Sunday, May 30, 2010
VIA E-RULEMAKING PORTAL
Department of Health and Human Services
Centers for Medicare & Medicaid Services
Department of Health and Human Services
P.O. Box 8014
Baltimore, MD 21244-8014
RE: Health Care Reform Insurance Web Portal Requirements
Thank you for this opportunity to comment on draft regulations governing the establishment of an internet website (hereinafter Web portal) through which individuals and small businesses can obtain information about the insurance coverage options that are available to them in their State.
Advocacy for Patients with Chronic Illness is a 510(c)(3) tax exempt organization that provides free information, advice and advocacy services to patients with chronic illnesses nationwide. We serve approximately 1500 patients per year nationwide, and reach many more through publications and public speaking. At least half of our clients contact us with health insurance-related matters, i.e., they do not have coverage and have a preexisting condition that precludes them from getting coverage, or they have insurance but their insurer has denied coverage of a treatment that their physician believes is medically necessary and appropriate. We are called upon to advise patients and caregivers about health insurance alternatives all around the United States on a daily basis.
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.
The Patient Protection and Affordable Care Act (PPACA), Pub. L. 111-148, section 1103(a) as amended by section 10102(b), requires the establishment of a Web portal through which individuals can obtain information about the health insurance options that are available to them in their State. At a minimum, the Web portal is to provide information on: (1) health insurance options offered by health insurance issuers; (2) Medicaid coverage; (3) CHIP coverage; (4) State high risk pools; (5) high risk pools created pursuant to section 1101 of the PPACA; and (6) small group plans offered to small employers. The Congressional purpose will be well-served by a Web portal that provides a sufficient amount of information about each of these types of plans so as to allow consumers to make informed, intelligent choices.
1. Health insurance options offered by health insurance issuers
We understand that a truly thorough version of the Web portal cannot be made available until October 1, 2010. We also understand that the October version will include benefit and pricing information, critical to permitting consumers to evaluate their options. You state that insurance issuers will be required to submit information “on at least all portal plans that are open for enrollment and that represent 1 percent or more of the issuer’s total enrollment for the respective individual or small group market within that zip code.” Thus, it is and should be clear that each issuer will have to provide information on every plan offered in a zip code, and not just one of their plans, even if that one plan is their largest plan or the plan in which they prefer to add enrollees.
The benefits that must be disclosed should be detailed in the regulations. First, if medical underwriting is allowed, and the regulations allow issuers to provide information relative to standard risks, issuers should be required to note that medical underwriting will be undertaken so that consumers are not misled by standard rates. In addition, issuers should be required to state expressly whether coverage will be extended to consumers with pre-existing conditions. The phrase “pre-existing condition” should be defined clearly, so that if an insurer will exclude persons who had symptoms that would cause a reasonably prudent person to seek medical attention even though the person had not yet sought such attention or obtained a diagnosis, consumers will be aware of the way in which their preexisting medical conditions will be treated for purposes of both eligibility and rating.
In addition, insurance issuers should be required to state expressly whether the plan will cover out-of-network providers, and the extent of such coverage, if any. If there is a different deductible, copay or coinsurance, and out-of-pocket maximum for out-of-network providers, all of that information should be provided with specificity.
Also with respect to the statement of benefits, issuers should be required to provide some means by which consumers can determine whether prescription drugs that they take on a regular basis will be covered under a particular plan’s preferred drug list or formulary. This can be accomplished by a link to the plan’s formulary, the publication of the formulary itself, a search mechanism for names of prescription drugs that would search an issuer’s formulary, or any other means that permits a consumer to determine, before purchasing insurance, and in the process of comparing insurance options, whether the prescription drugs they take regularly are covered under the plan.
Indeed, we would take this a step further. In our experience, consumers often are misled by formulary listings because they do not state the use for which the prescription drug is approved. For example, a formulary might include the drug Stelara; however, the plan might only cover Stelara for psoriasis, and not for Crohn’s disease. A formulary might include the drug Marinol; however, the plan might only cover Marinol for nausea and vomiting secondary to chemotherapy but not nausea and vomiting secondary to gastroparesis. These two examples are not hypothetical; they are two examples that arose on the very day on which we are writing these comments. A formulary that does not explain limitations on the use of a prescription drug is not useful to consumers.
Next, we query why the regulations seek voluntary data submission by States rather than mandatory data submission regarding insurance issuers. The submission of data by States would provide a means to ensure the accuracy of the data submitted by insurance issuers. We would suggest that the States be required to either provide the data in their possession, or verify the data being provided by insurance issuers.
Finally, we strongly support the inclusion of “interactive functionality that accounts for geographic and personal demographic information such as State and zip code of residence, sex, family composition, smoking status, and other health indicators” to the extent that the insurance issuers would take such health indicators into consideration in underwriting and rating a plan. We suggest that those plans that are tailored to the more specific information provided by the consumer be listed first, allowing consumers to see the universe of options available. Consumers could then choose a second round of edits based on range of premium, deductibles, out-of-pocket maximums, and so on.
