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2012 EDITION
Know Your Rights Handbook | 
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Want to be your own advocate? Learn how by ordering the Know Your Rights Handbook today.
Learn about health and disability insurance, Social Security disability, employment discrimination, family and medical leave, school-based accommodations, resource location, and much more.
Click here for more information or order today on our website or on Amazon.com.
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Look What I Just Found!
Choosing Wisely is an initiative of the ABIM Foundation that is intended to promote discussions between doctors and patients to help patients make more informed care decisions. Nine physician societies are coming together to identify five things patients and doctors should question. Check out the lists. Will this be yet another justification for insurers to deny coverage, or will this help to empower patients to question the care they receive -- and bring down health care costs in the process? We'll have to see how this is used, but it's sure interesting to see the medical profession start to engage in this dialogue aimed at reducing health care costs.
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Living with Chronic Illness: A Prescription for Advocacy | 
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Read the results of our chronic illness survey, available FREE here.
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What I'm Reading
A good friend of mine got me an autographed copy of Fighting for our Health by Richard Kirsch. It tells the story of the struggle to get health reform enacted into law. As we await the Supreme Court's decision in the health reform case, this is a chance to look back on the grass roots campaign led by Health Care for America Now (HCAN). It reminds us of what we were fighting for -- and how hard we had to fight for something less than what we really wanted, but at least a road forward. There are those, even among Democrats who voted for the law, who fear that making it a first-term priority may have doomed President Obama's chances for a second term. But when you go back to the fight on the ground and remember how hard a fight it was -- and how tirelessly millions of Americans worked to get this law passed -- you can't help but be proud of what we accomplished.
I'm holding my breath waiting for the Supreme Court, afraid that the Administration's failure to message this correctly to the American people will cost us the law, not because there's anything wrong with the law, but because people don't understand what the law does. I've yet to have a one-on-one conversation with someone who opposes the individual mandate, for example, whose mind was not changed when I explained that it was the best way to get coverage of people with pre-existing conditions, which the majority of Americans favors. Often, as I sit in my office speaking to patients, I feel alone in this struggle. Fighting for our Health helps to remind me that this law was built with the sweat and sweat equity of millions of Americans in their communities, changing hearts and minds. I'm proud to be a small part of that.
Jennifer
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Get Your Guts In Gear
Ready to ride? The 2012 schedule is up.
New York: June 8-10, 2012 in the beautiful Hudson River Valley
Midwest: September 7-9 in Wisconsin
To learn more about Get Your Guts in Gear, see their website for details or call 866-9IGOTGUTS (866-944-6848).
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Advocacy for Patients on the Move!
We hibernate in the winter if we can, but we're starting to book for the spring, starting with the following:
May 16-20: Mike McCready and Flight to Mars, Los Angeles
Want us to come speak to your group? Now's the time to line it up. Can we do a webinar for your organization? Contact Jennifer and we'll be happy to accommodate your request.! |
It's Too Hard to Be Sick in America
Our book, It's Too Hard to Be Sick In America, is available FREE for your reading pleasure on our website. In it, we tell the stories of some of the patients with whom we've worked in order to show policymakers what chronic illness really looks like. Go have a read -- and the next time you talk to someone who clearly doesn't "get it," give them a copy of It's Too Hard to be Sick in America.
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Advocacy for Patients with Chronic Illness
We provide FREE information, advice and advocacy services to patients with chronic illnesses in areas including health and disability insurance, Social Security disability, employment discrimination, Family & Medical Leave Act, school-based discrimination, and resource location.
Need help?
Call (860) 674-1370
or email us.
Advocacy for Patients Needs Your Help!
To keep providing these services for FREE, we need your help.
WE DO NOT SOLICIT DONATIONS OUTSIDE OF THE FOLLOWING STATES:
CT, MA, WA, MN, CA, IL, NY, TX, VT, MT, ID, WY, NV, SD, NE, IA, IN.
Advocacy for Patients is committed to using its funds to support the work we do on behalf of patients. Accordingly, due to the cost of registering to solicit donations in other states, we do not solicit donations outside of the states listed above. Nevertheless, generous donors from many states make unsolicited donations for which we are very grateful.
THANK YOU!
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Chronic Illness [and] Law
Some months, I deliver substantive legal analysis -- lately, mostly about the Supreme Court's health reform case. We'll be getting back to that soon enough. Other months, I write in a more personal voice, as a patient with a chronic illness, in an effort to help you feel less alone and give you words to use -- comorbidity, Chronic Illness Fatigue -- that help you describe what you are living with.
However, it dawned on me one April night, while trying to sleep despite pain from a corneal abrasion and a dental implant, that although I often speak about chronic illness law separately from how I feel as a patient with a chronic illness, the truth is that the two are inextricably entwined in me. Had I not gotten extremely ill in 2002, I still would be engaged in complex litigation, trial law on a national level. Instead, when I was the sickest I've ever been in my 36 year odyssey as a Crohn's patient, I started Advocacy for Patients with Chronic Illness in an effort to invent a job for myself that I could do from home. It wasn't a well-conceived idea; it just sort of happened, as I started answering questions from other patients and taking on an insurance appeal here and there. As I became involved in the work, I realized I needed to figure out how to earn a living without charging fellow patients in crisis, which I knew I could never do. So I got the tax exemption so I could fundraise, and things sort of developed from there.
