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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!
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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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'Tis the Season
I've tried to be upbeat in our monthly newsletters, and a lot of you have written to me to say how much you've appreciated that. However, things aren't always rosey, especially in the lives of the chronically ill.
Now that we are officially into the holiday season, at the risk of being negative, I want to tell you a couple of stories that I hope will make you want to join me in demanding CHANGE in the New Year.
First, baby John. John has some form of inflammatory bowel disease. Because he's only 14 months old, the doctors can't be sure if it's Crohn's disease or a form of colitis. Either way, he's being treated at the Children's Hospital of Philadelphia (CHOP), one of the best pediatric IBD centers in the world. He's tried steroids and immunomodulators, mesalamine and IV feeding -- even naso-gastric feeding -- and he's still a very sick little boy.
The doctors at CHOP all got together to discuss his case. They brought in the immunologists, too. They thought long and hard, and then made a decision. But the decision wasn't theirs to make; the insurance company said no. This is a BABY in PAIN and they said no.
Then there's Mary. Mary's in her early 30's and is suffering from a serious neurological illness that has progressed from a little tingling to partial paralysis in only three months. She's tried the first two standard therapies. So far, nothing has worked, and her disease is progressing so quickly that it has her very afraid. Her doctor has a third option for her. There's medical literature to support it. But her insurance company says no.
I'll appeal these denials, and hopefully I'll win one or even both of them, but that's not my point. What is it that makes people who work in positions of power make decisions that they know will be hurtful to others? Especially during the holiday season, where is the charity in the heart of the decisionmakers?
A couple of months ago, I told you about Martin Berardi of Moog, Inc., who donated two infusion pumps to a patient in desperate need. The Martin Berardi's of the world deserve to be in the spotlight, but so do the Grinches who say no to people who need medicine, the Scrooges in government who cut back on services for the disabled during hard times, the misers who take home huge bonuses and never think about donating some of it to charity.
The feel-good stories need to be told, for sure. But we can't forget that they're few and far between. For every one exceptional person I run across, there are ten -- maybe 100 -- who need to learn the gift of charity.
Because those of us who do spend our lives giving know that life is far more rewarding when you give than when you just receive. |
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The Chronicity Project
This is the space in this newsletter where we talk about health care policy affecting the chronically ill.
This month, I want to feature our new blog. We started on Revolution Health, but they've been sold and the landscape has changed there, so we decided to strike out on our own. Think about subscribing so you get a notice every time we post.
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A good friend of mine asked me to come up with a short wish list for healthcare reform. It was kind of a fun exercise. Here's my list. What did I miss?
1. Ensure that every American has healthcare that is universal, continuous (portable), affordable, sustainable, and accessible.
2. Eliminate pre-existing condition coverage exclusions and waiting periods in all health insurance plans.
3. Eliminate lifetime caps on health insurance benefits.
4. Eliminate the two-year waiting period for Medicare coverage of patients deemed disabled by the Social Security Administration.
5. Eliminate gatekeepers, thereby ensuring access to specialists, including out-of-network specialists at nationally renowned centers of excellence (or create a national network and no gatekeepers).
6. Establish a patient-centered system of care coordination (medical home or other) for patients with chronic illnesses.
7. Establish a system of patient education and advocacy (i.e., patient navigation) to assist chronically ill patients to manage those aspects of their illnesses that go beyond the medical office, to work, school, and home.
8. Create financial supports - perhaps in the form of tax credits or deductions - for patients with chronic illnesses to mitigate the financial burden of their disease.
9. Fund, establish, and administer a system of electronic medical records and other health information technologies aimed at improving quality, reducing medical errors, increasing administrative efficiencies, and reducing costs.
10. Make it easier and faster for patients to obtain Social Security disability, and create a nationwide system of temporary disability for illnesses expected to last more than one month and less than a year. |
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Jennifer C. Jaff, Esq.
Executive Director
Advocacy for Patients with Chronic Illness, Inc.
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