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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). |
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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.
Advocacy for Patients Needs Your Help!
To keep providing these services for FREE, we need your help.
THANK YOU! |
Advocacy for Patients on the Move!
March 12-14: Keynote speaker, Hemophilia Federation of America, Indianapolis
April 4: Speaker at the Crohn's & 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! |
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NIH Study: We Need YOU! We are excited to report that, 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. Our first step will be to prepare and send out a mailing to you that will describe the study in more detail, tell you what would be involved if you were to participate, and tell you how to let us know that you are willing to help. THIS IS YOUR CHANCE to tell the NIH what your struggles are like. If you haven't done so already, please send your mailing address to: patient_advocate2@sbcglobal.net to ensure that you will receive this mailing and have a chance to participate in this important study. Thank you!
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HAPPY BIRTHDAY TO US!
Today is Advocacy for Patients' fourth birthday! Help us celebrate with a $10 donation -- or more. Use the "make a donation" button on the left.
And even if you can't afford a donation, think of us today, and all we've accomplished. We've worked with thousands of patients all over the country. We are doing health care reform as only we can, managing all of the non-medical aspects of chronic illness.
So take a minute today to say happy birthday to Advocacy for Patients. |
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If You Could Change the World ....
Those of you who know me know that I dream big. You'd have to be a little nuts to start a nonprofit when you're too sick to leave your house, and I still cling to the idea that some day, someone really important is going to ask me how I think things ought to be.
So I let myself think big.
What if we gave employers tax credits for every formerly disabled person they hired to work from home? In this day and age, it's no big deal to network computers in remote location. We can supervise and monitor employees who are working from home. And there are so many jobs that are done from a computer, telephone, fax, and mail. I'm not talking about creating busy work; these jobs already exist -- data entry, telephone call centers -- smarter people than I can fill in the blanks. But how many of you who are disabled wish you could work, and would work if you could work from home? Giving employers a tax credit is far less expensive than keeping someone on Social Security disability benefits -- especially when the person who used to be on disability starts earning money and paying taxes. This is a no-brainer, right?
And what if there were short-term disability, so you could take six months if you were flaring or needed surgery, and then go back to work? How many people hang onto Social Security disability at times when they might be able to work because it was so hard to get it the first time that they're afraid to let it go? What if short-term disability was easy to get, so you would know it was there when you'd need it in the future?
Those are a couple of things I've been thinking about.
Send us your ideas along with your mailing address. We'll publish our favorite in next month's newsletter. The winner gets a free copy of our Know Your Rights handbook! |
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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
Well, the stimulus passed, and although we didn't get everything we'd hoped for, we did get COBRA subsidies. Here's how it works. Everybody who was involuntarily terminated from their job from September 1, 2008 to December 31, 2009 is entitled to a 65% COBRA subsidy. If you're already on COBRA, your premium will be reduced effective March 1, 2009 (although you may have to make the full payment in March and April and then get reimbursed within 60 days). If you're not already on COBRA, you should be getting a new COBRA notice allowing you to start now. The subsidy is paid to the employer (or COBRA administrator, if your employer uses a COBRA administrator). This is a tremendously beneficial change that you should take advantage of if you're eligible.
Thanks to the Staff at Senator Chris Dodd's office and Dennis Apigo for helping me to nail down the details.
And now for the big news, health care reform. We don't know what it's going to look like yet, but at least some of the money it will take to pay for it is in the budget. We are SO excited!
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
There's too much going on to put it all here. But here's what we've been focused on:
- Elimination of coverage of prescription drugs not covered by Medicare Part D for people who also are on Medicaid -- we oppose this because we know people will just stop taking their medicine.
- Moving disabled people on Medicaid into managed care plans -- we oppose this because managed care costs more and covers less.
- Making all individual health insurance plans "guaranteed issue," which means they would cover pre-existing conditions under certain circumstances -- we support this strongly.
- And last but not at all least, Raised Bill 6600, the Universal Health Care Foundation of Connecticut's SustiNet proposal. What's got us jazzed up about this is section 6, chronic disease management. It would create a patient advisory board to help create and manage medical homes, which would coordinate care among specialists, help hook patients up with community resources, promote wellness -- and make a huge difference in our lives. We are THRILLED.
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 watch for changes on our website. We're so excited!
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Special Mention
Our great friend Jay Pacitti, founder of Get Your Guts in Gear (see square on the left) has received the prestigious "Hall of Fame" honor from Patient Power. See why here.
Congratulations, Jay! | |
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Jennifer C. Jaff, Esq.
Executive Director Advocacy for Patients with Chronic Illness, Inc.
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