2. High risk pools
First, it will be critical for consumers to be able to find out as soon as possible what plan is operating under section 1101 of the PPACA, i.e., whether this will be the State’s high risk pool or a federal plan. This information must be available by July 1, 2010; currently, consumers are left unaware of where to even look to find their section 1101 high risk pool.
Second, all high risk pools should be required to explain clearly their eligibility criteria. If either type of high risk pool has a waiting period during which a person must have been uninsured, that should be clear, as should any exceptions to that rule. Similarly, if there is a pre-existing condition exclusion or waiting period, that information should be readily available.
Third, many traditional high risk pools have different eligibility rules for people who are so-called HIPAA eligible, i.e., they have had insurance for 18 continuous months, the last day of which was in an employer-based group plan, they have exhausted any COBRA eligibility, and they have not had a break in coverage of more than 63 days. If a high risk pool has different eligibility rules for different groups of people, that information should be provided on the Web portal.
3. Medicaid and CHIP
Currently, it is difficult to find basic eligibility criteria for each individual State’s programs and we, as consumer advocates, have no consolidated, comprehensive source of this information. It often is difficult to counsel consumers around the country regarding Medicaid and CHIP eligibility. The inclusion of this information on the Web portal will be an invaluable tool for consumers.
In particular, it will be extremely helpful for consumers to have ready access to information regarding whether childless adults are covered under Medicaid, for example. In addition, although most States that do not provide coverage for childless adults currently state that they do provide Medicaid eligibility for adults who are disabled, most of them do not explain that the only “disability” that suffices is a finding of disability by the Social Security Administration. Thus, there are many adults who apply for Medicaid and challenge denials of eligibility because they believe they are disabled, even though their application for Supplemental Security Income is pending with the Social Security Administration. The Web portal should state expressly the requirement of a finding of disability by the Social Security Administration to avoid unnecessary applications and appeals as consumers believe they qualify for Medicaid when, in fact, they clearly do not.
Finally, we urge you to at least request, if not require, that a link to the Web portal be posted on websites of the State Insurance Department, the State Medicaid and CHIP agency, and State high risk pool websites. In addition, it would be helpful if the National Association of Health Underwriters and the National Association of Insurance Commissioners posted a link to the Web portal, as well.
The Web portal will be an essential tool for consumers who have to navigate the maze of insurance options and make informed decisions. We hope that our experience working with consumers has enabled us to provide you with some useful ideas about how to make the Web portal even more useful.
Thank you for this opportunity to comment on this important provision of PPACA.
Jennifer C. Jaff, Esq.
Advocacy for Patients with Chronic Illness
18 Timberline Drive
Farmington, CT 06032
8330 West 3rd Street
Los Angeles, CA 90048
Friday, May 28, 2010
The Senate passed $33.5 Billion to go to send more troops to Afghanistan, while the House cut the COBRA subsidy out of the jobs bill entirely, along with the aid to states for Medicaid funding. Many states were counting on that money to balance their budget, so the failure of Congress to appropriate those funds will force states to further cut budgets -- another move that can't possibly help the unemployed and uninsured.
Do we really need another 30,000 troops in Afghanistan? 'Cause I know for sure we do need the COBRA subsidy until people find jobs and get back on their feet.
Call your member of Congress. Contact information for the House is here and for the Senate is here. Remember, they'll be home in their districts for the Memorial Day recess, so if you happen to bump into one of them, let them know that the COBRA subsidy and aid to states are critical -- more critical than sending more troops into a war that nobody thinks we are winning. Jennifer.
Thursday, May 27, 2010
If you have a pre-existing condition, the key will be exhausting your COBRA -- coming up with that additional 3 months of premium -- so you will be what's called HIPAA eligible. That means that there must be at least one "guaranteed issue" option for you. In states with high risk pools, that's typically the guaranteed issue option. In other states, you will have two options, and they may be fairly broad. To research the options available in your states, I like the National Association of Health Underwriters website -- just choose your state and look for the information for HIPAA eligibles. If you find that site difficult to navigate, try Georgetown University's Health Policy Institute's great website, which has more detailed analysis. If you can't figure it out, you can always email me at firstname.lastname@example.org and I'll research it for you -- just remember to tell me what state you live in so I can research for you.
This is a tough one, folks. Pay attention; don't lose coverage of your pre-existing condition. It's very hard to get it back. Jennifer
So much for lawsuits brought by states claiming that the Medicaid expansion will break their banks. Jennifer
The NY Times explains the trend here. I personally hate it. Jennife
Wednesday, May 26, 2010
I strongly urge you to read the entire article here. It's a fascinating take on how Washington works (and doesn't). And it reminds you of how great a victory health reform truly was and will be if we implement it consistent with Congressional intent, as we should. Jennifer
Back at the White House, Obama watched the results with staff, exchanging hugs and high fives when it was all over. In a press conference just before midnight, he announced, “This is what change looks like.”
