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TAKE THE NIH SURVEY!
LAST CHANCE!!!
The survey ends this month, so you have one last chance to take the survey here! Whether you are a patient or a caregiver, there's a version of the survey for YOU!
As you know, in partnership with the Center for Managing Chronic Disease at the University of Michigan, we have received a grant from the National Institutes of Health. The purpose of the study is to examine the challenges faced by the chronically ill, and ways in which interventions can be more effective in addressing those challenges.
You can TAKE THE SURVEY NOW online, or you can take the survey over the phone if that would be easier for you.
If you want to take the survey by phone, just give us a call at (860) 674-1370 and we'll set it up for you. Thank you!
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Look What I Just Found!
I've been learning a lot about a rare disease called neuromyelitis optica (NMO or Devic's disease), sort of a combination of transverse myelitis and optic neuritis. The leader in the patient community fighting to find a cure is Victoria Jackson of the Guthy-Jackson Charitable Foundation. Check them out -- amazing work.
Also this month, check out the Global Genes Project of the Childrens' Rare Disease Network. Even though you're getting this after Rare Disease Day, they have lots of great activities in mind for increasing awareness of rare diseases that affect children.
And last but not least, I want to remind you about Lybba. Created by the famed director Jesse Dylan (who's made a lot of things you've seen, including the Obama Yes We Can video), Lybba will be a website that will make all of the world's medical knowledge available to all patients for free. Complements of Advocacy for Patients, it also will include information on legal, insurance, and financial assistance issues.
For now, Lybba ia a splash page with a growing presence on Facebook. Sign up now for updates and get in on the ground floor. Lybba is the future of health care on the internet, complete with social networking. Check back here montly for updates.
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It's Too Hard to Be Sick in America
Our new book, It's Too Hard to be Sick in America, is now 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 on the Move!
March 20: Crohn's & Colitis Foundation, upstate New York (Albany) April 10: Wishlist Foundation GLOBAL Benefit for Advocacy for Patients -- see their website for details. We'll be in Hartford celebrating our FIFTH BIRTHDAY! April 25: Dystonia support group at U. Conn. Health Center, faculty lounge off the cafeteria. May 15: PSC Partners Seeking a Cure, Hartford, CT. June 13: Get Your Guts in Gear closing ceremonies, Saratoga Springs. October 23 (tentative): Nashville CCFA.
Come say hello! |
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Get Your Guts In Gear
Advocacy for Patients is a beneficiary of Get Your Guts in Gear's 2009 Rides. To learn more about the 2009 Rides in New York, Seattle, and the Midwest, and how you can participate as a rider or volunteer crew member, see their website for details or call 866-9IGOTGUTS (866-944-6848). |
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 Connecticut. Nevertheless, generous donors from many states make unsolicited donations for which we are very grateful.
THANK YOU!
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Bipartisan Bitterness . . . or Micro-Reconciliation
On Thursday February 25, 2010, a live televised bipartisan summit -- the first of its kind as far as we know -- was held to try to reach consensus about health insurance reform. This followed the release of a proposal (finally) from the White House that was intended to merge all the good things in the House and Senate versions, and also reach out a few fig leaves to the Republicans.
The White House's 11-page summary had many of the same insurance market reforms that were in both the House and Senate bills: no preexisting condition exclusions effective 2014. Within 6 months of
passage, there will be high risk pools for people who cannot obtain
insurance because of pre-existing conditions. Individuals would
be required to purchase insurance, and would receive tax cuts if their
income is not over certain limits in order to make their insurance
premiums more affordable. Individuals who fail to buy insurance will
pay a flat, sliding-scale fee. Employers would not be required to cover
employees, but they would pay a fee for each employee they do not cover
who requires a subsidy.
Ultimately, there would be no more
lifetime or annual caps on benefits (effective 2014). Rescissions or policy cancellations due to illness will be prohibited.
There
will be Exchanges -- an electronic marketplace -- where consumers can
shop for available insurance company options. And there is one new item stimulated by recent premium increases as high as the 39% increases announced by Anthem BCBS of California, a
national entity that would govern or control health insurance premium
increases.
Premiums will be limited to a certain percentage of
income (sliding scale, anywhere from 2.2% to 9.5%), and the middle class up to families of 4 with $88,000 of
annual income will receive assistance with health insurance costs.
