Above & Beyond
Attorney Beth Sufian, who has CF, with her daughter Isabella.
It’s not unusual for attorney Beth Sufian to receive a phone call that begins, “I never thought I’d have to call you, but now I have a problem.”
Since 1998, Beth has run the CF Legal Information Hotline, providing free information to people with cystic fibrosis and their families on their rights to obtain health insurance, government benefits and protection in the workplace and school.
“Most people with CF have complicated situations, and the answers to their questions are not always straightforward,” says Beth, who was diagnosed with CF as a child. “I established the Hotline because there was no place where people could go to get correct information about their legal rights.”
Helping Patients, One Call at a Time
Sponsored by the CF Foundation, the Hotline is strictly an information resource and does not provide legal representation or advice. But with her deep knowledge of the spectrum of challenges the CF community confronts, Beth helps empower people with CF and their families to advocate for themselves and get the potentially lifesaving care they need.
Hotline assistance typically begins with an explanation of insurance options and questions about the type of coverage an individual needs. Depending on the situation, Beth then walks callers through government benefits programs, such as Medicaid or Social Security Disability Insurance, and the often intimidating maze of requirements for eligibility.
The Hotline has served more than 20,000 people since its founding more than a decade ago, and averaged about 100 calls per week last year.
Because of the weak economy, the number of people without health coverage is on the rise, and those numbers are growing dramatically. “In the past six months the calls have really been through the roof,” says Beth. “We have received 50 calls in one day.” Two other attorneys work on the Hotline, assisted by two paralegals, but Beth handles the bulk of calls herself.
A Growing Need
Lately, many calls concern coverage for people with CF who are aging out of their parents’ insurance plans, or who have a parent who is retiring or has been laid off and coverage is ending. More than half of children who have CF receive Medicaid benefits.
In one recent case, Beth helped the family of a 15- year-old with CF whose father had lost his job — and the family’s health insurance.
With the family’s changed circumstances, the teenager could have met the rules for eligibility.
But Medicaid has very strict limits on how much money a person or family can have in the bank and still qualify for assistance, and this family had just a little more than the allowed amount.
“Luckily, we were able to inform the family that if they could show they had spent their own money on medical expenses, their household income would be reduced by that amount and their child could be eligible for benefits,” says Beth. Armed with the right information, the parents were able to make the necessary changes and enroll their daughter in Medicaid, and she received the treatment she needed.
Beth and her team also receive calls from people who are having problems with their insurers or difficulty affording prescription medications. Beth refers those needing help with co-payments to the Cystic Fibrosis Patient Assistance Foundation (CFPAF), a nonprofit subsidiary of the CF Foundation.
“But even with assistance from the CFPAF, for some people, the out-of-pocket costs are just too high,” says Beth. “We then may look into whether the person can get government benefits. If people can’t afford their treatments, they may stop going to their care center.”
More Than a Community Resource
The Hotline is well known in the CF community as a lifeline for those needing help solving coverage and benefits problems, and Beth’s “can-do” attitude and bottomless energy are legendary.
When she’s not manning the phones, Beth devotes time to educating the CF community, traveling to CF care centers and speaking to health care providers about the laws affecting access to care. She also works closely with the CF Foundation to identify legal issues that are affecting more and more people in the CF community and possible action to address them.
“The CF Foundation sponsors the Hotline because it realized how important these issues are and saw there was an unmet need,” she says. “Most rare disease communities don’t have this type of resource — plus, it’s free.”
Married for 23 years with a 10-year-old daughter, Beth says her health is good: “I am very vigilant about doing treatments and very thankful to the CF Foundation for working so hard to develop new therapies to treat CF.”
Says Beth, “I have CF and I’m 46. There’s a reason I’m still here and this must be it — it’s my calling. I’m very passionate about making sure that people with CF get access to the care they need.”
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