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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!
April 4: Speaker at the Crohn's and Colitis Foundation Educational Seminar in Chicago.
May 2: Speaker at the PSC Partners Seeking a Cure (primary sclerosing cholangitis) in Chicago.
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
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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Hemophilia and Me
On March 13, 2009, I had the honor of being the keynote speaker at the annual conference of the Hemophilia Federation of America (HFA). I gave an updated version of a talk I've given in different forms before called "My Own Civil Rights Movement." Those of you who know me know that I believe that the fight for the rights of the chronically ill is a civil rights issue, and that Advocacy for Patients with Chronic Illness is a civil rights organization. Indeed, I have the following quotation taped to the top of my computer monitor: "Of all the forms of inequality, injustice in health care is the most shocking and inhumane." Rev. Dr. Martin Luther King, Jr.
Although I've given this talk before, never has it been so appreciated as it was by the members of the HFA. They interrupted me several times with applause, and when I got to the end, I just couldn't stop with words. And so we sang. We Shall Overcome! Five-hundred people in a hotel ballroom singing We Shall Overcome! I still get goose-bumps at the thought.
I'm so fortunate to have the opportunity to speak to patients all over the country. Every time I do, I learn something new, I meet people who "get it" about chronic illness, and I feel gratified that my work touches so many people. But never have I enjoyed an audience more than this one.
I have to tell you -- whether you have a bleeding disorder or not, this is a really fun group of people to hang out with. They are fired up, not taking it lying down, and ready to rumble and rock. So check out their website, and next time you're looking for a group to collaborate with, think about the HFA. I promise, if nothing else, you'll have a wonderful 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
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.
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 Public Health Committe, it likely will be assigned to other committees for review and possibly further hearings before it receives a full vote.
The Connecticut Restroom Access Act, RB 6328, was unanimously approved by the Public Health Committee. Next stop is a full floor vote.
There's still a fight to be fought over retaining prescription drug coverage for low-income elderly and disableds, though. Currently, the State pays for prescription drugs that Medicare Part D plans refuse to cover, but as of the date of this writing, the budget on the table would eliminate this "wrap-around," and would charge low-income recipients of Medicare and Medicaid prescription drug co-pays. Both of these will make it harder for folks to get their medications.
If you are with me in wanting universal health care and/or needing a bathroom NOW, and/or you want to see the prescription drug cuts restored, please contact your State Senator or Representative and ask them to make sure that this bill gets the full vote that it deserves.
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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Please visit our new blog. Think about subscribing so you get a notice every time we post and then you can post your comments, as well.
And check out the changes to our website. We've updated the content and added lots of new links to help you find the resources you need. |
And the Winner is .....
Last month, we invited you to tell us how you would improve the lives of people with chronic illnesses if you could change the world, and promised to pick a winner for best ideas. And the winner is Shelley Echtle from Forney, TX! Shelley sent us three great ideas:
1. Have a temp service where employers could list jobs that need to be done, and people could submit their resumes and days they could work. Flat rate, contractor pay. If they were flaring, they wouldn't worry about it. Employers could also assign out work, and let employees work from home. A temp service without the cost of temp companies.
2. People that have drugs then can not use them (from allergic reactions) could send them to a company. The company could fill requests for needed drugs, with an approved prescription, and not pay for more than postage to receive them.
3. A home for the disabled, where there was a full staff and services available: masseuse, water therapy, counseling sessions, different modalities for the hurting, Maid service, laundry done for them, a cook for meals, transportation services, etc. It would allow the disabled to live in a community and have basic needs taken care of. Members would then work together to help one another. Even the suites would have sleeper sofas for friends to visit. Oh, how I wish this dream would come true, in my life time.
Congratulations, Shelley! A brand spanking new copy of the Know Your Rights Handbook is on its way to you!
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Jennifer C. Jaff, Esq.
Executive Director
Advocacy for Patients with Chronic Illness, Inc.
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