Thursday, September 30, 2010
By limiting administrative costs, not only should dollars spent on health care lead to increased quality, but premiums should come down because insurers will not be allowed to build in huge salaries and bonuses. NAIC's process has been long but very transparent and fair, allowing for comments at all stages of the process.
This is a critical piece of the health reform puzzle. Congress was right to delegate it to the NAIC. Jennifer
And here's more on the controversy about the value of mammograms.
WaPo gives us 5 questions to ask the doctor before we agree on tests or treatment.
The LA Times says it's the 9th annual women's health and fitness day. I'll swim and eat my veggies and fruit. What will you do?
And insurers are looking to base provider networks on quality of care. Will this improve health quality or just restrict patients' choices?
HuffPo reports that the House passed a health care plan for first responders at Ground Zero. Finally.
That should keep you busy for a little while!!! Jennifer
Wednesday, September 29, 2010
He's getting some real push back these days, but it's good to see him out there defending his policies. Jennifer
The LA Times tells us to take our meds at the right time so we get maximum effect and avoid adverse interactions.
They also have a whole series of articles about Celiac disease.
Politico reports on Michelle Obama's advocacy for the health care law.
And HuffPo reports that the appeals court is allowing stem cell research to continue until it hears the appeal of the case that struck down stem cell research in a couple of months.
That's about it. Jennifer
Tuesday, September 28, 2010
I didn't mean that in the context of my weight. Over the last few weeks, we've been talking about wanting to work less, letting the Advocacy for Patients board take some ownership and responsibility for fundraising, and while I consciously believed that the weight issues had taken me to larger, lifestyle issues, I sort of left the weight issues behind. After all, my weight is stagnant no matter what I do, so maybe focusing on lifestyle and work will lead to some epiphany.
Wouldn't you know that the lifestyle and work issues led me right back to my weight.
I've had a very rough couple of weeks. I found out that the fundraiser that was supposed to generate enough money to hire another full-time lawyer and move us out of my house got canceled, and there went my best laid plans. When I told my Board about what happened this past Saturday, I said that I had failed to find a way to finance the growth -- and all I felt was failure. I sort of forgot about my efforts to get them to take some ownership; I was stuck in that feeling of failure.
Today, when I went to tell Ellen what was up, I felt like a failure at a lot of things -- fundraising, motivating my Board, and being a good patient who remembers all the things she's supposed to say and doesn't get distracted. But every time Ellen tried to direct me to talk about how I feel about all this disappointment, I went back to: What am I going to do about Advocacy for Patients?
Finally, Ellen said "why don't you want to talk about your disappointment?"
I didn't know.
And then she said "is this also disappointment about your weight?"
You mean failure? Hmmm. Yeah, I guess so.
And there's the connection; we're back to my weight.
And yes, I feel like a failure. I changed my diet. I've been cooking, for goodness sake -- not something I would do if I wasn't trying really hard. I've been swimming every morning. I know I've greatly reduced the quantity of food I'm eating, and I'm sticking with cooked veggies and fruit even when my gut says it's not a good idea. Why can't I lose any weight?
Ellen had told me a few weeks ago that it was time to talk to the doctor about it. I mentioned it to him, but I've had him focused on some more pressing things -- getting my insurance company to approve my meds. And I knew he wouldn't get involved until he saw the results of my sleep study, which he is hoping will be the answer to all of my problems. That's tonight (ugh. They don't let you bring cats. What's Emily going to do all alone?). So I've sort of been in a holding pattern. At least, I thought I had successfully set it aside. But the truth is that I do feel like a pretty big failure, and there's no question that this is part of the reason why.
And then the session was over, which really stinks when you don't feel like you've resolved anything or come to a stopping point.
But it's clear; my failures begin and end with my weight. When do I stop beating myself up over things that appear to be out of my control? When do I give myself a break?
I know people think I'm tough on those around me. I think I'm tougher on myself than on anybody. Jennifer
Here's a scary story about a patient's journey that could have been resolved quickly and easily with a simple blood test earlier on.
How to be a good health care consumer -- ask questions before you leap into treatment.
A study shows that dying at home is less traumatic. Did they really need a study to show this?
Politico says some Dems are running on health reform, not away from it.
That should start your day off! Jennifer
Monday, September 27, 2010
But most of all, what I find a challenge is that I can't really have a bad day or a bad few days and write about it. When I post anything even remotely negative on Facebook, I feel like I have to delete it because nobody should think the head of this organization is human enough to make a mistake or have a bad day or anything like that. I post about my weight journey as a way to share something that has a direct impact on health with other people in the hope that it will do some good. Exploring the ways in which my inner demons affect my weight seems like a positive use of my inner demons. But talking about anything else negative -- am I allowed?
