AARP Eye Center
Jennifer Jaff: A Tireless Advocate for Patient Rights
By Patrick Kiger, September 25, 2012 07:35 AM
Jennifer Jaff was a bigger fan of the alternative rock band Pearl Jam than she was of Friedrich Nietzsche. All the same, she proved that the German's philosopher's stock aphorism, "That which does not kill us makes us stronger," is more than a cliché.
In 1975, when she was a 19-year-old college student, Jaff was diagnosed with Crohn's disease, an autoimmune disorder in which the patient's body attacks itself, causing painful and debilitating chronic inflammation of the gastrointestinal tract. It didn't stop her from earning a degree from Georgetown University's law school, or from fighting health care fraud and advocating for consumers during six years in the Connecticut attorney general's office. But in 2002, the disease she had lived with for decades suddenly escalated, leaving her in severe pain and unable to work. As she later wrote in an autobiographical essay for a patient advocacy website:
[T]he situation was allowed - by doctors who were supposed to know what they were talking about - to rage on for many months. By the time I got to a true expert, my kidneys were shutting down and I had no strength left. Several surgeries followed, extending my period of acute illness to nearly five years. In the midst of all of that, I realized that my life as a high-powered trial lawyer was over. If I couldn't predict whether I would be able to leave my house on any given day, I [couldn't] travel or appear in court on a regular basis.
No one would have blamed Jaff, who died in Connecticut on Sept. 14 at age 55, if she'd spent her remaining years sitting quietly or tending her plants. But instead, she got on the Internet and looked for someone else she could help. She found that other chronically ill patients were fighting with insurance companies to get care and struggling to navigate the bewildering maze of laws, including the Americans with Disabilities Act and the Family and Medical Leave Act, which promised to protect their rights.
Jaff began answering others' legal questions, and she eventually wrote a handbook, Know Your Rights: A Handbook on the Law for Patients with Chronic Illness, that gave tips on everything from how to get a reprieve on overdue rent to persuading an unfriendly doctor's office receptionist to let you use the bathroom. She went on to found Advocacy for Patients with Chronic Illness, a nonprofit organization that counsels chronic-illness patients on things such as how to obtain legally required accommodations at schools and apply for Social Security disability benefits, and goes to court to fight for their rights.
Jaff also wrote a friend-of-the-court brief in support of the 2010 Patient Protection and Affordable Care Act, which may have helped the new law to withstand a constitutional challenge in the Supreme Court in June. "In my estimation this is the most important civil rights advance for people with chronic illnesses ever," she explained. "There can never be equality if we can't get health insurance."
In her work as a disability advocate, Jaff acquired a famous ally: Pearl Jam lead guitarist Mike McCready, who also had Crohn's disease, and who became a financial backer of her organization. Here's a clip of the band inviting Jaff onstage for a shout-out during a concert in Hartford, Conn.