Jennifer Jaff dies at 55; advocate for the chronically ill

Jennifer Jaff was on the brink of attending law school when her doctor tried to stop her because she had a debilitating chronic illness.

“I decided I couldn’t stay in bed the rest of my life,” she later said. “I had to live.”

Decades later she was a partner in a Connecticut law firm when the Crohn’s disease that she had been diagnosed with as a teenager finally got in the way of her work as a trial lawyer. She started looking around and “found all these patients who had questions and needed help,” she told the Hartford Courant last year.

In 2005, Jaff left the firm and became a leading national advocate for people like herself, founding Advocacy for Patients With Chronic Illness, an organization that she ran from home. The tiny nonprofit has helped secure and improve benefits for thousands.

Jaff, 55, died at her home in Farmington, Conn., on Sept. 14 from complications of Crohn’s disease, an incurable gastrointestinal disorder, said her brother, Dr. Michael Jaff, a vascular medicine specialist.

“She gave 100% to everything and everyone,” said Mike McCready, a guitarist with the rock band Pearl Jam who has Crohn’s disease and who helps financially support her organization.

“She believed that access to affordable and quality healthcare for everyone was one of the greatest civil rights issues of our time,” McCready wrote in a tribute on his band’s website. “She LITERALLY saved people’s lives. Regularly.”

When people both in and out of government talk about disabilities, Jaff told the Hartford Courant in 2011, “they’re not fully appreciating the experience of people with largely invisible disabilities, mostly chronic illnesses.”

Her organization provides free advice and advocacy in such areas as health and disability insurance, Social Security, job discrimination and educational equity. It helps more than 1,500 people a year and says it wins more than 80% of the insurance appeals it files. The group plans to continue.

The fundraising piece of running a nonprofit was “challenging and I hate it,” Jaff once said. To help raise money, she wrote “Know Your Rights: A Handbook for Patients with Chronic Illness” and sold copies for $30 through the group’s website.

The handbook addresses such topics as obtaining Social Security disability income and insurance coverage for specific treatments. It also covers less obvious territory, such as how to get a reprieve on overdue rent or persuade an unfriendly receptionist at a doctor’s office to grant access to the bathroom.

She co-wrote a “friend of the court” brief in National Federation of Independent Business et al vs. Sebelius, the case in which the Supreme Court upheld President Obama’s Affordable Care Act. Jaff argued in support of a provision in the law that prohibits insurers from discriminating against people with preexisting conditions.

In celebrating the ruling, Jaff said in a July Hartford Courant article: “In my estimation, this is the most important civil rights advance for people with chronic illnesses ever. There can never be equality if we can’t get health insurance.”

Jennifer Chett Jaff was born June 12, 1957, in New Hyde Park, N.Y., to Alvin and Susan Britt Jaff. Her father owned and ran an architectural woodwork design factory and her mother was a teacher.

When Jaff was in her teens, physicians struggled to figure out her illness, which was finally diagnosed when she was 19. Over the years, she underwent multiple operations because of the disease.

After receiving a bachelor’s degree from Queens College of the City University of New York, Jaff earned her law degree in 1984 from Georgetown University.

For five years in the 1990s, she worked in the Connecticut attorney general’s office, where she created a health insurance consumer-advocacy program.

She was a partner at a Washington, D.C., law firm when her Crohn’s relapsed, and she decided to try to slow down by returning to Connecticut. Her last job as a lawyer before advocacy became her full-time focus was as a partner at Killian & Donohue in Hartford.

The same ailments would have shut other people down, Robert Killian Jr., a partner in the firm, told the Hartford Courant in 2005. “Jennifer at half speed,” he said, “is worth most people full throttle.”

Jaff is survived by her father and her brother.

valerie.nelson@latimes.com