But I am not perfect, and I have failed to get Advocacy for Patients to a point at which we can move into real offices and hire Nicole, my cracker-jack part-time law student, full-time when she graduates in December. It's been causing me tremendous angst. I had a plan for all this, but it failed because I was working with a partner organization that decided to bag it -- and didn't even have the good graces to tell me about it. My bad judgment for teaming up with them, I suppose. Surely, it's my fault, and I take that responsibility.
Is it terrible to expose the fact that Advocacy for Patients isn't immune to the economy, or even to a bad decision on my part? Or will I be offered help only if I expose the truth, that I need the help? Is it my job to seem strong, impervious to being stressed or down, for the sake of this organization? Can the organization survive with a frail human at the helm? Is writing this now a mistake?
I don't know the answer. I know that some of you will have answers -- those who support me and Advocacy for Patients will tell me it's fine to be human. Those who only want to give money to an organization with a perfect veneer may not give as a result. Am I taking a risk by writing this?
Nobody's perfect, and you don't get to be more perfect simply because you run a nonprofit. There are good times and bad, happy times and sad, and loads of imperfections that are inevitable because I'm human. Will Advocacy for Patients survive? Certainly in the short-term, of course. Have I done anything that should make people NOT want to support us? I don't think so -- I did trust another organization and partner up with them, but I wasn't alone in thinking that was a good idea. Indeed, the alliance was formed by our largest funder. Should I have trusted less, given less?
My basic theory is that I should be who I am, warts and all, because people need to see that I'm human. I don't want people to feel that I'm so perfect that I'm intimidating, and I'm told all the time that I am intimidating, although why escapes me.
I don't know. This whole thing about being public or quasi-public is strange to me. I never said I was perfect. I have bad days like everybody else. And not just about my weight. And I've never run a nonprofit before, so sure, there are things I am going to try to do that I can't pull off. Maybe someone else could, but I'm not perfect. Does that mean you shouldn't donate to Advocacy for Patients? In my opinion, it means that you should trust me more because I'm willing to tell you about my imperfections. Anybody who claims to be perfect is lying.
But there are appearances. I can hear it in my head, someone telling me that it's about LOOKING strong. I shouldn't air dirty laundry. Is it dirty laundry to admit that I'm less than perfect all the time?
I honestly don't know. When I started Advocacy for Patients it wasn't about making myself a public person. It wasn't about me at all. It was about the people in need. The fact that I'm the face of the organization -- I sort of wish we had a celebrity spokesperson so I wouldn't have to be that face. I never asked for this part of the job, and I wasn't really expecting it.
I'm tired -- bone tired. And I do feel like I failed to get us to where we need to be in order to grow consistent with the demand for our services. I also know that there's not one more thing I can do that I haven't done. There are no more hours in the day, no more breath in my lungs, no more tears to shed, no more support to give -- I'm doing everything I am capable of doing.
And maybe that's the point. If my shortcomings are Advocacy for Patients' shortcomings, then making my shortcomings public reflects badly on Advocacy for Patients. But then isn't the opposite true, that my strengths reflect well on Advocacy for Patients?
I hope that people don't give less or do less for Advocacy for Patients simply because I am human. Because whether I let you see how human I am or not, the fact is that I am human and flawed and so is everybody. The fact that I let you see it once in awhile should help you to trust me because you know I'm not hiding or faking or anything like that. What you see is what you get.
Frankly, for me, I don't care. But I care for Advocacy for Patients. For Advocacy for Patients, I would like to be perfect. Unfortunately, even for Advocacy for Patients, perfect is not human, and I am human. I hope that doesn't make you think less of what is more and more a truly great organization that's about so much more than just me. Jennifer
With cancer drugs costing $100,000 per year, how much is a life worth? And the same thing here? From WaPo and HuffPo.
The LA Times says half of gay men affected with HIV don't know it.
Sunday, September 26, 2010
The LA Times also talks about alternative medicine, which may be helpful, but which won't be covered by insurance.
And more about that poll saying Americans wish health reform had gone further. And more here, as well.
Saturday, September 25, 2010
Friday, September 24, 2010
WaPo follows up on yesterday's 6 month anniversary of reform.
The LA Times gathers politicians' sound-bytes on the 6 month anniversary of reform.
