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TAKE THE NIH SURVEY!
Finally, it's ready! 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, please send your mailing address to: patient_advocate2@sbcglobal.net and we will mail you a packet of info, including consent forms. 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! Well, okay, I didn't just find this one, but you should. ChronicBabe's Jenni Prokopy is all about what it's like to be a Gen Y-er with a chronic illness. She's hot stuff, folks -- remember that you heard it here first!
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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!
August 8: Speaker at the Crohn's & Colitis Foundation Educational Seminar in Nashville. September 15: Speaker at Crohn's & Colitis Foundation in Manhattan.
October 3: Keynote speaker at the IBD Educational Seminar in Atlanta. October 26-27: Meeting for NIH grantees about our chronic illness survey and other similar projects.
November 13-14: Keynote speaker at the Association of Pediatric Gastroenterology and Nutrition Nurses conference in Washington, DC.
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.
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No Vacation for Health Care
Once again, the bulk of this month's newsletter will focus on health care reform on the federal level.
THIS IS A CRITICAL MOMENT. If you care -- and you'd better, because this is about YOU -- please read and ACT.
The good news is that there seems to be real consensus on some really important issues (as best we can tell as of today). If any version of health care reform passes, once it takes effect, there will be no more pre-existing condition exclusions; insurance will be available to everybody, and you won't be charged more because of your health problems or claims history. There most likely will be a firm cap on out-of-pocket expenses, so there will be no such thing as catastrophic loss ever again. Medicaid will be expanded significantly to cover people with incomes at around 133% of the federal poverty level, and for the first time, adults without children who have not been found to be disabled by the Social Security Administration will be covered. There will be premium subsidies for the middle class (the question remains how high one's income can be and still qualify for a subsidy), and there will be subsidies for small businesses that provide insurance for their employees, or they will be exempt from requiring to provide insurance. It's also likely that the effects of the "doughnut hole" gap of coverage in Medicare Part D at least will be moderated somewhat; the drug companies have agreed to provide discounts on drugs when a beneficiary is in the doughnut hole.
There are still some issues as to which there is not yet complete agreement. Some want a public option to compete with private health insurance. Indeed, the Commonwealth Fund came out with a report that found that a public option -- a choice of a plan that is run by the government, which would be available IN ADDITION TO all of the private insurance plans on the market -- would save $200 billion over 10 years. Most importantly, it would keep insurance premiums down because the private insurers would have to compete with the public option. However, conservative Democrats (so-called Blue Dogs) and Republicans would prefer not to have a public option. There is talk about a possible co-op plan, sort of a network of insurers all offered through some sort of public or non-profit vehicle.
And there's still a lot of talk about how to get it paid for. As best I can tell, if there's a robust public option, we generate $200 billion right there. We will reduce excessive payments to private insurers who run part of the Medicare program for a cost that greatly exceeds what it costs the government to run the exact same program. By reining in costs and eliminating excesses, health care reform largely will pay for itself. In any event, the President has promised that he will not support anything that is not deficit-neutral, so the horror stories you've been hearing just aren't true.
We are close, folks. We really can get health care reform this year (effective dates will be a way off, but at least we'll know what to expect).
But none of this happens if the Bills don't get to the Floor. There will be a House version and a Senate version (right now, there are two Senate versions). The House has to pass its version and the Senate has to pass its version before the real work to reconcile the two can begin in what's called the "conference committee." None of this is certain to happen.
If you care -- and I believe everybody on our email list does -- you MUST ACT NOW. Call the Capitol switchboard and ask to be connected to your members of Congress. 1-800-828-0498. We need to flood them with calls.
In addition, August is the month during which Congress takes its recess, which doesn't mean they don't work; but it does mean they are at home IN YOUR DISTRICT. Go to events where they will be present and talk to them. Call the local office of your member of Congress. Ask to meet with them or meet with staff. Call and tell them how much this matters to you.
What should you say to your member of Congress? Keep it personal -- tell your story, why you care. Were you denied coverage because of a pre-existing condition? Did your insurance company deny coverage for something your doctor said you needed? Have your premiums increased to the point at which you are choosing between paying your mortgage and paying for your health insurance? Are you a small business owner struggling to provide insurance to your employees? THAT's what you should be talking about.
To find your Senators, go here. To find your Representative, go here.
NOTE: Things are changing so fast that updating you once a month may not be enough. So for more frequent updates, please check out our blog, where we continue to post updates related to health care reform efforts throughout the month.
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United Nations for ALL!
On July 30, 2009, the United States joined 141 countries in signing the United Nations Convention on the Rights of Persons with Disabilities. Secretary of HHS Kathleen Sebelius said "[t]he signing of the UN Convention sends an important message that this country is
committed to equal rights for people with disabilities, in the United States and
around the world."
About time.
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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've described the outlines of the various plans above. If you want health care reform to happen this year, please help to flood the Congressional switchboard with calls to 1-866-210-3678. Make sure your Senators and Representatives know that you want change NOW. To find your Representative, go here; to find your Senator, go here.
Connecticut
The Universal Health Care Foundation's SustiNet proposal, RB 6600, was passed by the General Assembly and then vetoed by the Goveror. However, on July 20, 2009, the General Assembly overrode the veto, and SustiNet became law!!!!!!! I am overjoyed, not only because I am in favor of universal health care, but because SustiNet contains the most thoughtful chronic disease managment proposal I have ever seen, including involving patients in developing care management plans, and ensuring that chronic disease management not stop at the door to the medical office, but extends to work, school, and home life as well. This is why I have supported SustiNet so strongly, and why I am thrilled by its success.
The Connecticut
Restroom Access Act became law when signed by the Governor on June 18,
2009. Patients with digestive diseases should carry a note from their
doctor documenting their need for restroom access. Retailers will now
have to let us use employee restrooms. Expect it to take some time for
retailers to know the law exists. You can access the full text of the
Act here.
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 Family Foundation Daily Health Policy Report, 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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