Medicaid
would be increased to 133% of the federal poverty level, and the
federal government will pay for this increase for the first two years,
with the state share increasing over time after that. The controversial
deal that was struck for some states -- most notably, Nebraska -- are
eliminated.
The Medicare doughnut hole -- the gap in coverage of
prescription drugs -- will be eliminated, and the subsidies currently
paid to private HMOs that administer Medicare -- Medicare Advantage
Plans -- would be eliminated.
The excise tax on so-called
Cadillac plans would be delayed to 2018, and would be increased to plans
that cost $10,200 for individuals and $27,500 for families. So if you
have a high cost plan, it will remain intact until 2018 if you choose
to stay with it.
There would be a stronger appeal process for
denials of coverage, similar to the independent reviews that exist in
most states today. Also, children would be able to stay on their parents'
policies to age 26, and preventive care would be free.
Once
the Exchanges are set up, insurers could not base premiums on health
history, gender, genetic information, domestic violence, or salary. Much emphasis is placed on wellness and prevention programs for controlling the cost of chronic illness.
This was the proposal going into the February 25 summit.
The summit did not change a single thing. The President tried time and time again to point out areas of complete agreement -- like most of the insurance market reforms -- and opponents refused to discuss any particular provisions whatsoever. Nobody even tried to use the word "negotiation" when describing what had taken place over seven full hours of stump speeches that led nowhere.
The President urged opponents to look at the insurance market reforms and identify those with which they truly disagree. Because it sure seemed like there was agreement on eliminating pre-existing condition exclusions, for example. Still, opponents demanded that the discussion start over from scratch, with a blank piece of paper. Otherwise, there was nothing to talk about. Opponents would not accept even the elimination of pre-existing condition exclusions as a common starting point, it seems.
The President explained how the Exchanges will work -- allowing small businesses and individuals to become part of larger purchasing pools so as to decrease costs, just as we all know Walmart is able to charge lower prices because they purchase in huge bulk. The only point of disagreement, the President said, was on whether plans sold through the Exchange should be required to offer a baseline of coverage to make sure that people have the basic coverage that all members of Congress have. Couldn't we all agree on the concept of larger purchasing pools, though? Apparently not.
The President explained his concern about allowing unfettered sales across state lines -- insurers will "shop" for states with the fewest regulations, and that's where they'll all base their policies (he called it a "race to the bottom"). Still, he said, he's willing to allow sales across state lines as long as state regulations remain in effect for plans sold in that state. But that's not good enough.
Over and over, the President tried to define starting points where the parties could agree to begin, and over and over, his attempts were rebuked. Although the opponents said they know the system is broken and needs to be fixed, they refused any starting point for discussion other than a clean slate. Start over from scratch, they said over and over again.
Must Congress really spend another year banging their heads together and making no progress whatsoever? Do the majority of Americans really disagree on even the most basic premises, like eliminating pre-existing condition exclusions? If both parties were negotiating in good faith, couldn't they have found SOMETHING to agree up, some starting point?
I confess, I was bitter. At all of them. President Obama is not a hero in all of this, although I do believe he held out some (perhaps misguided) hope that, even this late in the game, there could be some agreement on some issues. But it was too little leadership way too late in the game. His lack of leadership last August, when the President allowed Max Baucus to dither around just to get Olympia Snowe's lone Republican vote on the Senate Finance Committee, is what cost us a bill that would have passed months ago, and that already should be starting to take effect.
No, my bitterness was bipartisan. Because what Congressman Rangel said really is the only important point: sick people aren't Democrats or Republicans -- they're Americans! We're talking life and death here, and the people we've elected to represent us in Washington still don't get it. While they traded tragic stories of how health insurance has failed us, on the one hand, and how big government is going to destroy us, on the other, people are dying. Indeed, we at Advocacy for Patients are so overwhelmed with requests for assistance with insurance denials right now that I couldn't watch much of the summit -- I was too busy trying to clean up the mess we're in. Hey, you folks in Washington, I really could use some help here when you get finished posturing as if the only thing that matters is the mid-term elections next November!
But wait a minute. I heard a new word today: micro-reconciliation! The 11 page Obama draft was, says Ezra Klein of WaPo (and others) was just the list of fixes that would have to be made to the Senate bill so the Senate Bill could be passed by the House Democrats . . . and the Senate could pass these 11 pages of changes as "micro- reconciliation," by a majority of only 51 votes, so we end up with the Senate bill as tweaked by the President and his allies - DONE!