Watch out for my op-ed in tomorrow's Hartford Courant celebrating the 6 month anniversary of reform. Jennifer
Thursday, September 23, 2010
- No more pre-existing condition exclusions for kids to age 19
- Kids to age 26 can stay on their parents' policy
- Preventive care is free -- no copays or coinsurance
- The new appeals provisions, including independent review, kick in
- No more retroactive cancellations of policies
- No more lifetime limits, and annual limits can't be less than $750,000 this year, phasing out over the next couple of years
- No prior authorization required for emergency room care
- Women can see ob-gyns without a referral
A collection of press:
Some people see relief starting today. One family's story. Another family's story. And another's. Read those stories and tell me that health reform isn't making a difference in people's lives.
The President visited with several people being helped by reform yesterday. He touted the new changes, explaining why health care was a major priority for his Administration, and he expressed regret that he has not done a better job of explaining to law to Americans. Others opined that this is the most significant piece of legislation in decades. The NY Times graded health reform implementation to date. HHS Secretary Sebelius focuses on what the changes mean for kids.
But there is no denying that health reform wasn't a major boost for the Democrats that they thought it would be. Americans remain skeptical, especially because of the steady drum beat of misinformation that has been spread by opponents of reform. And opponents continue to threaten to undermine or repeal the law if they take control of Congress in November.
From the insurer's perspective, there's a lot to change in a short time. Some even threaten to pull out of the individual market if the major cost-control provision -- what's called the medical loss ratio -- isn't phased in over time rather than taking effect in 2011.
From my perspective, I now have options to offer to people that didn't exist before. It's far from perfect, and many major provisions of the law don't take effect until 2014. But this is a great start that is making a real difference in the lives of millions of Americans.
From my perspective, this is something to celebrate. Jennifer
P.S. - A late addition, but I couldn't resist posting a link to this excellent piece by Connecticut's own Congressman John Larson.
Wednesday, September 22, 2010
A good Q & A about the changes that take effect tomorrow.
AP says it's been 6 months and people still don't know what the law says (I try).
President Obama has good things to say about reform.
HHS Secretary Sebelius tries to combat the drumbeat of misinformation.
USA Today has a summary of those aspects of the law that take effect tomorrow.
Politico reports on the continuing controversy over reform.
Meanwhile, the White House braces for de-funding of reform if GOP takes Congress.
And finally, WaPo reports on the difficulty in implementing the new law.
There undoubtedly will be more today and tomorrow, and I suspect I'll have a little something to say about this, as well. But if there was one message I could get across to you, it's that you MUST read and listen and learn for yourselves, and then judge. The misinformation is coming from powerful places like FOX News. None of us can really match that loud a voice. The only antidote is knowledge.
If you have questions, email me at email@example.com. Jennifer
Tuesday, September 21, 2010
In the meantime, I've looked at housing prices in Vermont and New Hampshire, while also knowing that there is no way I have the energy to pack up and move myself again. I looked at flights to go see my friend Jan in Florida but there weren't any non-stop flights, and I couldn't figure out dates, so I bagged it. I fantasized a lot about how I would do things differently if I could start over again -- I'd stay at the Attorney General's Office, have a pension, have vacation time, and have a really interesting job that would stay at the office when I left. And I ran numbers to see how long I could go without working at all, even thinking for the first time about whether I could get disability (which I couldn't right now since on paper I'm actually in pretty good shape except for the 15 prescription meds I have to take every day). I've felt sad and trapped and confused and angry, and I haven't really understood why.
There simply is no middle ground in my life. I want to be rescued, but that's long gone -- perhaps I should have been helped more when I was younger, but now I'm a 53 year old woman and nobody's going to rescue me. I'm angry that nobody -- the Advocacy for Patients Board, my father, a handsome stranger -- will bail me out of this fix I'm in.
And when I get angry, I go to the other extreme -- not only do I not want to be rescued, but I become fiercely independent and must do everything all on my own. I take the anger that comes from feeling like I'm totally alone in this and use it as energy to wall off the rest of the world and feel trapped because I have to do it all alone.
I don't seem to get that there's a middle-ground between being rescued and doing things completely on my own. Like asking for help, getting people to agree to take steps that would make things better, and then counting on them to follow through. If I could ask for help, I could never really rely on it. Nobody ever comes through the way they say they will, right? That's been my experience.
But the truth is that I have a problem. Advocacy for Patients has a problem. We've grown as much as we can grow and have me do everything on my own. I no longer can do all the work. I can't raise the money and give the speeches and work the cases and write the books and manage this blog and the Facebook page and master health reform and comment on regulations and be a presence in Connecticut public policy and do the accounting and payroll and ... and ... and .... I can't do it. But really, I don't want to drive myself into the ground, either. I want to swim for an hour instead of 1/2 hour. I want to have energy to have dinner with friends. I want a life.
