Thursday, December 18, 2008

Advocacy for Patients with Chronic Illness

Yesterday, someone emailed me to tell me that they were listing this blog as a resource for patients with Crohn's disease -- but they didn't list Advocacy for Patients with Chronic Illness itself as a resource. Since I suspect the work we do is a far greater resource than anything I write on this blog, and since I haven't talked much about what we do since moving this blog to this location, I thought I would introduce us.

I founded Advocacy for Patients when I was too sick to leave the house, and I realized that my days as a traveling trial lawyer were over. I went onto to the internet to look for resources and ideas for myself, and what I found was a community of patients who were desperate for information. I started answering questions about health and disability insurance, Social Security disability, the Americans with Disabilities Act as applied to work and school -- a whole host of issues confronting the chronically ill. Once I realized I was answering the same questions over and over again, I wrote the first edition of what is now our Know Your Rights Handbook, which is now in its fourth edition.

Then someone I know was denied long-term disability and asked me if I would appeal for them. Then someone else was denied disability retirement. Slowly but surely, I had a new job. Then, of course, came the realization that I would need to be paid some day and I couldn't charge these patients, so I incorporated us and went through the process to get a tax exemption so that we could apply for grants and accept tax deductible donations.

Fundraising has been a far greater challenge than I thought it would be. How many senior attorneys give up a partnership in a law firm to provide free services to sick people, occasionally even saving a life? It turns out that, as a general rule, large funders don't want to fund an organization that reaches only 1000 patients a year. To me, 1000 patients a year sounds like a lot, but that's because I place great value on the cases we do that take 50 hours and span a period of months, whereas larger funders are prepared to fund less intensive work that reaches more people. So we are almost entirely dependent on donations, along with some small grants from the Connecticut Health Foundation, the Universal Healthcare Foundation of Connecticut, and Get Your Guts In Gear.

But the funding that put us over the top and allowed me to stop doing paying legal work on the side came from Mike McCready, lead guitarist of Pearl Jam, and his wife Ashley O'Connor. Mike has Crohn's disease, as do I. We met through Gloria Steinem, believe it or not -- Ashley mentioned that Mike has Crohn's and Gloria pointed them in my direction, as she is wont to do, being the world's best networker ever. While I was struggling to get Advocacy for Patients off the ground, Pearl Jam played Hartford, Connecticut (where we are located), and donated $1 per every ticket sold to Advocacy for Patients. Mike and Ashley founded Advocacy for Patients every bit as much as I did, and they continue to be great supporters, and have become treasured friends.

This March, we will celebrate our fourth anniversary. It's hard to believe that it's been that long. We now have a very hardworking Board of Directors, and we do a lot of work with the Crohn's & Colitis Foundation of America, the United Ostomy Associations of America, the National MS Society, and other specific disease organizations.

Now, we help a lot of people find health insurance despite pre-existing conditions, and we do health and disability insurance appeals. We answer questions about Social Security disability and help people strategize. We assist patients to enforce their rights under the Americans with Disabilities Act, the Family & Medical Leave Act, Section 504 of the Rehabilitation Act, and other state and federal laws that help people with chronic illnesses obtain reasonable accommodations in work and school. And we constantly help people find resources despite a shrinking safety net.

In addition, as seems only natural, we do some public policy work. How could I listen to tragic stories day in and day out and not be involved in discussions of healthcare reform and, in particular, chronic illness management? This is especially true when I hear talk about managing patients as opposed to managing diseases, and I know we don't need to be managed. The whole notion that we want more health care than we need is absolutely nuts. As a chronically ill person myself, let me assure you that, if I could go a year without seeing any doctors other than my brother, I would be very happy, indeed! When we fight with a health insurer for coverage of a treatment, it's because we need it, not because we want it. And somebody needs to be saying that. It seems that somebody is me.

So that's the scoop on Advocacy for Patients. If you are reading this and have a few bucks to spare, we'd greatly appreciate tax deductible donations. If you are reading this and need our help, we're easy to find -- you can email me at And if you're feeling alone, don't. We're here and it looks like we're not going anywhere, so you never have to feel alone again. Jennifer

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