And there goes my bipartisan bitterness. 'Cause if this is what President Obama meant to do all along -- if he was inventing micro-reconciliation while all the while the bipartisan bickering was leading to bipartisan bitterness . . . well, that just makes him a Genius, with a capital 'G.'
So matter how many times you've called or written before, it's critical to keep up the pressure on Congress. So please call or write your members as soon as possible. You can find your member of the House of Representatives here and your Senators here. This is going to affect all of us one way or another. So make your voice heard; tell your story and explain why this matters to you. It really does make a difference.
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NEW IVIg Patient Resource Center
Intravenous immune globulin (IVIg) is a blood product that is FDA approved to treat several illnesses, but that often is used "off-label," to treat illnesses for which it is not FDA approved, but for which it is very effective. Because these uses are off-label, insurers often deny coverage. That's where we come in. Advocacy for Patients has had good success in getting IVIg covered for multiple sclerosis, lupus, transverse myelitis, and other illnesses.
Since there are more patients than there are staff at Advocacy for Patients, we decided to create a resource where patients can go and learn to write their own insurance appeals for IVIg. There is general information about IVIg; general information on how to write insurance appeals; and then specific information -- sample insurance appeals, medical journal article abstracts -- for specific diseases. We will be adding more specific disease information over the next year or so, so keep checking back,and if you have a need that isn't being met, let us know and we'll move your disease up on the "to do" list and try to get you help as quickly as we can.
Patients can write their own insurance appeals if only they are given the tools. So here you go!
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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
Other than health care reform, this is important:
If you're a patient with an immune or autoimmune disease, you may be interested in S. 701 and HR 2002, bills to improve access of Medicare beneficiaries to intravenous immune globulins (IVIg). This is critically important legislation designed to eliminate some of the existing obstacles to getting this much needed treatment. So contact your members of Congress to support this legislation.
To find your Representative, go here; to find your Senator, go here.
Connecticut
The Connecticut legislative session has begun. It's a short session and most of the focus will be on the budget. If you have an opinion about how budget cuts can and should be made, or new revenue raised, contact your members.
Here are a few items of interest:
HR 5303 An Act Requiring Reporting of Certain Health Insurance Claims Data - would require managed care organizations to report claim denials to Insurance Department. Hearing on March 4, 2010 1 pm Room 2B of Legislative Office Building SB 194: - Eliminates Insurance Department's ability to simply allow premium rate hikes to take effect without a public hearing.
- Requires insurers to notify policyholders of requests for rate increases and the date, place, and time of the public hearing.
- Limits reasons for rate increase, puts burden of proving that increase is "reasonable" on insurer.
- Empowers Attorney General and state Healthcare Advocate to intervene in rate cases and appeal rate decisions to Superior Court
SB 5235: An Act Concerning Evidennce of Noncoverage of Health Insurance - requires insurance companies to notify consumers in writing that a claim has been denied, include the relevant provision of the insurance policy, and instruct the consumer to contact the Office of the Healthcare Advocate for assistance with an appeal. HB 5219: An Act Extending State Continuation of Health Insurance Coverage - extends COBRA coverage from 18 months to 30 months so that laid off employees can keep their coverage for a longer period, at the lower group rate, as they look for new jobs. As always, it's always good to contact your State Senator or Representative and tell them how you feel about things.
Your State
Hawaii SB 2494 requires health insurers to offer at least the same drug coverage to the insured that the insured had under the insured's previous policy with a different insurer or like entity. In other words, the bill will provide for continuity of drug coverage when a patient either switches plans or renews their existing plans. From the Alliance for Plasma Therapy: Nebraska State Senator Abbe Cornett introduced legislation to ensure that patients with chronic conditions do not have their medications moved to specialty tiers, thereby making them unaffordable. A public hearing will be held on February 16 before the Insurance Committee. This bill would affect IVIg, biologics, factor, and other expensive medications. Attendance at the hearing is absolutely essential. If you are willing to testify about your personal experience, please contact Michele Vogel at the Alliance for Plasma Therapy through the link above. What's happening in your state? Shoot me an email and I'll add it to our next newsletter. 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
Advocacy for Patients with Chronic Illness, Inc.
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