And really, I'm so strung out and exhausted that I also can't figure it all out. Can we afford to move and hire Nicole full-time? That means raising somewhere between $60 and 80,000 more next year than we did this year and last. I have no reason to believe that I am capable of doing that. I'm not sure if anybody could do that for this organization. We need another "angel," another sponsor who loves us like Mike McCready and his wife do. I've written a zillion grants. It's just not happening. We aren't legal services because we don't go to court, we aren't health care because we don't have a clinical component, we are too small for the national foundations, we are too national for the Connecticut foundations -- we just don't fit the regular categories. If we moved to the Law School as I'd like to do, we'd seem bigger to funders and that would help, I think. But I don't know where to get another $60,000. Around this time of year, I feel lucky if we meet our annual budget. This year, we had the NIH grant and a grant to build our IVIg Patient Resource Center, but that's not going to happen again next year. We do hope to get another grant to follow up on our NIH study, but who knows how long that will take? Next year feels even more daunting than this one, and that's without an extra load of debt.
So we can move -- I'm pretty sure we can afford that -- and I can keep having student interns (hopefully). I can even probably afford a part-time law student like Nicole is now. But can I afford Nicole full-time? I promised her an answer after Saturday's Board meeting, and so I have to figure this out.
But I think this is what Ellen was trying to tell me today: I don't have to figure it out alone. While some of the Board are pretty certainly not going to help raise money, there is the amazing Laura T., who may be the only thing standing between me and a total nervous breakdown!!! She's a marketing whiz and she has a ton of ideas. I feel funny about leaning so heavily on her, but I think she'd smack me if she heard me say that. The rest of the Board should figure out some way to help, too.
The worst thing that happens is that I pull back. I stop writing comments on regulations and other things that I feel are important, but not essential to providing services to the people who need us. And we stay in my house. And I keep recruiting law students as interns so at least there's somebody to go to the library for me.
But this is the wrong answer. It can't be either I get some help or I do it alone. Doing it alone has to be ruled out as an option. I think that's what Ellen was trying to tell me today. I need help. Nobody runs an organization of this size alone. I am already doing too much, and I am paying such a price for it that I can't even decide when to take a vacation because I'm too tired to decide anything. Forget the big rescue; forget doing it alone. Laura's supposed to be chairing a marketing committee. How about figuring out who else is on that committee and making them do some work too?
I'm fried, and I don't have any answers and I'm tired of thinking. I'm going to figure this out, but not today. Step one, though, must be asking for help. I know I can't do it alone. And please -- I don't need ideas. The last thing I need is a longer list of things to do. I need help.
Anybody want to join the Advocacy for Patients Board?!!! Jennifer
To the Editor:
In “When a Doctor’s Note for a Student Doesn’t Help” (18 and Under, Sept. 14), Dr. Perri Klass notes that chronic absenteeism can lead to a student’s being held back. Essentially healthy students, yes; but students with disabilities cannot be held back or charged with truancy for being absent. Instead, schools and parents should negotiate a plan of accommodation that explains exactly what will happen if students are absent because of illness — how they will get their homework assignments, which ones are critical and which will be waived, and so on. As long as they can document their chronic illness, students cannot be punished for being sick.
Jennifer C. Jaff
The writer is executive director, Advocacy for Patients With Chronic Illness.
Here's an interesting guy.
The NY Times says there are too many of you who don't follow up on colon cancer screening. It's so easy to treat and cure if caught early. GO! The NY Times also says we can have a massage without the guilt. So do your colon cancer screening and reward yourself with a massage!
And then measure your consciousness.
WaPo writes about medical homes, a great innovation that will help people with chronic illnesses coordinate their care.
Politico says that now that kids can't be excluded due to pre-existing conditions, the insurers' response is to refuse to cover them at all. They refuse to be part of the solution, despite record profits.
Finally, HuffPo says the part of health reform the GOP likes the most is the high risk pool. Expensive and you have to be without insurance for 6 months to qualify, do you agree that this is the centerpiece of fixing our broken system?
As my friend Susan would say, bless their hearts. Jennifer
Monday, September 20, 2010
NY Times says your friends and family can help you get healthy.
WaPo asks whether it's time to bring back old age as a cause of death.
Politico explains why repealing health reform is harder than it sounds.