To plenty of Americans, that was precisely the problem. The process of passing the law seemed ugly—there was plenty of “business as usual”—and the final product has flaws, too. The new law will not cover everybody, and, in the near future, neither the government nor the country will be spending less money on medical care. But it will mean insurance coverage for an additional 32 million people, as well as more reliable coverage for people who already have it. The extra spending it will require is a rounding error, and, within a few years, health care costs will be rising more slowly than they would have otherwise. History shows that, over time, we tend to make these laws better—by amending them with new legislation and strengthening them with regulation, something the Obama administration has already begun. As Senator Tom Harkin memorably put it in December, health care reform isn’t a mansion. It’s a starter home, with a solid foundation, a strong roof, and room for expansion.
Now would be a good time to CALL YOUR MEMBERS OF CONGRESS. The contact info for the House of Representatives is here. The contact info for the Senate is here. Jennifer
Tuesday, May 25, 2010
And so it is unusual that I have nothing to put into words. I could tell you how much pain I'm in -- my thighs are still sore from Friday night, and my abdomen has sharp, shooting pains that make me never want to eat again as long as I live. I could easily rant about all the f*ck ups I know -- people who forget conference calls, who can't plan, who just seem to get a pass no matter what and who they blow off. I could tell you how tired I am, but I think I've probably already done that.
After a therapy session, I try to hold onto key words. This week's key-est words were something about being human -- no, something about how nuts I am for acting as if I am super-human, as if I can do what nobody else can do -- go days without food, with water only, engage in physical activity, and act as if there will be no consequences. Nuts. I. Am. This sick body can't even do what healthy people can do, not to mention a body that's depleted before I even step out my door. And this surprises me? I mean, really. Really?
I loved spending time with Mike. I got to tell him more about the day-to-day activities of Advocacy for Patients so he would know where the fruits of his fundraising labors are going. And I love spending time with Ashley. Shopping with her reminds me of days when I was in my early teens and I used to go shopping with my mother and she would just take this... and this... and this... -- things flying off the racks into bags and bags full of clothes we'd take home that she'd then give away to Margy's mom or the housekeeper or whomever. Ashley's far saner than my mother ever was, though, for sure.
Listening to Pearl Jam Radio as I write this. The acoustic/string version of Lukin -- dubbed Lukin II -- so gorgeous, beyond my imagination.
The whole way my life has become interconnected with Pearl Jam is really funny if you think about the fact that I'm going to be 53 in 3 weeks. When Pearl Jam released Ten in 1991, I was 34 years old . . . finishing my clerkship and transitioning to Connecticut and the practice of law. I was a classic rock fan, for sure -- for me, it's always been either my James Taylor mood or my Bruce Springsteen mood. Toss in the Beatles, the Who, Stones, Led Zep on the rock side; Carole King, Simon & Garf on the folk side. I never listened to Pearl Jam, never gave them a chance, just like I rarely listen to new artists today. Who has time? And money?
And now, without Pearl Jam, there is no Advocacy for Patients, and without Advocacy for Patients, I have no clue what I would be doing with my life. And the music has become as much a part of it all as Mike and Ashley. And then there's Wishlist, the fan-based nonprofit -- I'm not supposed to single out Laura and Eric, but they make everything happen, with the able help of some new faces for me this time out -- mostly Lisa and a handful of others. And then there's Facebook. I'm "friends" with pretty much everybody on Facebook who's into Pearl Jam. I bet I'm the oldest one.
It's a good thing I genuinely like rock and roll. I genuinely LOVE Pearl Jam.
But yeah, today's message is that thinking I was super-human and could abuse my body like that, thinking that I'd be fine without food for a couple of days as long as I drank enough water -- Nuts. I. Am. Really.
And there's the alarm on my Blackberry. Time to tuck away all of this -- all the things that matter to me right now -- and adopt the agenda of the Advocacy for Patients board. That's all the time I have to spend on stream-of-consciousness introspection. Time to wake up. *POOF* Jennifer the lawyer returns. Jennifer
Monday, May 24, 2010
It was nuts; here I am, an almost 53 year old woman, sick and fat, running a tiny nonprofit that does as well as it can do on a shoestring, up on stage with Pearl Jam.
This past Friday night was the last night of their tour, and it was Madison Square Garden. Mike once said something to me about playing the Garden like it was special for him, so I thought I would go. I remember going to concerts at the Garden. The most memorable was my first Springsteen concert, which I could never forget.
Anyway, I hooked up with Mike's wife and her friends and family on Friday afternoon, walked around with them, then went back to their hotel while they got ready, and then we took a van to the Garden. We drove up to the rear entrance -- the loading dock -- and the gates parted for us because we were very special (!!!). One of the security guards told us we'd just missed Matt Damon. There we were, in the bowels of MSG, where the rock stars come and go -- I was there.