But really, when I started Advocacy for Patients, I was relatively clueless. Although I had lived with chronic illness for many years, having been diagnosed at age 19, I had not been side-lined by it in any serious way. I had done some work for consumers in the health insurance arena when I worked at the Connecticut Attorney General's Office. I knew a fair amount about the law on sex discrimination, having taught Women & Law, and the Americans with Disabilities Act is similar to Title VII in the basic analytic framework. But really, I didn't know anything about the legal specialty that I've now sort of invented: Chronic Illness Law. Say that to any other lawyer and they'll tell you there's no such legal specialty. There's disabilities law -- but the disability rights community hasn't proven to be a very good fit for me; they focus more on visible illnesses than invisible ones, and that's a world of difference when it comes to trying to convince a school that a child with chronic migraines needs accommodation, or to convince an employer that the Family & Medical Leave Act applies to someone with fibromyalgia. Where law and societal attitudes intersect, Chronic Illness Law is very different from disabilities law -- the biases and impressions people have are different when the illness is invisible, when bone-deep fatigue is the most overwhelming symptom, when high deductible insurance is as good as no insurance at all, when there's a raging dragon within that chooses its timing and its shape unpredictably, at will, rather than in a more predictable way. These differences require us to be creative about how we apply existing law to the problems of people with chronic illnesses.
I hadn't planned to invent a new legal discipline when I started doing this work. And I certainly never planned to make chronic illness a central focus of my life. Indeed, I spent the first 25 years of my illness doing everything I could to ignore it. I was back to work two weeks after major abdominal surgery. I never thought about asking for extra time on the Bar exam because of how much time I spent in the bathroom during the exam. Even when I was fired from a job only days after having a colonoscopy and (naively) telling a co-worker that my Crohn's was out of remission, my attitude was that I would not allow my illness to define or limit me in any substantial way.
But now, I know -- as sure as I know the sun will rise and set -- that you don't get through life with a chronic illness without fighting battles with insurers, employers, schools -- and friends and family, too. Not only is Chronic Illness Law a specialty unto itself, but it is huge. We at Advocacy for Patients don't even get into medical malpractice or special needs trusts, veteran's benefits or worker's compensation, divorce or child custody issues! Being expert at health insurance, the ADA, the FMLA, school law, and how to find answers and resources to address the broad range of issues you send our way is more than enough to keep us busy. And it is a unique specialty because it requires understanding the nature of Chronicity and finding legal responses to it. This is easier said than done, especially since largely invisible chronic illnesses are so misunderstood. Is there even one of you reading this newsletter who hasn't been told "you don't look sick" or "are you sure you aren't just depressed?" or "you just need to tough it out" at some point in the course of your illness? The common experiences of people with chronic illnesses -- people who ALL live with fatigue that is not alleviated with sleep, pain that does not quit, and a constant attack on one's credibility and sanity -- inform Chronic Illness Law. In other words, Chronic Illness Law is a discipline whose focus is to build the reality of Chronicity into legal solutions.
I did not start out with a very clear view of that seven years ago. What I did know from the start, though, was that it was my intent to organize a movement -- a civil rights movement for recognition of the special needs of people with chronic illnesses. And so, I celebrated when the ADA Amendments Act said an episodic illness that is disabling when active is to be considered a "disability" even when in remission -- the first recognition of chronic illness in American law, as far as I can tell. And while there's a lot to health reform, I have been laser-focused on getting coverage of people with pre-existing conditions; for us, THAT would be equality. I see prescription drug specialty tiers as nothing less than an effort by insurers to divert the cost of chronic illness back to patients, so that our insurance becomes less valuable in dollars and cents than the same insurance is to our co-workers. And I fight it all as a lawyer and a patient, combined.
Feminism tells us that the personal is political. The women's rights movement has shown us all that domestic violence is not just intensely personal; it's also an issue requiring legal response. The failure to earn as much as men not only makes it harder to pay our bills; it's also a legal and political issue. So, too, is chronic illness both personal and political. Chronic Illness Law is all about finding legal responses to the experiences of people with chronic illness -- to Chronicity. It should not surprise me that, in me and in my work, my personal experiences have informed my practice of law.
And so, there is, indeed, a legal discipline called Chronic Illness Law. It's what we at Advocacy for Patients practice. It's informed by our real experience with living with chronic illness. It's informed by your experiences, the experiences of everybody who comes to us for help. You have helped us build it and define it, and you continue to challenge us to make it fit the experiences of people with chronic illnesses better and better. Its goal is to promote and protect your civil rights.
I am privileged to practice Chronic Illness Law. It is the most rewarding work of my life. And if every once in awhile it touches one of you in an enriching way, it is an unqualified success.
