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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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Art for Advocacy!
Our dear friend and artist extraordinare, Julia Lucich, has agreed to paint your portrait with all proceeds going to Advocacy for Patients with Chronic Illness. This is a limited time offer, so don't delay. Check out Julia's website here, and email her at the contact info on the website if you're interested in having a Julia original in your home, or presenting one as a gift.
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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!
January 27: Presenting at grand rounds at the Hospital for Special Surgery's rheumatology department.
March 20: Crohn's & Colitis Foundation, upstate New York (Albany)
May 15: PSC Partners Seeking a Cure, Hartford, CT
Come say hello! |
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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.
For Connecticut residents ONLY:
Advocacy for Patients Needs Your Help!
To keep providing these services for FREE, we need your help.
WE DO NOT SOLICIT DONATIONS OUTSIDE OF CONNECTICUT. 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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New Year's Wishes
I have lots of wishes for 2010 -- health care for all, no more war, warm homes for the homeless, food for the hungry. As you know, I invest my time and energy in health care, but I really wish for a world in which compassion is the watchword.
2009 brought great tragedy to many. Answering phones at Advocacy for Patients gave us a bird's-eye view of the full scope of the losses people suffered -- loss of a home, a job, health insurance, and, ultimately, hope. Some days, I've been able to feel like I've made a difference. Other days, I know that the problems are way too big for one sick lawyer to fix.
2009 saw our call volume increase by about 50% without a concomitant increase in our funding. We need to move out of my house so we can make room for a second lawyer or advocate -- and then we need the money to pay that person. We'll start by adding a part-timer early in the year, pursuant to a grant we got to start an IVIg patient resource center to help patients appeal insurance noncoverage decisions of IVIg for a whole host of illnesses, from multiple sclerosis to immune deficiencies, but my hope is that 2010 will allow us to grow to serve expanding demand.
We've come a long way, though, and my greatest wish is that we can keep on keepin' on, as they say. We'll serve over 1500 patients in 2010. We'll get some insurance coverage, keep some jobs, help some kids stay in school. And I will show, every day, that no matter how sick you are, you can still make a difference in the world.
And that is my greatest wish -- that you know and believe that you can make a difference. If everybody did all they can do, the world would be a far better place for each of us. So whether it's me running Advocacy for Patients while running to the bathroom all day, or Barbara Lynn conducting her annual One Hour Challenge without leaving her home, or the $5 donations we get that mean so very much to us because we know it is from the heart -- please try to make the world a little better for others in 2010. I promise it will come back to you many times over.
Happy New Year. Jennifer
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Health Insurance Reform UpdateWell, we now have a House Bill, and a Senate Bill. Both plans eliminate pre-existing condition exclusions, lifetime caps on benefits, premium rates based on gender and health status/history, and cancellations of policies based on health status/history. Most of these changes will take effect in 2013 (House) or 2014 (Senate), but it looks like lifetime caps will be phased out sooner than that. But in great news for those of us with pre-existing conditions, both Bills establish national high risk pools. The
Senate's high risk pool would be up and running within 30 days of
passage of the Act. You would qualify for the high risk pool if you
have a pre-existing condition and can't get affordable insurance. Both plans have insurance "exchanges" or marketplaces where you can research all of your insurance options. The House version has as one such option, a public option. But that cannot pass the Senate, so it will come out. The Senate plan also allows nonprofit co-ops to start health insurance plans. Out of pocket costs and premiums are limited, and subsidies or tax credits for people who earn under 400 percent of the federal poverty level. The out-of-pocket caps are higher under the Senate version, but both would eliminate the possibility of catastrophic losses, thereby (we hope) eliminating medical bankruptcy. And both plans increase Medicaid eligibility to 133 percent of the federal poverty level. Both plans also make some improvements to Medicare. The House bill eliminates the doughnut hole (the prescription drug coverage gap) and the word is that the Senate will agree to this. This will be a HUGE improvement for the chronically ill on Medicare. Both plans include a requirement that individuals have insurance. The House penalty is greater than the Senate's, but neither is high enough for the insurance industry to feel comfortable that they will get a lot of new healthy enrollments to balance out the new enrollees with pre-existing conditions. The House requires employers to provide insurance, whereas the Senate does not. However, the Senate does impose a fee for each employee who is not covered and gets a tax credit. The two plans pay for themselves in different ways -- this may be the biggest difference between the two. The Senate taxes so-called "Cadillac plans" -- plans that cost more than $8500 for an individual and $23,000 for a family -- at 40%. In addition, the Medicare payroll tax is increased from 1.45 percent to 1.95 percent for people earning more than $250,000. The Senate draft also imposes a 5 percent tax on elective cosmetic procedures (procedures needed to correct congenital and other deformities are exempt) and tanning salons. In addition, the Senate would impose a $2 fee per person on insurers and health plans (including self-funded plans). The House, instead, imposes a 5.4 percent income tax on individuals earning more than $500,000 and families earning more than $1 million. We're likely to see the Senate version for the most part. And then there is abortion. The House bill prohibits all plans sold through the "exchange" from covering abortions for women receiving subsidies except to save the life or health of the mother. The Senate bill attempts to segregate the private money from the tax credit (or subsidy), and prohibits the use of public funds to pay for abortions. Women who purchase coverage of abortion will actually have to write a separate check for that portion of their premium. Since the Senate compromise makes both sides miserable, I suspect we will have a deal. Both Bills prohibit illegal immigrants from participating in plans sold through the exchange, including the public option, and also including any plan towards which a person could receive a subsidy or tax credit. The Kaiser Family Foundation has a great side-by-side comparison of the proposals here. For information about some of the truths and untruths of health care reform, see White House Reality Check and Factcheck.org, as well as our blog.You can reach the Congressional switchboard at 1-866-210-3678.
To find your Representative, go here; to find your Senator, go here. |
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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 legislature is grappling with the deficit. The Governor's deficit mitigation plan would be a disaster for the sick and the poor. Indeed, there already have been many changes made that make it harder for low-income people, the elderly, and those with mental health illnesses to get prescription drugs. In addition, the Department of Social Services succeeded in getting the authority to narrow the definition of "medical necessity" for HUSKY enrollees, thereby narrowing the scope of services that will be provided to Medicaid recipients. On a good note, as of January 1, 2010, primary care case management for HUSKY enrollees in Hartford, New Haven, Waterbury, Windham/Willimantic. This program is a wonderful alternative to managed care for people with chronic illnesses. Instead of having your care coordinated by an insurance company, it can be coordinated by your own doctor. Sign up today.
As always, it's always good to contact your State Senator or Representative and tell them how you feel about things.
Your State
So many of you ask me what you can do. 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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