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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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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.
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| 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. |
Look What I Just Found! In a new Advocacy for Patients newsletter addition, I will be introducing you to people and organizations I've just met. As our first of this series, I have chosen CureTheProcess, a Foundation dedicated to accelerating the process for regulatory review and approval of treatments for rare diseases.
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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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Health Care Reform This issue of our Newsletter focuses on federal health care reform proposals. Over the next two months, the Senate Finance Committee, Senate Health Education, Labor and Pensions Committee (HELP Committee), and the three Committees in the House of Representatives with jurisdiction over health care are expected to mark-up (discuss, amend, refine) their various proposals before they are debated by the full Senate and House of Representatives.
Luckily for you, we have reviewed the more than 1,500 pages of proposals that are available to the public, so we can give you the broad outlines. Note that the House and HELP Committee have drafted legislation, whereas the Finance Committee has provided a discussion paper with the details left to be determined.
All plans for health care reform would eliminate pre-existing condition exclusions or limitiations. All insurance would be "guaranteed issue," which means it has to be offered to everyone. In addition, all of the plans eliminate lifetime benefit maximums. Further, all of the plans would impose some sort of obligation on people -- either individually or through employer requirements -- to be insured unless they are exempted due to unaffordability, even with subsidies for individuals and families depending on their income level.
One aspect of the reform debate that has received a lot of public attention is whether there should be a public plan option in addition to the alternatives available in the commercial insurance market. Of course, the insurance industry does not want a public plan, and they have begun to run commercials intended to scare us into thinking that government will "ration" our health care. Those of us who have had to deal with an insurance company's denial of coverage know that health care already is rationed by insurance companies, so the question really is whether, as President Obama says, we would benefit from competition between commercial plans and a government option. Both the House and the HELP Committee would include a public plan, although the HELP Committee's proposal for what a public option would look like remains vague; the Senate Finance Committee is still studying the issue, and is considering, in the alternative, some sort of state-run "co-ops" that would make it easier for people to find and purchase insurance, but would not really constitute an alternative to commercial insurance.
One public option that we are very concerned about is a Medicare for All approach because of the 20% coinsurance for Medicare services, which will disproportionately impact those who use more services, i.e., the chronically ill.
In addition, at least the House and HELP plans would limit copays or coinsurance or annual out-of-pocket maximums in some way. The House version defines an essential benefit package, and requires that all plans offer at least that level of coverage. The Senate HELP version provides that the essential benefit package will be defined by an outside Council created by the legislation. The Senate Finance version remains sketchy on the benefit package that would be required -- if any.
It appears that all three proposals will have some sort of Exchange or Gateway that would present consumers with their options in choosing plans. The House version would put employers into the Exchange and essentially eliminate the distinction between group and individual insurance; the HELP Committee version focuses on individuals purchasing through the Gateway. The House Exchange or HELP Gateway will offer three levels of plan, with varying copays and deductibles, and no cost-sharing for preventive care.
Of particular interest to those of us with chronic illnesses, the HELP Committee proposal and the House proposal both include some degree of implementation of a "medical home" model of chronic care management. The basic idea is that primary care physicians will coordinate care among specialists, and will be the point person for the patient. In addition, it looks like all versions will provide incentives for medical students to become primary care providers.
Finally, there is great concern for cost. All of the Committee Chairs have promised the President that their reform bills will be cost-neutral by reducing current costs by streamlining the system, and reducing payments to Medicare Advantage Plans (which are paid 14% more than it costs traditional Medicare to provide the same care). The Finance Committee has already stated that it will provide premium subsidies only to people earning up to 300% of the federal poverty level, as opposed to the 400% that is in the House bill and 500% in the HELP draft.
Obviously, there is much more to say about private insurance, Medicare, and Medicaid, but hopefully this will provide you with enough of an overview so that you can follow our national discussion of health care reform as it proceeds over the coming months.
We have submitted written comments to the Finance and HELP Committees, and our comments are posted on our blog. Click on the Committee name for the relevant comments, or just go to our blog here. To the extent that things happen more frequently than we send out these monthly newsletters, the blog will be a good place for you to go to get the latest.
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Me on Faith
In case you missed it, you can now listen to my interview with Faith Middleton here. It was very exciting to be interviewed by a Peabody-award winning journalist, so give it a listen.
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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 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. The Universal Health Care Foundation's SustiNet proposal, RB 6600, was passed by the General Assembly. We expect the Governor to veto it, and there may well be an effort to override her veto, so this one's not over by a long shot. It's important that I explain that my support for SustiNet is not a knee-jerk reaction in favor of all universal health care. 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 support SustiNet so strongly.
If you are with me in wanting universal health care, please contact the Governor and ask her to sign SustiNet. If she signs it, please remember to thank her. If she vetoes it, please contact your State Senator or Representative and ask them to make sure these bills are enacted.
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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