We hung backstage until it was time for us to take our seats. And oh, what seats -- they were pretty much the first seats off the floor closest to Mike's side of the stage (and if you're a Pearl Jam fan, you know there's a Mike's side and a Stone's side). The set list was incredible. I kept thinking they had to be getting near then end, but there was another ... and another -- they just kept playing. At some point, I felt so exhausted from standing and clapping and singing and whooping it up that I couldn't figure out where they were getting the energy from. It was truly something.
Then came the first encore set -- three songs by Ed and a string quartet that were remarkable -- and then all of them were back for another few songs. And then a second encore set. Ed gave a shout out to my friend Eric Long, whose 100th show was Friday night. He was every bit as thrilled and stunned as I was last week-end. I was exhausted but overjoyed and loving every minute of it.
Then we went backstage again. Matt Damon. John McEnroe. I chatted with Michael Moore about health care. Then we went to the family room to wait for Mike and Ashley. I was sitting there talking, minding my own business, and the muscles on the inside of my thighs cramped up as if into a fist. I couldn't sit. I couldn't stand. I needed to walk it off but I couldn't move. Ashley's dad brought me a banana. Ashley's step-mom brought orange juice. Patrick said he'd carry me on his back if he had to, which is a joke because I probably weigh twice what he does. I was in agony. But slowly, with the banana and the OJ, it loosened up and I made it to the van. Then Ashley came and got me and put me into an SUV with her and Mike and their security and they took me to my hotel -- Ashley refused to put me in a taxi "Jennifer, you don't take good enough care of yourself so I'm going to take care of you instead," she said. I made it back to my hotel, drank some more OJ, walked and walked and walked it off until the cramps were loose enough so I could take a risk of lying down. I slept a couple of hours, got up, showered and dressed, and high-tailed it home.
I wanted to party. I really wanted to go out after the show. I wanted to hang with Patrick, who's all the way from LA. I had a ridiculous room -- a super suite because I got upgraded -- and I wanted to invite everyone back there for a party. I wanted the night to go on. I wanted my body to hold out just a little longer. No food. Lots of water. I thought I'd be okay. But I wasn't and it totally sucks.
I had a great two nights with Pearl Jam. Mike and Ashley are like angels in my life that make good things happen. I have no complaints.
Except that my body messes with me just when I'm really having fun. And that just totally sucks. If you have a chronic illness, you know what I mean. For one second, I thought I was going to get away with being normal. For one day and night, I thought I could just tough it out. But my body said no. And my body get the last word.
My f-ing body. I hate it. Jennifer
Medicare beneficiaries will soon receive information in the mail about the immediate benefits they may see from the new the Affordable Care Act. The first benefit that several million Medicare beneficiaries will receive is a one-time check for $250, if they enter the Part D donut hole and are not eligible for Medicare Extra Help. The donut hole, or coverage gap, is the period in the prescription drug benefit in which a beneficiary pays 100 percent of the cost of their drugs until they hit the catastrophic coverage. Next year, all beneficiaries who enter the gap will get a 50 percent discount for covered brand name Part D drugs. Also beginning next year, Medicare beneficiaries will get preventive care services like colorectal cancer screening and mammograms without cost-sharing, in addition to an annual wellness visit. A fact sheet about Medicare and the new health care law is available in English and Spanish. This information has recently been updated, and can be read by visiting this link: http://www.disability.gov/health/health_insurance/medicare
Friday, May 21, 2010
According to Kaiser Health News, the expectation is that the COBRA subsidy will be extended through the end of the year. Obviously, that would be welcome relief to the involuntarily unemployed -- especially those with pre-existing conditions who can't find other insurance.
Congress also will consider extending unemployment benefits through the end of the year. The COBRA subsidy and unemployment benefits have been treated in tandem all year. I suspect that, if one is extended, the other will be, as well.
Stay tuned; I'll let you know when Congress acts on this. Jennifer
On Tuesday, the NY Times published an article about my former boss, Richard Blumenthal, who is the Connecticut Attorney General, and who is running for Chris Dodd's Senate seat. Mr. Blumenthal is someone for whom I have the utmost respect. However, it appears that, on what may be anywhere from two to a handful of occasions, he said he was "in" Vietnam rather than saying -- as he did most often -- that he was in the Marine Reserves "during" Vietnam. I don't believe for one second that he intentionally lied. How many times have you said "we" when talking about the United States's missions in Iraq, Vietnam, or around the world? Did you mean to be implying that you were actually doing the fighting? Of course not. And as best I can tell from the couple of quotations that have been found, he said things like "when we returned from Vietnam" -- which easily could have meant when the United States returned from Vietnam.
Still, people are upset and offended and calling for him to resign or drop out of the race. This has been very upsetting to me. I could list Mr. Blumenthal's character flaws as I know them, but lying is not one of them, not ever. He said he unintentionally misspoke and I believe him.
The NY Times published this story, though, followed by a really mean-spirited editorial suggesting that this was a "disqualifying character trait, without any regard for the good Mr. Blumenthal has done for Connecticut, taking on big tobacco, health insurers, Microsoft, and thousands of issues on behalf of constituents.
