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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.
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Look What I Just Found!
Ben's Friends is a platform for rare disease patient communities, places where patients with rare diseases can meet and build communities of common interest and trust. Founded by Ben Munoz, who suffered a life-threatening brain hemorrhage, Ben's Friends is intended to be a safe place where people can learn from each other and get/give support. It focuses on rare diseases, although the definition of "rare" is broad enough to include things like Crohn's disease and fibromyalgia. And if there isn't already a community for your disease and you're willing to serve as a moderator, contact Ben's Friends and they'll create one. You can contact them at info@bensfriends.org.
Don't you just love to see the creative ways patients are helping other patients? I know I do.
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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
It's a big month for books -- I have three for you!
I've just read The Patient's Checklist by Elizabeth Bailey. It builds on Atul Gawande's seminal New Yorker article, in which he proposed the use of a very short checklist for hospitals to use to avoid infections and errors. Well, this Checklist is for patients to make sure you're taking care of everything you need to do whenever you're hospitalized. It contains really great tips for preparing for a non-emergent hospital visit, surviving while you're there -- especially, avoiding medication errors -- and discharge planning. Each phase of the hospital journey is accompanied by a checklist that will help patients survive a hospital stay. Next time you're going for surgery or some other planned hospital stay, take a copy of this book with you and use it. It may even save your life.
I also just read Health Care Reform by Jonathan Gruber, the MIT genius who designed Massachusetts's and federal health reform. Before your eyes glaze over, this is NOT a dense policy piece; it's in comic book format, sort of like a graphic novel, but non-fiction. If you want to explain to people why health reform matters and how it works, this is a great way to do it and a very fast read.
And while you're at it, get yourself a copy of Hope for the Flowers by Trina Paulus. It's a remarkable book that will take you fifteen minutes to read and a lifetime to understand and actually live. Thanks, Laura.
Jennifer
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Get Your Guts In Gear
The 2011 rides are over, sadly. By all accounts, they were an amazing experience for all involved. Stay tuned for information on the 2012 rides. In the meantime, 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:
March 24: Team McCready Global Fundraiser (we'll be in NY this year)
April 21: CCFA Chicago
May: West Coast trip, dates yet to be determined.
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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Drug Wars
As many of you already have found out the hard way, there are increasing obstacles to obtaining your prescription medications -- some of which stem from insurance companies' efforts to control costs, and some of which stem from lawmakers' efforts to improve safety. Despite these laudable goals, patients suffer.
One trend is the creation of "specialty tiers" in insurance coverage. Your pharmacy benefit probably has a first tier for generics; a second tier for acceptable (on the plan's formulary) brand name drugs; a third tier for brand name drugs that are not on the plan's formulary and/or require prior authorization -- those are pretty standard.
But in the past year or so, increasing numbers of insurers are creating specialty tiers. You may pay a $5/$15/$30 copay for the first three tiers, but if you have a specialty tier, you're paying a percentage of the cost of the drug instead of a set copay. If you're on Humira, IVIg or other injectibles, or other expensive medications to treat multiple sclerosis, cancer, rheumatoid arthritis, inflammatory bowel disease, hemophilia, HIV and others, this can cost between $1000 and $3000 per month. Nobody -- at least nobody I know -- can afford to spend $36,000 per year on one medication. However, we talked to a woman whose insurance plan left her with a bill for $3000 per month for IVIg -- that's $36,000 per year. You'd have to be pretty wealthy for that not to hurt.
But specialty tiers are used in about 25% of plans, including 50% of large employer plans. Although there are copay assistance programs -- the Healthwell Foundation, the Assistance Fund, the Patients Access Network Foundation, the Copay Relief program, the Chronic Disease Fund, Patient Services, Inc. -- these are funded by pharmaceutical companies, so they do not help pay the costs of off-label uses (uses of drugs for the treatment of conditions other than that for which the FDA approved them, so, for example, Humira for ulcerative colitis; IVIg for multiple sclerosis). If you're one of millions of Americans who use expensive drugs off-label, not only could you be saddled with specialty tiers, but you also could find yourself unable to access copay assistance programs, leaving you, essentially, without your medication. Of course, this is short-sighted by insurers since, without the medication that works, you will get sicker, perhaps require hospitalization or other care, which will cost your insurer more than it would have cost for the drug. But unfortunately, not all insurers take the long view, as they should.