And USA Today talks about the big fraud haul from Medicare -- and these were the cuts in Medicare the anti-reformers were screaming about. Still sound like a bad idea?
Saturday, September 18, 2010
Friday, September 17, 2010
Thursday, September 16, 2010
But now I've read every word and WOW. WOW. That's an understatement. WOW.
Wendy has Wegener's granulomatosis, an autoimmune disease that has cost her dearly in many ways, and that can become life-threatening, as it has for her a couple of times. And like any autoimmune disease, it comes with lots of secondary complications. Although my autoimmune disease is Crohn's disease, and Wendy has far less to say about shit (would you like it better if I called it feces? number two?) than I would, I surely did identify with her when she recounted her experience with a liver biopsy (which does hurt as much as she says it does), and with doctors who don't get her, and with the struggle to be the master of one's own fate when one's fate is in the hands of ... well, one's own immune system.
Wendy's search for answers took her to many of the same places my search has taken me, although she is far braver than I. I have read all the books, but I've never actually tried a colonic, and as someone who lives in dread of the next time she has to prepare for a colonoscopy, I'm pretty sure I never will. But I've read Pema Chodron and dabbled in Buddhism (Wendy, try Peace Is Every Step by Thich Nhat Hanh) and gone to Omega conferences and tried and tried and tried to meditate. Madonna's not my thing, but James Taylor and Bruce Springsteen and Advocacy for Patients' lifeline, Mike McCready of Pearl Jam, are major forces in my life. I've not lost my hair, thank goodness -- I don't know how to cope with that and I'm not sure what I'd do if I were faced with the need for a treatment that would have that effect, although the chemo drugs I'm on surely change the texture and appearance of my hair (not to mention my skin, nails, etc.). But I've had my own versions of hell; indeed, you don't know true living hell until you've been fecally incontinent in your sleep, as far as I'm concerned.
In short, after reading this book, I feel that Wendy and I are soul sisters.
Her book is funny; at least the first half of it is. But at some point, I got kicked in the gut by the familiarity of it all and, although Wendy's use of language is very funny and smart, I lost my sense of humor about the whole thing and just started to cry. I'm still crying. Like Wendy, there are moments in the coping "journey" (I hate that "journey" word -- it's way too picturesque and pleasant) when the waterworks get turned on and they just won't shut off. Reading the last quarter of Wendy's book while alternating between email and phone calls with patients who need my help was quite a challenge!!! Even now, the tears are here.
I wondered how the book was going to end. When Wendy stopped taking her meds and actually got better, I thought AHA! She's found the answer! I was ready to run downstairs and throw all my meds into the trash and follow Wendy off the deep end. But alas, there is no victory here, no end of the road. Wendy could have kept writing, I suspect, and probably will. Because this story doesn't end as long as we are alive, and in my experience, every answer is either transitory and/or yet another step along the way -- to what, I don't know, but we keep going.
I want to publicly thank Wendy for writing such a courageous book full of life lessons and sisterhood. And most of all, I really want to thank her for sending me a copy. Because I have piles and piles of books here to read. This one went to the top of the pile because I had to review it by its in-store date of September 7. It came at a perfect time for me, as I am going through my own personal upheaval (yet again), trying to figure out how better to live this half-life I've been given, how to take better care of myself.
How to be my own Guru.
Wendy, what that woman said to you about being a healer? You are. Thank you.
And for the rest of you, whether or not you are sick, if you do not go out and buy a copy of this book TODAY, you are missing out on a great pleasure, a great treasure, and a great set of life lessons. You will laugh. You may cry. You definitely will learn. And most of all, you will wish for Wendy's abundance of courage and grace. With gratitude, Jennifer
I still say repealing the law is not the answer. We need more health care, not less. But 2014 can't come fast enough -- that's for sure.
Did you know that the feds would pay if States expanded Medicaid voluntarily in advance of 2014? Or that some States have already implemented medical homes, primary care case management, and are even working at setting up an Exchange sooner than 2014?
Your State can be doing more to help you. You should be yelling and screaming about this. This problem does not get solved by shrinking government; it gets solved by making government work for us. Jennifer
Wednesday, September 15, 2010
Should the doctor hold the patient's hand? Read one story here.
WaPo reports that lots of us, including doctors, work while sick.
Politico says the White House is gearing up for a defense of health reform. About time.