And what makes this all really offensive is that the NY Times got its information from Mr. Blumenthal's Republican opposition. Linda McMahon of World Wrestling fame has admitted she fed the story to the Times. In addition, although the Times posted a snippet of video with the "in" Vietnam line, in the very same speech, Mr. Blumenthal said that he served in the Marine Reserves "during" Vietnam. The Times still has not acknowledged that fact.
But because it's the NY Times, people believe it and they are outraged. Chris Matthews went ballistic on Hardball about this -- also without having researched the matter. Because I know Mr. Blumenthal well, and I think I am pretty objective about his strengths and weaknesses, I have been so disappointed in the NY Times and other media for the way it has handled this matter. You take a story from a political opponent without researching it? You eviscerate a man's entire career even when, if taken in context, his supposedly offensive statement was no big deal? Indeed, I wrote a letter to the editor of the Times which they buried -- mine was the only positive letter they published, and it was nearly impossible to find because they commingled it with a bunch of letters on a tangentially related article.
So I've been upset for Mr. Blumenthal, and very disappointed in the Times.
Now, I'll take you back about a week ago. We have been featured in NY Times stories about health insurance three times. The first time, we paid $1200 for the right to post the story on our website. The two more recent times, we didn't. When the NY Times reprint police (a company called PARS) saw it and told us to either take it down or pay up, I told our webmaster to take it down. He did -- as far as I could tell. On the website itself, there were no links to the PDFs of the articles. However, apparently, he left the PDFs on the server, so when PARS used the old links NOT through the website, but just the links that it had from a week ago, the PDFs came up. I am technologically totally dumb and had no clue that the articles were still anywhere that could be found.
Yesterday, amidst my disappointment in the Times over the Blumenthal mess, I got a threatening letter from the Times telling me to take the articles down or they would sue me. My response was that the articles were already down. The Times insisted I was wrong, so I checked with my webmaster, and he discovered his mistake in leaving the articles on the server. He took the articles down. That should have been the end of the story.
However, the lawyers for the Times were brutal. In email after email -- they accused me of "stealing," of being "ignorant." They combed through this blog for every item from the Times. Although content is republished on a zillion blogs these days, and although my sole purpose in posting content about things like the new health reform law was educational, technically, the Times was right -- but they did what they did with a mean-spiritedness, as if they had caught a burglar red handed. I took everything in this blog down and replaced it with a link. I didn't do it only for NY Times content -- I went through the whole blog and did my best for all content that was not original. (And by the way, posting links is permitted, according to the Times and everyone else I've spoken with.) But that wasn't good enough for the Times. They needed their pound of flesh. They needed to berate me in writing.
So I feel very disillusioned by the Times -- they did their best to ruin the career of someone for whom I have such respect on very shaky grounds, and then they came after me with a vengeance to the extent that you'd think I had stolen the queen's jewels or something. Indeed, I never posted any content without saying where it came from. And quoting sources like the Times is entirely legitimate -- if I wrote something here and included a quotation from the Times, attributed to the Times, they could not say boo about it. And really, I'm running a tiny nonprofit and can't possibly hurt the NY Times in any way. Their vitriol, the way they addressed me, was totally uncalled for and offensive -- as offensive as quoting one remark by Mr. Blumenthal, but not another, clarifying remark made in the same speech. This is the NY Times. They are supposed to be better than that.
So between feeling upset for Mr. Blumenthal and powerless to help, and feeling insulted and demeaned by the Times over things I voluntarily corrected, I felt flattened like a pancake.
But not as flattened as another person whom I have come to care about, Susan Bysiewicz. Susan is our Secretary of the State. She was running for Governor until Mr. Blumenthal announced that he was running for Senator Dodd's seat, when she shifted her aspiration to the Attorney General's Office. Almost immediately, her qualifications were challenged. To be Attorney General in Connecticut, you have to have engaged in the "active practice of law" for 10 years. She did so for at least 6 years. The question became whether her service as Secretary of the State -- including interpreting the election laws -- counted as "active practice of law." She went through a nasty court battle and won, only to have that decision reversed by a unanimous state Supreme Court this week. And now Susan will not be on the ballot this November. While this helps the chances of another person I admire, George Jepsen, who now will have a clear path to the Democratic nomination for Attorney General, I feel very badly for Susan. I can't imagine how awful this must be for her.
This is the kind of week it's been -- the highest high, the lowest low. Lessons learned? Surely, I will never post content from any publication ever again -- you will only see links from here on out. But I also never will spend hours helping NY Times reporters to find patients to interview for their stories, or learning the ins and outs of health insurance -- the three stories in which I was quoted came from my knowledge and experience, and I will not give that away to a publication that does not appreciate it ever again. Even if they are the NY Times.
And stay out of politics -- that's for sure! I hope Mr. Blumenthal is able to weather this storm, and I hope Susan Bysiewicz finds her way back to public service, as I believe she will. If ever I needed to be reminded of why I hate politics, this week has surely done that for me.