Many states have been working on legislation that would prohibit the use of specialty tiers. For example, New York already has legislation precluding the use of specialty tiers. In addition, there was a hearing in Maine on January 25 to consider a bill (HP 1243) that would prohibit insurers from requiring cost sharing that would exceed the dollar amount for nonpreferred brand name drugs (brand name drugs not on the plan's formulary). A Vermont proposal (S. 221) would cap prescription drug out-of-pocket costs at $1000 per year. In Hawaii, SB 2106 would cap drug copays at $150 per month, prohibit coinsurance (a percentage of cost rather than a fixed dollar copay), and include prescription drug copays if there is an annual limit out-of-pocket costs. If you live in any of those states, now would be a good time to contact your state legislator and tell them how specialty tiers would -- or do -- affect you. For more information on the Maine bill, go here. For more information on the Vermont bill, go here.
In addition, there is a Bill pending in Congress that would allow Medicare patients to access an exceptions process for drugs in specialty tiers. (HR 3613). Again, contact your members of Congress and ask them to support this legislation.
In some instances, though, states are taking actions that are intended to protect consumers, but have really horrible effects. The best example is legislation passed in Washington State that was intended to reverse a trend of increases in overdose deaths. The law, coupled with new rules passed by medical licensing boards, requires practitioners to document patient backgrounds and behavior, conduct random urine screening, and consult with a pain specialist if daily doses exceed the equivalent of 120 mg of morphine. Cancer, hospice, surgery, and injury patients are exempt.
While this law was well intended, it has resulted in many -- if not most -- doctors simply refusing to prescribe pain medication. Patients have suffered terribly as a result. They can't find pain management doctors, even if they've been on pain meds for many years. However, New York's Attorney General is considering similar legislation. If that happens, expect to have trouble getting pain meds for chronic pain conditions in New York.
Finally, also in Washington state, a law was passed requiring insurers to pay for self-administered chemotherapy on the same terms as IV chemotherapy. Although the law clearly states that the intent was to control out-of-pocket costs associated with oral chemotherapy, one insurer -- Premera -- has used this law as an excuse to raise the cost of oral chemotherapy like 6MP and azathioprine, which are used to treat inflammatory bowel disease and other illnesses besides cancer. We've been in touch with the legislative sponsors of this bill, who are talking to Premera to try to get them to voluntarily change their position.
In sum, the war on illegal drugs may not be getting us very far, but the war on legal drugs is killing us. Pay attention to legislative actions in your state (we try to let you know about them in the Chronicity Project column of this newsletter, below) and contact your legislators, write letters to the editor, and even consider going to the legislature to testify about bills affecting access to prescription drugs in your state.
If you want to get involved and don't know how, contact me at patient_advocate@sbcglobal.net and I'll see if I can help.
Jennifer
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Rare Disease Day: 2/29/2012
 Rare Disease Day 2012 is February 29. So many of you have rare diseases or know and love someone who does. Nearly 1 in 10 Americans has a rare disease. And still, in 2012, it is a battle to get diagnosed and treated. As you know, many of our insurance appeals are for treatments for diseases for which there is nothing FDA approved because researchers can't recruit enough people into clinical trials -- because not enough people have the disease. And so we keep fighting insurers to get coverage of treatments for rare diseases. But before you can get treated, you have to get diagnosed. This often means going to experts who are "out of network" and not covered by your insurance. All in all, our system leaves people with rare diseases feeling isolated and alone. Rare Disease Day is a time when we can come together.
For information about Rare Disease Day and activities taking place on that day, go here.
For action you can take to raise awareness of rare diseases, go here.
For information on the R.A.R.E. Project, go here.
For the National Organization for Rare Diseases (NORD), go here.
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New Guidance on School Accommodations
The US Department of Education has issued new guidance on how the 2008 Amendments to the Americans with Disabilities Act impact the reach of Section 504, which is the law that requires that students with disabilities be provided with reasonable accommodations.