Happy reading. Jennifer
Hartford, CT (September 15, 2010) -- Advocacy for Patients with Chronic Illness, Inc. (“Advocacy for Patients”) – one of the only organizations in America that files free insurance appeals for consumers with chronic illness nationwide – today filed comments with the United States Department of Health and Human Services, Department of Labor, and Internal Revenue Service (“the Agencies”) both complimenting the Agencies for “the thoughtful approach taken by the Agencies in formulating these complex rules,” and suggesting numerous improvements that should be made.
Advocacy for Patients brings a nuts-and-bolts perspective to the regulations, basing its comments on specific cases it has handled, and asking the Agencies to further refine the rules to ensure that unjust results are eliminated by making the process increasingly fair to consumers.
Here are some of the problems Advocacy for Patients has faced repeatedly:
· Insurers fail to provide an address to which to send the appeal. In one case, it took mailing a 350-page appeal three different times to three different addresses in order to succeed in the appeal, thereby delaying care significantly.
· Insurers fail to process appeals. For example, one insurer delayed ruling on an appeal involving treatment for lung cancer for more than five months, repeatedly stating that the appeal was in process when, in fact, it appears to have been lost.
· Insurers fail to acknowledge receipt of appeals, and even to mail appeal decisions. In one case, an insurer claimed to send its denial letter out months ago, but it was not received by either the doctor or the consumer. When the insurer finally sent its denial letter, it was too late to file subsequent appeals, and the State Insurance Department refused to compel the insurer to allow the subsequent appeals.
· Plans base their final decisions on entirely new grounds, depriving the consumer of an opportunity to address new reasoning. In one case, the insurer came up with a new rationale at the eleventh hour and would not allow the consumer to respond despite the fact that she was in the hospital deathly ill at the time and had no other means of treatment.
“Although many insurers are fair and equitable, and take appeals quite seriously,” said Advocacy for Patients’ Executive Director Jennifer C. Jaff, Esq., “insurers too often violate consumers’ rights by losing appeals, informing consumers that they are not allowed to be represented by counsel, refusing to provide a copy of the claim file, and even simply ignoring appeals that were received but not processed.” These failures should be addressed by the new regulations.
Specifically, Advocacy for Patients recommended the following:
· Insurers should have to provide an address where appeals should be filed, inform consumers that they can be represented in their appeal, and mail a confirmation of receipt of an appeal to the person filing the appeal.
· If an insurer does not decide an appeal within applicable time limits, the appeal should be deemed granted.
· If a consumer credibly states that he or she did not receive a notice of adverse decision, the time for appealing should be extended until the consumer actually has a notice of the decision.
· When an insurer or outside reviewer bases a denial on new grounds not previously asserted, the consumer should be given an opportunity to respond to that new ground before a final decision is issued.
· There should be some consequences if an insurer does not respond to a request for a copy of the claim file – something to which all consumers have a right.
“It is particularly important for Advocacy for Patients to comment on these regulations,” said Jaff, “because we are among very few organizations that file health insurance appeals on behalf of consumers nationwide, so we can compare things that work in some States – like Maryland and Massachusetts’ notice provisions – and things that don’t in others – like Delaware’s refusal to hold Blue Cross responsible for its errors.” “Sitting in Washington, it may be difficult to realize how often insurers break the rules because the rules leave room for unfair maneuvers,” said Jaff. “We wrote to bring some of the more day-to-day, but significant, concerns to the forefront of the policy debate.”
Advocacy for Patients with Chronic Illness, Inc. is a 501(c)(3) nonprofit that provides free information, advice and advocacy services to patients with chronic illnesses nationwide in areas including health and disability appeals, Social Security disability, employment discrimination, family and medical leave, educational equity, and resource location.
The comments can be found here.
# # #
Tuesday, September 14, 2010
I do not want to work so hard any more -- there, I said it. I want to have time to swim longer. I want to be able to go to dinner with friends once in awhile. I am desperate -- desperate -- for a vacation. I do not want this life. It is sucking me dry.
I love the work, most of the time. I hate when people get nasty because I cannot solve their problem, and since I cannot be all things to all people, there are going to be problems I can't solve. I hate fundraising and I don't think I'm very good at it, try as I might. I've worked with a professional grant writer to get some lessons, but the biggest problem seems to be how small we are. How can we get bigger unless someone takes a chance on us? How can someone take a chance on us while we are so small? Circular.
This all kind of became clear to me when I wrote last time that the only time I lost weight without being sick was when I lived in Miami, taught a manageable schedule, swam a lot, and had fun. I know I can't get there today with the job I have. There is no room for health in my life. And that is emphatically not okay.
