Lawyer Beth Sufian, 41, and her husband James are the loving parents of 6-year-old Isabella. Together, they advocate on behalf of people living with CF.
Every day, a new card or letter appears in Beth Sufian’s mailbox. “Every time we go to the store to get my daughter's medicine, we remember you…You have been an angel to our family,” one reads. “Your name comes up time and again whenever the injustices of the world fall upon those who battle CF. You are truly a hero,” writes another.
“Some of the people that send me these cards don’t have that much money. A $3 card is a very significant thing for them,” Sufian notes, her voice breaking. “These cards, they’re very special.”
For the past 17 years, Sufian, age 41, has dedicated her life to giving a voice to people struggling to meet the financial demands of living with cystic fibrosis. It is a situation she knows all too well. At age nine, both she and one of her younger sisters were diagnosed with CF. “We didn’t tell anyone we had CF because the doctor said we would lose our insurance,” she recalled. “At that time [in the 1970s], there were no laws to protect people from [healthcare] discrimination.”
Keeping her disease under wraps was hard. Both sisters displayed classic CF symptoms. “We coughed all the time. It was hard to breathe. We were very thin,” she recalled. “When I was younger, CF was a very different disease than it is today. There were very few medications.”
Even without treatments in her early years, Sufian considers herself lucky. She was not hospitalized until she was 23. As new therapies became available, she added them to her daily routine, helping her stay healthy enough to earn her bachelor’s degree from Emory University and a law degree from the University of Texas in 1990.
Following law school, she was asked by a CF doctor to help one of his patients obtain benefits. “I took the case pro bono and figured out how to get the child benefits. Then the doctor had another patient for me to help,” she said. “I started to realized that people didn’t have anywhere to go for help and that often meant that they didn’t get the medication that could make a real difference in their health.”
To ensure that people would have a place to turn to for help, Sufian opened her own law firm in 1994. Today, she and her husband James manage Sufian & Passamano, specializing in securing Social Security and better insurance coverage for people with CF and other disabilities, as well as representing physicians and hospitals in legal issues related to coverage for care.
“I want people to know that they can advocate for themselves. There are people here to help. They are not alone,” said Sufian. “There should never be a reason why someone doesn’t have the necessary medication to treat cystic fibrosis.”
Four years after opening her law firm, Sufian started the CF Legal Information Hotline, which has served more than 8,000 people to date.
“It’s great that some people with CF have full-time jobs or even take part in Ironman competitions, but there’s still a lot of people who are struggling every day to breathe, struggling to make ends meet. I don’t want to forget about those people.”
Sufian recalls one client, a 15-year-old girl who, in 1997, was so sick because Colorado’s Medicaid would not cover her primary CF treatments. While she won her case against the state, Sufian was unsure whether the teen would live much longer. “Last month, she e-mailed me to say she was getting married.”
This woman joins a growing list of thousands of people whose life has changed because of Sufian’s work. “Doing this job is hard, but it gives me strength,” she said. “There are two main reasons I think I am still here. One is to be a mother to my daughter. The other is to help others with CF. I have definitely found my calling.”
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