This new guidance states that a student need not have a problem with the "major life activity" of learning; substantial impairment of any of a whole host of major life activities is sufficient to establish that a student has a disability under Section 504. The guidance also confirms that, for a student with an episodic illness, if it would be disabling when flaring, it's considered a disability under Section 504 at all times.
In addition, the guidance makes clear that, even if the student doesn't need special education and related services, the school may have to provide accommodations -- use of an elevator for a student with a lung disease; the ability to make up assignments without penalty if a student has missed a lot of school; and so on.
In other words, we were right all along about what we've been saying to school districts. Now, we have additional ammunition to prove it!
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Nicole's Corner: Chronic Illness and
Dental Health
Did you know that February is National Children's Dental Health Month? Sponsored by the American Dental Association (ADA), it's a time to raise awareness about the importance of kids' oral hygiene. Not only can poor oral health, such as tooth decay and periodontal disease, lead to chronic illness - for example, gum disease is associated with diabetes and heart disease - but is itself a chronic illness. Indeed, a U.S. Surgeon General's 2000 report found that tooth decay is the most common chronic illness among kids, affecting five times as many children as asthma.
While the ADA focuses on providing educational materials to parents and schools on good dental habits, such as flossing and visiting the dentist, we also need to recognize that the reason poor oral hygiene is such a prevalent problem is because too many kids lack dental insurance. In fact, for every child without medical insurance, there are at least 2.6 kids without dental insurance. This means that too many kids - particularly poor and minority children - suffer from untreated tooth pain.
Fortunately, the Patient Protection and Affordable Care Act (healthcare reform) attempts to solve this problem, requiring that all health insurance plans to be sold through the exchanges in 2014 to provide pediatric oral health care services as part of the "essential health benefits" (EHB) package. The EHB includes 10 categories of services that such plans will be required to cover; and by including coverage of children's dental care, we're moving in the right direction toward combating chronic tooth decay and resultant chronic diseases among our youth.
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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
The Department of Labor has proposed a new affirmative action program for people with disabilities who seek to work, or do work, for government contractors and subcontractors. The rules are great -- they will encourage significant hiring of people with disabilities. Here are our comments.
Congress's 2012 budget neglected to fund consumer assistance programs (CAPs) -- units of state government that were created and funded by the health reform law to help consumers find insurance, understand their coverage, and even represent them for free in insurance appeals. The $30 million that this is saving would be outweighed by the gains from helping consumers to fight with their insurers to obtain coverage of medically necessary care. Some states are struggling to find other funds to keep up these programs, but Texas has already closed its CAP (and Texas consumers really need help fighting Blue Cross Blue Shield of Texas, I can say with some experience) and other states will follow. We need to make sure that this funding is restored in 2013.
Contact your members of Congress and tell them what you think. To find your Representative, go here; to find your Senator, go here.
Connecticut The State is establishing various committees through which consumers can offer input on health reform and other health-related issues. You might think, then, that since we are one of the experts on health reform in the State that we would be asked to join these committees. Indeed, we sought to be included in the Health Reform Consumer Advisory Committee -- and we tied with three others for first place. Here's the vote tally. That should have gotten us on the committee, no? Well, not in Connecticut. The Governor's Special Advisor on Health Reform, Jeannette DeJesus, decided to chose others instead, ignoring the vote of the Healthcare Cabinet. She claims that she did so to promote diversity. However, since I am a person with a disability under the Americans with Disabilities Act, you might think that diversity would have been promoted by including me. Ms. DeJesus apparently did not think so. So we are looking for another forum where the voice of the chronically ill can be heard as relates to health reform. And as an illustration of what happens when there are no consumer voices in the discussion, the State has released a final report from the consultant to the Exchange Board, Mercer. Mercer conferred with all the major insurers in the State, and even derived information from UnitedHealthcare's wholly-owned subsidiaries, Ingenix and the Lewin Group, but never talked to a single consumer. As a result, the report is extremely one-sided -- even advocating for the creation of specialty tiers!!! Comments are due Monday February 6. We'll post ours on our blog, so check there on Monday if you're interested. Your State
Hawaii, Maine and Vermont are working on specialty tier legislation. Important links are above in the first article in this newsletter. 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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