And never stop thinking critically and questioning, even the NY Times. They are wrong about Mr. Blumenthal and they refuse to admit it. They were far more aggressive towards me than they needed to be since I voluntarily corrected every alleged transgression. I will never read the NY Times the same way again. If they could be so unfair to Mr. Blumenthal, and right but brutal towards me, then how can I ever rely on them for information? Indeed, how can any of us rely on any media without independent thought and consideration?
Indeed, most of all, I -- we all -- need to be smarter. I should have known better than to post content on this blog. However laudable my goal was of providing you with as much information as quickly as I could, even when I didn't have time to write it all up in my own words, I was wrong. So was Mr. Blumenthal. And truth be told, so was Susan Bysiewicz, who really didn't practice law for 10 years. And so was the NY Times.
A week of many burst bubbles.
But here's the great thing about life: It goes on. And tonight I will be with Pearl Jam again, this time at Madison Square Garden. And Mr. Blumenthal will receive the Democratic nomination for the US Senate at this week-end's convention. And Susan Byseiwicz will run for Joe Lieberman's Senate seat in two years. And the NY Times will keep doing what it does, even when it's wrong, with impunity because it is the NY Times. And after enough time passes -- a year, two years, five years -- I'll probably talk to a NY Times reporter again, too. Life goes on, every day a chance at redemption and a clean slate.
Onward and upward. Jennifer
Thursday, May 20, 2010
Tuesday, May 18, 2010
Patient groups from the United States, Canada, Australia, 23 European nations, and Brazil are working to draw awareness to IBD. IBD, which stands for inflammatory bowel diseases, is comprised of Crohn’s disease and ulcerative colitis — two serious, chronic digestive diseases that affect five million people worldwide (1.4 million in the U.S. alone). Crohn’s disease and ulcerative colitis directly affect the digestive system and cause intestinal tissue to become inflamed, form sores, and bleed easily. There is no cure, no known cause, and little public understanding of the pain and chronic suffering with which IBD patients courageously cope every day of their lives.
See World IBD Day website.
Yours truly has suffered from IBD for more than 35 years. It's no fun. Fifteen prescription medications every day just to keep myself going. Not being able to eat when I'm out of the house or away from a bathroom. Being low on energy, being in pain 24/7 -- it's not an easy way to live.
So on May 19, 2010, think of me and the FIVE MILLION IBD SUFFERERS WORLDWIDE. Join us in hoping for a cure in our lifetimes. Jennifer
Monday, May 17, 2010
They're going to hear lots from insurers and other industry types about why these regulations should be narrowed, so if you have something to say, now's the time. Jennifer.
Mike: Hey guys. I’d like to dedicate this next song to this woman Jennifer Jaff right over there who runs a cool thing called Advocacy for Patients and she gets insurance for kids who can’t get it and she helps any kind of people who have any chronic illnesses and she kicks ass. Jennifer Jaff’s her name and my wife and I support her mostly. Advocacy for Patients. She’s one of your own. Use her if you need to. She’s fantastic. Thank you.
Ed: She’s good at fixing things.
And they launch into The Fixer.
Friday, May 14, 2010
Well, it seems like we were prescient. The Washington Post reports that they're already gaming the system. Read the full article here. Jennifer
Thursday, May 13, 2010
Posted by NEJM • January 13th, 2010 •
Jack M. Balkin, J.D., Ph.D.
Once President Barack Obama and Democrats in Congress have passed a health care reform bill, conservative groups are likely to challenge parts of it as unconstitutional, arguing that it oversteps Congress’s powers. A key target will be the individual mandate, which is designed to coax uninsured persons into purchasing insurance.
The term “individual mandate” is misleading for two reasons. First, the law would not actually require all individuals to purchase insurance. The mandate would not apply to dependents, persons receiving Medicare or Medicaid, military families, persons living overseas, persons with religious objections, or persons who already get health insurance from their employers under a qualified plan.
Second, it is not actually a mandate. It is a tax, which people would not have to pay if they purchased health insurance. The House bill imposes a tax of 2.5% on adjusted gross income if a taxpayer is not part of a qualified health insurance program. The Senate bill imposes what is called an “excise tax” — a tax on transactions or events — or a “penalty tax” — a tax for failing to do something (e.g., filing your tax return promptly). The tax is levied for each month that an individual fails to pay premiums into a qualified health plan.
Congress has the power to pass legislation that falls within any of its powers enumerated in the Constitution. There are two obvious sources of congressional power. The first, described in the General Welfare Clause, is the power “to lay and collect taxes, duties, imposts and excises, to pay the debts and provide for the common defence and general welfare of the United States.” The second, laid out in the Commerce Clause, is the power “to regulate commerce . . . among the several states.”
The individual mandate is a tax. Does it serve the general welfare? The constitutional test is whether Congress could reasonably conclude that its taxing and spending programs promote the general welfare of the country.1 This test is easily satisfied. The new health care reform bill insures more people and prevents them from being denied insurance coverage because of preexisting conditions. Successful reform requires that uninsured persons — most of whom are younger and healthier than average — join the national risk pool; this will help to lower the costs of health insurance premiums nationally.
