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TAKE THE NIH SURVEY!
We've hit our target of 1500 respondents -- so thank you -- but we've decided to continue to accept responses for a few more months. So you can still 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!
The Charter for Compassion. It's exactly what it sounds like. Please go now and sign up.
And 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)
May 15: PSC Partners Seeking a Cure, Hartford, CT
Come say hello! |
| Know Your Rights Handbook |
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Want to be your own advocate? Learn how by ordering the Know Your Rights Handbook today. Click here for more information. |
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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STAND STRONG FOR HEALTH INSURANCE REFORM
On Wednesday morning January 20 -- a year to the day after I watched Barack Obama be sworn in -- I felt like
someone had died. I've worked so hard on health insurance reform, as
have so many others. I couldn't bear the thought that one Senator-elect
from Massachusetts could really end it all.
My first reaction
was to say let's pass incremental pieces, let's do what we can, and
keep working on a broader solution in small steps. I even wrote a letter to the President urging him to at least pass insurance reforms, eliminate pre-existing condition limitations, lifetime caps, policy cancellations -- enough of a change so that I would have something to offer to the people who call me for help.
I WAS WRONG.
The fight for real reform is not over. We can still get it done. Indeed, we have to. The cost of failure is intolerable. I got three calls last week that proved this to me. - First, a family living in a car with no access to health care of any kind.
- Second, a senior citizen who lost his house and had to file bankruptcy. He'd planned for retirement, but not for copays that would break him.
- Third, a lung transplant recipient who lost her health insurance and can't afford anti-rejection medications any more.
Those three calls reminded me that failure is not an option -- period.
If
the House passed the Senate bill AND a second bill incorporating the
changes to the Senate bill that were negotiated by leadership -- almost
all of which affect budget issues -- the Senate could take up the
second House bill under reconciliation -- a procedure that requires
only 51 votes rather than 60. Reconciliation can be used to pass bills that have an impact on the federal budget.
Well, it sure seems to me as though the issues involved in health insurance reform that are still in play all affect the budget. - Subsidies affect the budget.
- The effective date of the reforms affects the budget.
- Whether the Exchange is national or state affects the budget.
- The scope of Medicaid expansion affects the budget.
- Eliminating the doughnut hole is about the budget.
- The so-called Cadillac tax on high-cost plans affects the budget.
- Even the abortion issue is about funding,
not about abortion.
WE CAN STILL GET THIS DONE.
Now is not the
time to give up. We musn't retreat. We've worked way too hard to just
start over. And the cost of doing nothing is unacceptable -- people
with pre-existing conditions who can't get insurance, people with
chronic illnesses who lose insurance to lifetime or annual benefit
limits, people whose insurance premiums are higher than their mortgage
payments.
The fight is not over. Senator Kennedy was right. Hope is alive; the cause endures. Stay strong.
And call your member of Congress TODAY -- RIGHT THIS MINUTE!!! You can find your House member here and your Senator here, or call 1-800-828-0498. Don't delay.
It's really a matter of life and death. Yours, mine, ours. We've come too far to give up. Tell Congress and the President
WE NEED HEALTH REFORM NOW!So if you hear your member of Congress backing off, supporting a plan for health reform that's major premise is medical malpractice reform, remember that does NOTHING for patients except make it even harder to sue if you're harmed by your doctor. Tell your member of Congress NOW that you want REAL health reform that benefits patients -- that eliminates pre-existing condition limitations and lifetime and annual caps on benefits, that sets out-of-pocket limits that ensure against medical bankruptcy, and that somehow controls the growth of health insurance premiums, limiting the amount of profit insurers can make off of you and me (called the "medical loss ratio" or the percentage of premium dollars that go to actually paying for health care vs. administrative expenses and profit). We need an exchange -- a marketplace that allows us to compare plans and choose our insurance as informed consumers. The poorest of the poor need Medicaid expansion, and the middle class needs subsidies -- the only question between the House and Senate versions is how much you can earn and still get a subsidy. And until the changes kick in, we need a high risk pool for people with pre-existing conditions so they can get insurance NOW! These core provisions, which help those of us with pre-existing conditions and protect consumers against unbridled cost, must be part of where we end up. STAND STRONG FOR HEALTH INSURANCE REFORM!
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February 28, 2010: Rare Disease Day
February 28, 2010 is Rare Disease Day. On this date, we will seek to raise awareness of rare diseases and understanding of the challenges faced by
patients and their families. For more information about Rare Disease Day activities, go here. Go there and tell your story, or read the stories of others suffering from rare diseases and the unique challenges they face.
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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 begins in February. It's a short session this year, and typically not much gets done in these off-years. Watch for budget cuts in basic services to the poor and disabled. Meanwhile, the Department of Social Services is changing the definition of "medical necessity" for the Medicaid program, allowing it to pay for "similarly effective" treatments instead of medical equivalents or therapeutic equivalents. A hearing should be held in the next couple of weeks. Again, people are needed to testify. If you're willing to testify in Connecticut, please let me know and I'll be sure to let you know when and where the hearing will be held.
As always, it's always good to contact your State Senator or Representative and tell them how you feel about things. Your State
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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