Beth Sufian is one of the oldest survivors of Cystic Fibrosis. As an attorney, the Houstonian has fought for the medical rights of thousands of patients — even from her own hospital bed — and travels the country teaching parents how to advocate for their children.
She took a few minutes to talk with Disruptive Women’s Wendy Grossman.
Q: You’ve dedicated your career to fighting for people living with CF.
Q: Can you tell me a little bit about your work?
A: Working with CF is about half of what I do — the other half is serious medical conditions.
Q: Like what?
A: I run a hotline for people with CF from all over the country to call and get information about health insurance and benefits and rights and employment. We’ve been in existence since 1998, and we’ve had about14,000 calls.
We have another project with CF, where we help people with their application for Social Security. We have 100 percent success rate to get benefits for people who can’t work or for their children. We’ve helped 139 people get coverage or government benefits who otherwise wouldn’t have benefits.
Q: Why did you start that project?
A: We had a lot of people calling the hotline who needed help. There are no attorneys that help people with their initial applications for benefits. Because you can’t get paid. And, usually, people don’t have the money to pay if they’re stopping work when they’re sick. We did a trial project funded by a drug company grant. We did 25 people and we successfully got all of them benefits. So we got more grant money to open up to people with CF. This past year, Social Security has gotten a million more applications for Social Security Disability benefits. Due to the economy, people with disabilities lose their jobs and can’t get other jobs. They’re trying to work.
We knew if the application went in with an attorney representing — which is rare — then the application might have a better chance of succeeding.
And then I represent lots of people with different disabilities. In those same areas insurance benefits, etc. And I do some work to try to make sure new drugs and new therapies coming out are covered with insurance.
Q: So you and your younger sister were both diagnosed with CF when you were 9?
A: Yeah. I was 9 and she was 7.
Q: How old are you now?
A: I’m 44. That’s old for CF. That’s really old. The average age of death last year was 25. Half the people were younger, and half were older.
Q: You’re a walking miracle.
A: Yup, I guess so.
Q: So what are you doing to stay alive? (Note, I’m ashamed I asked that. I apologized.)
A: To stay alive? I do a lot of treatments. Now there are medical treatments to better help manage the disease. It’s still difficult. We had a new drug approved last week called Cayston, it’s an inhaled antibiotic. And I’ve been on the study for about three years. And I testified at the FDA hearing. When the company appealed, I testified on December 10th why it was so important for people with CF. It got formally approved last week. Monday was the first day of last week.
Q: What do you like about that drug?
A: My lung function went from 50 to 80 percent. Which is unheard of. You can never get back that much lung function. It is much easier to breathe. I have less mucus on my lungs when I’m on it. Also, because I had less lung infection, I was able to gain about 15 pounds. Which I know most women don’t want to do – but with CF it’s hard to gain weight. And when you’re low weight, you get sicker. Right now I’m 118. And I’ve never been more than 105 pounds. Overall, my health is just dramatically better.
Q: That’s great.
A: I was really fighting hard. Otherwise, if it wouldn’t have been approved we would have to wait another two years to do another study. That was not acceptable. It was very frustrating we had 18 months from when it was denied to when it was finally approved. We don’t have that many drugs. We have three, FDA-approved drugs total. And it’s such a serious disease. It seemed clear that we needed to have this and not wait another two years. It’s been a good week.
Q: I read that when you were first diagnosed the doctor told you not tell anyone, because you’d lose your health insurance.
A: Correct. He told my parents that.
A: Then there was no HIPPA laws – there wasn’t a law saying they can’t cancel you. Back then it was, 1975 and they could cancel your policy for whatever reason they wanted. That was true. He was right. Although it was difficult.
Q: What did you do? How did you get treatment if you didn’t tell people?
A: There wasn’t any treatment to get. So we were going to the doctor maybe every four months for him to listen to us. But he didn’t have any medicine to give us. There wasn’t any approved drugs for CF then. And life expectancy was 10.
Q: Tell me about how you started your practice. I read a doctor asked you to help a patient after you graduated law school? And then another, and then another?