Our Story

Advocacy for Patients with Chronic Illness was founded in March 2005, by attorney Jennifer C. Jaff. After more than 30 years of living with chronic illness, pushing past pain and fatigue, building a successful career as a trial lawyer, in 2002, Jennifer’s Crohn’s disease finally got the best of her, and she realized that it was becoming increasingly difficult to get out of the house in the morning and make it to courtrooms. She was determined to finish the major litigation she had on her plate, working from home and from hospital rooms until she could figure out what to do next.

Disability?  Jenifer wasn’t ready to give in to illness, not yet, and for her, going on disability would have felt like giving in.  She knew she could still work if she could find something to do from home.  She began searching the internet for possibilities, and what she found was a community of patients with Crohn’s disease and ulcerative colitis who desperately needed help – the kind of help she could give from anywhere, with just a computer, phone, fax machine and mail.  She filed a disability retirement appeal – and won.  Then a disability insurance appeal – and another win.  Then, Jennifer realized that she was answering the same questions over and over, so she wrote the first version of what is now our Know Your Rights handbook, which is now in its Fourth Edition.

Now, almost six years later, we have a strong team of staff, volunteers, and student interns working with over 1500 patients per year.  We have made major inroads with insurance companies, winning more than 80% of the insurance appeals we file. For example:

And when we could not get insurance coverage, we pulled a few rabbits out of our hat, convincing one manufacturer of IV pumps to donate a light-weight pump for a patient to carry up and down stairs, and another to donate a special vest for a child with life-threatening pulmonary diseases. 

In addition, we have negotiated reasonable accommodations in work and at school, helped patients assert their rights under the Family and Medical Leave Act, and helped people to find resources – insurance, free medication, housing, and so on.  Our template section 504 plan for kids with inflammatory bowel disease is being used all over the United States. 

We also have done some public policy work.  In addition to our website, we have a blog and a monthly e-newsletter through which we have tried to keep consumers informed about health reform, and we have been filing comments on regulations implementing reform from the unique perspective of patients with chronic illness.  We’ve published a book of stories of some of our clients to help policymakers understand what it’s like to live with chronic illness, as well as a video on living with chronic illness, all of which you can find on the page of this website that we dedicate to our public policy arm, the Chronicity project. 

We’ve even done some social science research.  With our partner, the University of Michigan Center for Managing Chronic Disease, we conducted a study funded by the National Institutes of Health examining the obstacles faced by the chronically ill and the strategies they used to surmount those obstacles.  Watch for our report soon.

We’ve done a lot so far, and will continue to do all we can to give people with chronic illnesses the tools they need to manage their disease, and a voice so that they can be heard. 

We hope you find what you need here, but if you don’t, please don’t hesitate to contact us at patient_advocate@sbcglobal.net or (860) 674-1370.

Welcome, from all of us at Advocacy for Patients with Chronic Illness, Inc.