I don't want to leave Advocacy for Patients -- and let's be real -- if I left right now, there would be no more Advocacy for Patients. I'd hate to blow the strides I've made. I'd hate to leave people without someone to help them. But if I took a vacation right now, it would be tantamount to committing malpractice -- I have too many cases close to deadlines, in which I'm begging doctors for medical records. I'm trying to teach Nicole and Echo to do some of that sort of routine work, but nobody's at the point yet of being able to equal me in knowledge and output. And if I weren't as fast as I am, there's no way I would be able to stay on top of the mountain of work we have.
And since at least some of our Board thinks I could be doing more if I were healthier, I don't know how they are going to react to me telling them I want to do less. I may have to take a pay cut. I may have to hire someone more experienced than Nicole to come on board, and figure out how to pay that person. I don't know. But I do know that I have no life, that I can't get healthy working 15+ hours a day.
And so I am practicing what I have to say: I do not want to work this hard any more. I do not. What the Board will do about that is at least partly out of my hands. But I have made my decision. It's not about working at home. It's not about hiring staff. It's about me and my health and my state of mind. I do not want my life to revolve around work any more. I've given the last 25 years of my life to work. It's time I took some of that life back.
I'm scared to death. Work has defined me for so long. I don't know who I'll be without it. But I know I have to find out. Jennifer
WaPo documents something I'd already figured out for myself -- disability claims are increasing due to the economy. People who tried to tough it out in the workplaces despite illness are now saying they have nothing to fight for.
WaPo also writes about one of the first pieces of reform taking effect this month: elimination of lifetime caps.
That's an early read of the papers. More later. Jennifer
Monday, September 13, 2010
Sunday, September 12, 2010
And this about using an insurance broker. I hesitate to post this, not because brokers aren't (some of them) good and helpful, but because brokers are lobbying to have their fees included in the 80-85% of premium dollars that count towards health care costs (the medical loss ratio, if you've been following this blog), and I suspect that's why they pushed hard to get a nice article about them in the NY Times.
And Politico says if the GOP takes over, the first thing they do is de-fund health reform. So if you were about to get your kid on your policy, or if your kid was about to get pre-existing conditions covered, or if your lifetime limit was about to be eliminated, or if you need the Pre-existing Health Insurance Plan -- not to mention all the changes that are coming up in the next few years -- I hope you read this.
A light news day on health issues. Have a good one. Jennifer
Friday, September 10, 2010
Which makes it a medical issue. Which totally sucks.
I've been to nutritionists, dieticians, diet doctors galore over my lifetime. I have NEVER before started a diet and not dropped a quick 10-20 pounds. Even if I am not eating the smallest amount humanly possible, I've greatly decreased my caloric intake and increased my exercise. Something should be happening.
Ellen says she thinks the first place is to look at my meds. I take 15 different prescription meds. Nobody on earth understands how this particular combination interacts. In fact, we don't even know which ones are helping and which ones could be cut -- when I was deathly ill in 2002 and started seeing my Crohn's expert in Manhattan, she pretty much put me on everything there is, and nobody wants to rock the boat because I'm stable now. So messing around with my meds means taking a risk. I probably will try cutting back on one at a time to see what causes symptoms. That's the only thing to do. And what if my meds -- meds that are working and keeping my disease under control -- make it that much harder to lose weight? What if? I can't even go there.
I'm trying really hard not to be discouraged. I don't feel down, really. But I'm frustrated -- and I loathe the thought of getting involved with doctors. Interaction with the medical world typically makes things worse before they get better. I can feel it coming -- an endocrinologist because maybe it's my metabolism; yet another nutritionist; weekly trips to New York to see a fancy diet doctor. I just don't have it in me to go down this road.
But I desperately want to lose weight because I'm uncomfortable. Even if I just lost 50 pounds, I would feel better and my clothes would fit better -- it would be less than perfect, but better than nothing.
The truth is that there's only one time in my life when I lost weight NOT because I was sick. I lived in Florida. I taught, so I worked my own hours. I swam for at least an hour a day -- twice as long as I swim now. And I ate anything I wanted but only once a day. I lost 120 pounds. I was tan and fit. I also wasn't on hardly any medicine. I didn't work 15 hours a day. I had energy to burn. There were plenty of other things wrong with my life; emotionally, spiritually I am a much healthier person now. But physically, I was healthier then. And I don't know how to recreate that when I get up at 4:30 in the morning and work until 8 pm, when I have the weight of so many patients on my mind, and when I have the pressure of raising over $200,000 per year. I don't know how to completely change my lifestyle. I don't know if Advocacy for Patients could exist if I did.