Taxing uninsured people helps to pay for the costs of the new regulations. The tax gives uninsured people a choice. If they stay out of the risk pool, they effectively raise other people’s insurance costs, and Congress taxes them to recoup some of the costs. If they join the risk pool, they do not have to pay the tax. A good analogy would be a tax on polluters who fail to install pollution-control equipment: they can pay the tax or install the equipment.
Because the textual argument for Congress’s authority under the General Welfare Clause is obvious and powerful, opponents have tried to argue that the tax is unconstitutional because it is a “direct” tax. Under the Constitution, “direct” taxes must be apportioned to state population. That is, if State A has twice as many people as State B, the amount of revenue collected from State A must be twice that collected from State B. Like most federal taxes, the individual mandate is not apportioned to state population.
The classic examples of direct taxes are taxes on real estate and capitation or “head” taxes on the general population, under which people are taxed no matter what they do. In one of the Supreme Court’s first cases, Hylton v. United States, Justice William Paterson held that if there is any doubt, taxes should be classified as indirect rather than direct.2
The individual mandate is not a direct tax. The House’s version is a tax on income. Under the Sixteenth Amendment, income taxes do not have to be apportioned, regardless of the source of the income. The Senate’s version is an excise or penalty tax. It is neither a tax on real estate nor a general tax on individuals. It is a tax on events: individuals who are not exempted are taxed for each month they do not pay premiums to a qualified plan.
If the individual mandate falls within
Full text is here. Jennifer
Wednesday, May 12, 2010
The Obama administration late Tuesday filed a response to one of the first lawsuits against the new health overhaul, "saying it was constitutional and any challenge was premature," Reuters reports.
The argument by the Justice Department was in response to a lawsuit filed by the conservative Thomas More Law Center in Michigan on March 23 – the day Obama signed the new law. The group argued a "provision requiring most Americans to buy health insurance under threat of financial penalty was beyond the scope of Congress' power and was an unconstitutional tax. … The group also said it violated their constitutional rights because federal tax dollars would be used to fund abortions" (Pelofsky, 5/12).
Associated Press: "In response, the Justice Department says the Constitution grants Congress the authority to regulate commerce and that this broad grant of power is not limited to the direct regulation of interstate commerce. … Congress also may regulate activities that substantially affect interstate commerce and 'a court may not second-guess the factual record upon which Congress relied' in writing the legislation, the Obama administration argued" (Yost, 5/12).
Main Justice: "Justice Department lawyers argue that the Thomas More Law Center in Michigan has no standing to challenge the law because the provision at issue — the individual mandate — does not take effect until 2014." Thirty-three states also are trying to block the individual mandate on American citizens to purchase health insurance (Reilly, 5/12).
Tuesday, May 11, 2010
Monday, May 10, 2010
Friday, May 7, 2010
Examples. There's a relatively new drug called Avastin. It's used to treat certain kinds of cancer, but it's not chemotherapy, so it doesn't have all the awful side-effects. It's FDA approved for colon cancer, non-small cell lung cancer, glioblastoma, breast cancer, and kidney cancer. I have one case involving non-small cell lung cancer in which the insurer won't pay for the Avastin because it wasn't given in conjunction with one of the more powerful, destructive chemotherapy drugs, as the FDA labeling suggests. I have several other cases involving other kinds of cancer -- prostate cancer, for example.
The whole issue of how FDA labeling should be treated by payers and doctors is actually pretty clear if you listen to the FDA. In 1982, the FDA issued a policy guidance that said that doctors should not feel restricted by FDA labeling, that sometimes a drug's manufacturer won't want to spend the money to do the massively expensive studies to expand a drug's labeled uses, but that doctors will find the drug to be incredibly useful for those labeled uses. The FDA's policy guidance encouraged this sort of responsible, conservative experience-based use of drugs.
However, most of the time, when an insurance company denies coverage of a drug or device because it is "experimental or investigational," it's also really expensive, like Avastin. I've had doctors at insurance companies tell me that they feel a responsibility to make sure patients aren't treated irresponsibly by their doctors. Bullsh*t. I don't buy for one second that the reason an insurance company denies coverage of a cancer drug that's being given to someone whose doctor has already tried everything else, and who says they will die without this treatment, is because they care about the patient. It has to be about money.
But what would Peter Orszag do? Not more care; just better care. So if Avastin is better but more expensive, we should cover it? Who gets to decide what's better? Because as long as it's not the treating physician, it's someone with a financial incentive, and that will lead to decisions that are motivated by the wrong thing. After all, we're not going to have so-called "death panels" who decide who gets treated and who doesn't, right?
Peter Orszag, however, says it can't just be the treating physician because that doctor has a financial incentive too: The more he treats, the more he get paid, right? So who, other than the patient, doesn't have a financial incentive, but has enough expertise to make an informed, fair decision?