Jennifer
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Flight to Mars
Mike McCready, of Pearl Jam, and his wife Ashley O'Connor made a decision ten years ago to go public with Mike's struggle with Crohn's disease. Every year since then, Mike has played a benefit with a band called Flight to Mars -- Gary Westlake, Paul Passereli, Mike Musburger, Ty Bailie and Tim DiJulio -- with all proceeds going to Advocacy for Patients and the Crohn's & Colitis Foundation's Camp Oasis. The fan-based Wishlist Foundation has organized pre-show fundraisers each year, as well. The proceeds of the Flight to Mars shows are essential to our ability to continue to provide free services to patients with chronic illnesses.
This year, in recognition of the 10th anniversary of the Flight to Mars shows, Mike and the band will be playing 7 shows rather than one. If you are anywhere near the West coast, you really should check out one of these shows (or all of them!). I'll be at the Los Angeles show, rockin' out. I hope to see you there!
The schedule is:
May 14 - the Observatory - Santa Ana, CA
May 15 - the Casbah - San Diego, CA
May 16 - Hard Rock Cafe - Las Vegas, NV
May 17 - the Troubator - Los Angeles, CA
May 20 - the Independent - San Francisco, CA
May 22 - Hawthorne Theater - Portland, OR
May 23 - the Showbox - Seattle, WA
The Wishlist Foundation has all kinds of VIP packages that you can buy -- with TWO CHANCES to play LIVE with Mike and the band in LA or Seattle. You can check out the details here, or you can buy or bid for the package you want on eBay here.
Great music, great people, great cause -- what more could you want?!!! Hope to see you in LA! Jennifer
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The Chronicity Project
This is the space in our newsletter where we talk about health care policy affecting the chronically ill.
Here's an update on what's happening in the legislative arenas:
Federal
I suspect it's going to be very slow going on the federal legislative front during the seven months leading up to the election. The House GOP keeps passing measures aimed at undermining health reform, including trying to cut the subsidies that will make insurance affordable for all Americans. They're still pushing a voucher system for Medicare and block grants for Medicaid. They're also trying to undo the debt ceiling deal they made for automatic cuts in 2013 that were the result of the super-committee's failure to come up with a budget plan. It's highly unlikely that any budget will be passed before the election -- it's just too flammable. I suspect there will be a flurry of activity after the Supreme Court renders its health reform decision, but any GOP proposal will be killed in the Senate, and any Dem proposal will be killed in the House. So I don't expect to see much accomplished in the next few months.
Contact your members of Congress and tell them what you think. To find your Representative, go here; to find your Senator, go here.
Connecticut
As the legislative session draws to a close, we wait on the fate of legislation that would add consumers to the Health Insurance Exchange Board and that would create a Basic Health Program to bridge people with too much income to qualify for Medicaid but not enough income to be able to afford premiums, deductibles and copays. The specialty tiers legislation failed in committee -- but we're still talking.
Meanwhile, the Exchange has established four advisory committees. We serve on the Health Plan Design and Qualifications committee and the Consumer Experience and Outreach committee. In May, the Health Plan committee will make a recommendation on our choice of the benchmark plan on which the Essential Health Benefits package will be based. The Essential Health Benefits package will be a floor of what much be covered by commercial insurance in the State, so it's hugely important. The Health Plans committee will pass its recommendation on to the Consumer Outreach committee, which then will make a recommendation to the Exchange Board. We're doing our best to make sure that the voices of Connecticut consumers are heard as critical decisions are made for our State.
Your State
Maine's specialty tiers bill (LD 1691) was passed -- great news! In California, a bill (AB 1800) was introduced that would make it clear that prescription drug copays/coinsurance are included in the out-of-pocket caps set forth in the federal health reform law. Now would be a good time for you Californians to contact your state senator and representative to urge them to pass this legislation. To find your state Assembly member, go here. To find your state Senator, go here. In New York, a bill has been introduced (A.7489-B, Gottfried/S.5068-A, Hannon) that attempts to get at the problems of inadequate reimbursement for out of network benefits. Primarily, it would promote transparency so that consumers would know what portion of the costs they are responsible for, and provide illustrations so that consumers would understand how out of network claims are paid and what the patient's balance is. To find your state Assembly member, go here. To find your state Senator, go here. ATTENTION FLORIDA CROHN'S & COLITIS PATIENTS: Dr. Maria Abreu is trying to obtain $500,000 from the State to open an IBD center at University of Miami. If you agree that this is much needed, please contact Governor Scott and your State legislators and urge them to support this very modest funding request. To find your Representative, go here. To find your state Senator, go here. We all know Florida needs IBD experts, so here's your chance to help make it happen. Something going on in your state? Let us know.
In the meantime, keep up the fight. First, be aware. Read your local newspapers. Find the website for your state legislature. Read. Write your state legislators about things that concern you. One tool we like is the Kaiser Health News, to which you can subscribe for free. But don't just read: ACT. Go to hearings and testify. Tell your story. Put a real face on the healthcare crisis. |
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Jennifer C. Jaff, Esq.  Executive Director
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