Beth Sufian Fights for Those Living with Cystic Fibrosis
April 7th, 2010
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.
A: Yes.
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.
Q: Why?
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?
A: He asked me to help one patient they couldn’t find anyone to help. And the kid wasn’t going to have any benefits. I said, ‘Okay, sure.’ Then I figured out how to do it. I won the case; I got the kids the benefits. And then the doctor said, ‘We have a lot of other patients that need help.’ I was working for somebody else, I was working a lot of hours. And I thought maybe I could have my own firm and help people with CF. And I had another doctor in New York, who had CF that I was seeing. And he was very instrumental in encouraging me to do that. He passed away in 1997. He was my driving force.
For attorneys, you’re very successful if you work for a big firm. And you’re kinda looked down on opening your own practice. I was ingrained with the idea. The doctor with CF that was my friend said, “That does not have to be the way. You can be very successful helping with people with CF.”
It took a while to build up this practice. I’ve been on my own in 1994. And my husband joined me in 1997. We’ve been doing it for a long time.
We have a lot of good support from the CF foundation. And we have a new hotline for people with hemophilia — bleeding disorders and that’s new and we got about 1,000 calls a year. We’ve branched out into that disability. They just have one medication, but it’s very expensive. They have some similar issues.
Q: So what other disruptive things that you’ve done? I saw that you worked on the ADA task force.
A: I did. And I’ve written a book on the ADA for plaintiffs for people with disabilities. But, unfortunately, there’s a lot of bad case law that’s against the employee. And that law has not been as helpful. Unfortunately, we don’t have any rights in employment. Even though there is this law.
Q: So what disruptive things are you going to do next?
A: I don’t know. Maybe I’ll take a little break.
Q: It sounds like it was fun for you when you helped get the new drug approved.
A: At the very end, I was the last person to testify. It was very stressful. I felt like I was the only person with CF that was going to speak, I was the only person who was on the drug who was going to speak. …I felt like I really had to make an impassioned plea. There were hundreds of people there, and it was hard to get up. I don’t usually get up and tell people, ‘This is how bad CF is.’ I had to do it. I had to say, ‘This is how sick I was. And this is how much better I am.’ I don’t usually talk about the how-sick-I-was part.
Q: I read that you’ve advocated for patients’ rights even from your hospital bed.
A: Yes, when I was hospitalized in the 1990s, people would know I was in. The doctors would come, the nurses, the parents. My doctor said you have to have office hours. And he made a sign that said, ‘The lawyer is in 12-2 and 4-6.’ He said there were too many people coming into my room. But there is nobody else who is helping these people. Even if you have the money, there’s not many attorneys. In Houston, there’s 18,000 lawyers, there’s 100 that do Social Security. Even for Social Security, you cannot find anyone who can tell you about insurance benefits and all the ins and outs. No attorney could make money. There’s no way. They wouldn’t have an incentive to learn how to do it – which is why we started this hotline. People were losing their insurance because they got bad advice from human resources or no advice. For CF it costs $12,000-$20,000 a month for maintenance medication. And for two weeks in the hospital — a low-priced IV drug is about $80,000. But most people it’s about $100,000.
Some people have to be in the hospital every four to 6 months. Or once a year. Since I’ve been on this drug I haven’t done it at all.
This is the wonder drug — at least for me. Hopefully for everyone else.
Q: Anything else you think is important?
A: I give speeches at hospitals once a month to parents about how to advocate. A lot of what we try to do is empower people to advocate for themselves. We obviously can’t represent 14,000 people and fly all over the country and advocate for them.
Q: Where do you do it? In Houston?
A: Last month I went to Knoxville to East Tennessee Children’s Hospital. About 70 percent of people are on Medicaid, they’re poor. Seventy people attended and they were so interested in advocating for their kids. People say people who are low income, they don’t care. But they were really interested in how to make their children’s lives better. They have a lot of trouble with schools saying, ‘Your kids cough too much, so you have to do home instruction.’ In college, I had a professor who told me that. But we hadn’t heard that recently. It was shocking to hear.
I tell parents, ‘Here’s how to advocate for your child at school. And this is the law.’ And tell the school this is federal law and they have to follow it. They have to.
Q: Where else do you speak?
A: Two weeks before that Birmingham, Al. at UAB. I’m speaking in Seattle in April and at Emory University in Atlanta in May.
The one last weekend was my 74th talk.
I feel like I’m so lucky I’ve lived this long. I’ve lost a lot of friends who weren’t so lucky. I’m here for a reason and this must be the reason — to help people. If I was not an attorney, and I needed help, I’d want an attorney with CF to help me. I keep that as my driving force.
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