The answer already exists in 45 states (except MS, ND, SD, ID, WY) for fully-funded plans (i.e., not for self-funded plans, in which large employers pay an insurance company to administer the plan, but the employer actually pays for the health care itself): External appeals. There are independent review organizations staffed by doctors paid (usually) by the state out of a fund that's made up of a fee collected from insurance companies who do thorough reviews of medical records and the medical literature and make a decision. They owe no loyalty to anybody; their decisions are truly independent. And their decisions are binding on the insurer (except in Florida, where the insurer can take the matter to court to try to get them over-turned -- bad idea, giving a judge with no medical knowledge the final say). In my experience, they do a great job. I win the cases I should win, and every once in awhile, I also lose a case that I knew from the start was a stretch. The system works.
One of the less talked about pieces of health reform is the expansion of external appeals. Beginning in September 2010 (to be phased in), every insured will have the right to pursue an external appeal, including those in self-funded plans.
If we really want better care vs. more care, and we all agree that the best way to accomplish that is to have experts making critical treatment decisions who do not have any financial stake in the outcome of a dispute, we should be focusing on making sure that these external appeal processes remain as robust and independent as they are today. I've been working in health insurance for about 15 years, and external appeals are the best thing that has happened to consumers in that time. I think they may well be one of the best pieces of health reform, as well. Jennifer
Therapy, when it's productive, is incredibly difficult. It is a process that has change as it's goal. And as I learned from reading Plato, there's a moment in all change when you no longer are what you were before but you're not yet what you are becoming -- a moment in which you are nothing, and it's terrifying. But holding onto the old isn't working for me, and trying to jump ahead of change just makes you back-slide. So I have to slog through the mud of my emotional make-up to make any real progress.
What I've learned is that I'm not taking very good care of myself, and there's a big part of myself that's very angry about it. I'm much better than I used to be; I'm not afraid of feeling abandoned. But I'm not happy. I'm so busy worrying about making everybody else happy that I'm losing track of myself and what matters to me. And that's not okay.
There are enough realistic ways in which I have to worry about other people to have gotten me into this deep hole I'm in. I have funders who have to be kept happy, and some require a fair amount of care and maintenance. I have business relationships -- here, again, I tend to worry more about keeping them happy than they seem to worry about keeping me happy, but we're a small organization, and I feel more vulnerable than they do, I think. And then there are the patients and caregivers who call needing our help. My job is not just to solve their legal problem; it's to make them feel heard, respected, cared for, important. That's part of why I'm really good at what I do; there's nothing clinical about the relationships I have with my clients, even when the relationship is one phone call or one series of emails. I'm committed to making sure they feel they were heard, even if I can't fix things for them.
But then there are other things. For example, there are a couple of business "ventures" that I brought to a partner that we've been working on together. I think they're blowing them and I have felt TOTALLY responsible for it. First, it makes me look bad when we miss every deadline by a month, and when we don't address the other party's concerns. But what was really interesting was that when I talked to my supposed partner's top dog, he said none of this means anything to him because it's not going to bring in any money, and all he cares about now is bringing in money so he can get his cause off the ground. He talked to me like my contribution was meaningless -- while I've been eating my guts inside out trying to keep things on track.
And so it dawned on me (with a little help from my shrink) that letting go of the whole thing -- letting them sink or swim, as they choose -- is the only thing that makes sense. I'm making myself sick worrying over something that doesn't even matter to them! I'm feeling like it's my job to keep things moving when, in fact, it's really not -- I've done my share of the work already, and if they don't care, why do I care so much on their behalf?
Lesson: Letting things go doesn't mean losing control; it means taking control over what matters to me and what doesn't. Letting someone else dictate my agenda and refusing to let things go is losing control, so for a control freak like me, letting go IS AND MUST BE control itself. By giving up control over the uncontrollable, I am taking back control over my life. And if that means that a business "venture" fails, then so be it. It wasn't a business venture for me or for Advocacy for Patients; it was for them, and if they don't care, then why should I?
I pretty well lost it before I figured this out and things clicked in my crazy head. I still feel anxious; I don't like not knowing the status of things, not being in the loop, even if the loop is a failing one. But I don't feel sick with angst over something that, in the end, has little if any meaning. Indeed, stepping back means that, if the whole thing falls apart, it won't be my fault. So there's a real benefit to letting go of a sinking ship when you're the only one bailing water and everyone else is working on their suntan. Just let the ship go and swim ashore, and let the rest of them do the same. In the end, it may even all surprise me and work out. But either way, it wasn't worth what I was putting myself through, who I was being, how I was feeling and sounding and acting.
This is baby steps kind of change. You don't make fundamental changes at age 52.83 easily, without having to reinforce new knowledge, new ways of being and acting over and over. I figured out what to do in one situation. That doesn't mean the next situation will be easy. But hopefully, in time, it will get easier and easier to take care of me. Because in the end, I'm the one to whom I have first and foremost responsibility. Jennifer