But perhaps this is the next step with Ellen. She said today that this was the first time in our nearly 20 year relationship when I was willing to make major changes in my life, i.e., my diet. Well, maybe I need to make some more changes. Maybe we have to upend the whole thing. Because, frankly, I'm tired of being tired, in pain, and overworked. I don't know any other way to do what I do -- but maybe I need to find out.
What I can tell you is that I'm not giving up. I do not want to live like this for the rest of my life. I want to enjoy life. I love my work most of the time, but I hate fundraising, and I hate how the whole thing weighs on me. I can't imagine a life in which career is not my top priority, and I've really done a number on myself by setting up an organization that cannot function at all without me. But maybe these, too, are some life changes that I have to have the courage to confront.
Whatever it takes. Really. Jennifer
More about Secretary Sebelius's letter here.
But you decide for yourself. Read. Be educated. And reach your own conclusions. Jennifer
Thursday, September 9, 2010
However, WaPo says the same report says that costs will increase under health reform. But they will increase more slowly.
I guess we'd better find and read the report, which comes out in the journal Health Affairs today.
UPDATE: The article in Health Affairs is here. It's not very long. Read for yourself and be your own judge. J
Wednesday, September 8, 2010
I wonder how much of that money will be going to the patients who were harmed by their actions?
Watch out for our comments on the new appeals regulations. We'll be outlining the kinds of things insurers do wrong all the time. Hopefully, under the new law, that will change. Jennifer
I guess for some people, it's like food is for me. And I admit, there are moments when a cigarette looks really good. But they stink and they make you feel sick and it's so much nicer when everything you own doesn't smell of tobacco. Give it a try.
Here's a shout out to my friends Laura and Sari who are battling it back like heroes. Jennifer
Tuesday, September 7, 2010
Adult disabled children living at home may be eligible for Social Security benefits.
What will mental health parity mean for you? (LA Times)
Do you hear what your doctor says, or what you want to hear? (Boston.com)
Monday, September 6, 2010
Friday, September 3, 2010
PLEASE READ THIS. If we repeal health reform and return to the status quo or something even worse, let it not be because the American people were so easily duped into believing lies. And these are just a few of the doozies.
Become informed. Become empowered. Jennifer
Thursday, September 2, 2010
Several important provisions of the health reform law will take effect this month. September 23, 2010 marks the six-month anniversary of the signing of the reform law. While you may not feel like celebrating that fact, it's important to know that several of the law's provisions will kick in on that date or shortly thereafter.
First, two caveats. The effective date of these changes varies with your plan. For example, if you are in a group plan that works on a calendar year basis beginning on January 1, then these changes take effect for you on January 1, 2011 -- the beginning of the next plan year after September 23, 2010. If you are in an individual plan that renews on March 1, then the changes take effect for you on March 1, 2011 -- the beginning of the next plan year after September 23, 2010.
Second, some provisions do NOT apply to "grandfathered' plans. As you will recall, President Obama promised that if you are happy with the plan you have, you can keep it. Well, this is how he kept that promise. If you have a plan that existed on March 23, 2010 and does not change in any substantial way (keep reading), it is a grandfathered plan. A plan loses its grandfathered status if it changes in one of the following ways:
(a) increased copayment of more than $5 or above medical inflation plus 15 percentage points;
(b) increased deductible above medical inflation plus 15 percentage points; increased out-of-pocket limit above medical inflation plus 15 percentage points;
(c) an increase in coinsurance rates;
(d) a decrease in the annual limit or adoption of a new annual limit after March 23, 2010;
(e) a decrease of more than 5 percentage point below the existing employer contribution rate as of March 23, 2010; or
(f) the elimination of all or substantially all covered benefits to diagnose or treat a particular condition after March 23, 2010.
Any new plan is NOT a grandfathered plan, so if your employer switches to a different insurance company, or if you buy a new individual policy after March 23, 2010, that plan is NOT grandfathered.
As I go through each of the changes that takes effect on September 23, 2010 or the beginning of the next plan year after that date, I will indicate which ones apply to grandfathered plans and which do not.
All of these provisions take effect on September 23, 2010 or the start of the next plan year after that date. This takes effect in every state, regardless of your insurance company, unless you are in a high risk pool. These rules apply only to plans sponsored by an employer or issued by an insurance company, not to high risk pools.
If you have questions, as always, I'm here at the ready. Call me at 860-674-1370 or email me firstname.lastname@example.org
So if we can just fight off the repealers and let this play out, we're going to be a lot better off. Hang in. Jennifer