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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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| 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 on the Move!
June 12-14: Get Your Guts in Gear New York Ride
August 8: Speaker at the Crohn's & Colitis Foundation Educational Seminar in Nashville.
October 3: Keynote speaker at the Crohn's & Colitis Foundation Educational Seminar in Atlanta.
November 13-14: Keynote speaker at the Association of Pediatric Gastroenterology and Nutrition Nurses conference in Washington, DC.
Come say hello! |
Advocacy for Patients
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Need help? Call (860) 674-1370 or email us.
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May 2, 2009
May 2, 2009 was one memorable day for Advocacy for Patients with Chronic Illness, Inc. -- and for me!
First, I flew to Chicago and gave two talks to PSC Partners Seeking A Cure, a group dedicated to the primary sclerosing cholangitis patient community. I gave the group an overview of the legal rights of patients with chronic illness and, in particular, liver disease. I loved the energy in the room and was really inspired by all those people traveling from all over the country to spend some time together and offer each other support. It was a great event, and I was honored to be a part of it.
Then I flew to Seattle. Yup, same day. Why?
Pearl Jam's Mike McCready played a benefit concert with his bands, Flight to Mars and Shadow '86, to benefit Advocacy for Patients with Chronic Illness and the Crohn's & Colitis Foundation's Camp Oasis. The music was awesome. Duff McKagan played a set with his band Loaded, which were really awesome -- I strongly recommend catching them if you have the opportunity.
Pearl Jam fan-based nonprofit the Wishlist Foundation held a pre-show auction and a raffle to benefit Advocacy for Patients and CCFA Camp Oasis, too!
So in one day, I flew to Chicago, gave two talks, flew to Seattle, attended a GREAT benefit concert -- whew -- and then collapsed at around 3 am Seattle time. It was a 26 hour day! But I wouldn't have missed it for the world.
Great concert. Great friends. Great time.
Special thanks to Wishlist, Chris Adams, Ashley O'connor, and the totally awesome Mike McCready, who all have gone so above and beyond for Advocacy for Patients. We are SO grateful.
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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. We have participated in too many discussions of health care reform and, in particular, chronic disease management, in which chronic illness is mischaracterized and misunderstood. So we've written up some of your stories -- and, of course, changed the names and other details to protect your privacy -- to help guide these discussions and ensure that policy makers fully understand the obstacles that we have to overcome every day.
So 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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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
Health care reform is being designed as we speak. The Democratic leadership hopes to have a draft plan as early as next month. Keep an eye out, read what you can about it, and then make your voices heard.
There are two pieces of what I suspect will be included in health care reform already pending, as we told you last month.
Ending the Medicare Disability Waiting Period Act of 2009, S. 700, H.R. 1708, was introduced by Senator Jeff Bingaman (D-NM) and Rep. Gene Green (D-TX). This legislation would eliminate the two-year waiting period between being awarded Social Security Disability Income and being eligible for Medicare.
Rep. Joe Courtney (D-CT) introduced the "Preexisting Patient Protection Act of 2009" (HR 1558) on March 17, 2009, along with 12 original cosponsors. This legislation would eliminate pre-existing condition exclusions from all health insurance policies.
One other critically important piece of legislation that recently was introduced is the Medicare Patient IVIG Access Act of 2009, HR 2002. This legislation would address inadequate Medicare reimbursement for this life-saving treatment that currently restricts patient access to intravenous immune globulin (IVIg) that is used to treat immune deficiencies, multiple sclerosis, and many other autoimmune and neurological conditions.
Please take a moment and call or email your member of Congress to comment on these measures -- thank your member of Congress if he/she voted for the stimulus, and encourage him/her to support health care reform. You can find the contact information for your member of Congress here.
Connecticut
The Universal Health Care Foundation's Sustinet proposal, RB 6600, was voted out of the Public Health Committee of the General Assembly on March 26. This is a huge step forward in our efforts to achieve universal health care in Connecticut. Section 6 of Sustinet addresses chronic illness management in a truly novel and thoughtful way, by ensuring that patients are involved in managing their own care. Now that the bill is through the necessary Committees, next stop is a full vote. May 13 is SustiNet day at the Capitol all day. Even if you can't come until after work, please show your support for universal health care in Connecticut.
The Connecticut Restroom Access Act, RB 6328, was unanimously approved by the Public Health Committee. Next stop is a full floor vote.
If you are with me in wanting universal health care and/or needing a bathroom NOW, please contact your State Senator or Representative and ask them to make sure that these bills get the full vote that they deserve.
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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