwise would have to find health insurance on their own at a time when they are students or are unemployed, just entering the workforce. Thus, we support the broad definition of “dependent” to include children who are not living with their parents, who are not financially dependent, who are students, or who are employed but not eligible for health insurance through an employer. It is our understanding, though, that Congress also intended to include, as a dependent, children who are married (although not their spouses). We would urge you to add language and/or an example to that effect.
Our primary concern, though, relates to the transitional rules found in 45 C.F.R. § 147(f). The draft regulations provide that notice may be given to the employee. We would suggest that, especially if the employer’s plan formerly covered the dependent and, thus, has an address for him or her, notice should go to the dependent, as well. Not all employees will convey this opportunity to dependents in the context of divorces and other family-altering events. If notice to the dependent is feasible, it should be required.
Second, and most importantly, the draft regulations state that the portability rules of HIPAA apply, and you have given several examples. What the draft regulations do not expressly address, though, is coverage of pre-existing conditions. In section (f)(5) example 1, the dependent has had a break in coverage of more than 63 days. Although the draft regulations make it clear that this dependent is eligible for enrollment, the draft does not state that the dependent’s pre-existing condition is covered despite the break in coverage. This is not a hypothetical question; we already have fielded this question, and have been unable to find an
unambiguous response. Thus, we strongly urge you to address this issue explicitly. It is our belief that Congress’s intent was to construe these provisions broadly, and that the dependent’s pre-existing condition should be covered when they re-enroll in their parent’s plan. However, without clear language on this issue, you can expect disputes to arise.
Again, thank you for this opportunity to comment on these important regulations. We very much appreciate your consideration of issues that will affect the lives of the people with chronic illness whom we represent.
Sincerely,
Jennifer C. Jaff, Esq.
Executive Director
It's About Time
Federal employee domestic partnership benefits are extended further, the Washington Post reports here. Good call. Jennifer
Can we really save money on health care without sacrificing quality?
The New York Times asks the question anew here. I think there are things that can be done. I think, for example, if you're a patient with several chronic illnesses, you end up having duplicate blood work done and that's waste. But the NY Times points out that the data used by the White House in coming up with cost estimates of reform didn't take quality into consideration -- it just compared the cost of care in expensive states to the cost of care in less expensive states, without looking to see if the death rates in the less expensive states were higher (duh? Is it possible that the White House was that stupid?).
Since I no longer believe the NY Times without a lot of skepticism, I don't know the answer to this question. We may just have to wait and see. Jennifer
Since I no longer believe the NY Times without a lot of skepticism, I don't know the answer to this question. We may just have to wait and see. Jennifer
Wednesday, June 2, 2010
Crisis in Primary Care
More about the crisis in primary care here. There are fewer and fewer primary care providers, and the good ones are hard to find. Many are not taking new patients. But persist. I can tell you from personal experience that having a primary care provider who's caring and knows you and shares your history makes all the difference in the world.
This one's for Jack Schmetterling (a/k/a Dr. Jack). They don't come any better. J
This one's for Jack Schmetterling (a/k/a Dr. Jack). They don't come any better. J
How to be a Good Patient
Especially when you have a chronic illness, the relationship between you and your doctor is one of the most important relationships in your life. That 10 minutes every 3-4 months better be used well. After all, studies show that if you participate in your care, you will have better health outcomes, so don't think you're a passive observer; you have a job to do, being a patient. Here are some tips.
Write down your questions in advance.
Keep a diary of your symptoms.
Maintain a medication list on your computer, making changes when necessary, and print out and bring a copy to every doctor appointment.
Take notes on what your doctor says.
Know your medical history.
Be honest about your lifestyle. Smoking, drinking, exercise (or lack thereof).
Ask if the doctor uses email or fax and if those are good ways to reach her.
That's a start, anyway.
Write down your questions in advance.
Keep a diary of your symptoms.
Maintain a medication list on your computer, making changes when necessary, and print out and bring a copy to every doctor appointment.
Take notes on what your doctor says.
Know your medical history.
Be honest about your lifestyle. Smoking, drinking, exercise (or lack thereof).
Ask if the doctor uses email or fax and if those are good ways to reach her.
That's a start, anyway.
Tuesday, June 1, 2010
Pelosi Says COBRA Subsidy, Aid to States Not Dead
Huffington Post reports that the extension of the COBRA Subsidy, aid to states for Medicaid aren't dead yet. Let's hope she's right. J
The Age 26 Rule -- Your Employer may say NO!
Even if your insurance company agreed to implement the rule covering young adults to age 26, if you're in a self-funded plan, it's up to your employer -- and your employer may say no, according to the NY Times. Jennifer
Government Monitoring of Health Reform
Who's watching the insurer to make sure it all happens right? Here's the answer. Jennifer
So Tired I Could Cry? Gues it's Not Just me
According to the NY Times, the phrase "nervous breakdown" is being substituted for "vital exhaustion" or burnout syndrome. Whatever it's called, I have it, and I don't know how to make it go away. Neither does the NY Times, here. Jennifer
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