The sign on the door to Beth Sufian’s hospital room read “The lawyer is IN.”

It was back in the mid-’90s, Sufian, a cystic fibrosis (CF) patient, was being hospitalized for two weeks to receive antibiotic intravenous drips to combat a respiratory infection. But word had spread that this CF patient was different. This CF patient was an attorney who advocated for the disabled. She had the knowledge and experience to advise physicians, hospital finance managers and, most of all, parents with desperately ill children.

So bewildered parents showed up at her door with questions: How can I get the insurance company to pay for the ventilator my child needs to breathe and to live? What should our doctors know about Medicaid and Medicare rules? How can the law help us get the right treatments for our patients?

Sufian was glad to help. She’d been helping since she was 13 when her mother put her to work filing papers at a legal aid center for battered women. But cystic fibrosis can be an exhausting disease and the number of people needing help seemingly endless. So she and her in-hospital clients reached a compromise: a sign on the hospital door giving office hours.

One set of parents tapped on the door after hours; they just couldn’t wait. Their insurance company had denied surgery for their child. Without it, the doctor’s prognosis was grim. Sufian decided it would be an easy case to take since her client’s doctors were right down the hall. After three days of negotiating with the insurance company from her own bed, the child’s surgery was approved.

A Lawyer Who’s Been There Fights for the Disabled

As a person with cystic fibrosis, Sufian, 38, has already outlived many of her contemporaries.

As a lawyer, she has dedicated her professional career to advocating for the rights of the disabled, navigating her way through the maze of insurance regulations and disability law.

She’s has been the recipient of many honors: a Time magazine “local hero” award in 1996, the Cystic Fibrosis Foundation Chairman’s Award in 2002, the Cystic Fibrosis Research Award in 1998 and the Unsung Heroines Award from her undergraduate alma mater, Emory University, for working with disabled people in the community.

She’s the former chair of the State Bar of Texas Disability Issues Committee and has served on the Cystic Fibrosis Foundation’s National Board of Trustees.

In 1997 she formed Sufian & Passamano with her husband, James Passamano. Formerly a senior trial attorney for the U.S. Equal Employment Opportunities Commission, Passamano brought two “firsts” to Texas: the Commission’s first successful Americans with Disabilities Act case and the first temporary injunction under the ADA.

The Houston firm focuses on health law, employment and employee benefits law, Social Security law and international law.

But how can you make a living advocating for people with disabilities? Even when their situation falls under ERISA or Social Security — which make provisions for award of attorneys fees to the plaintiff if he or she prevails — those fees can be difficult to collect.

Sufian explains that at least half the firm’s clients are entities that want to help the people she wants to help: employers who want to understand what to do for their disabled employees; and health care providers like doctors, hospitals and companies that make drugs and medical equipment. All these groups need help negotiating coverage issues with insurance companies.

But most important, she believes, is giving people the tools to advocate for themselves. Sufian & Passamano manages the Cystic Fibrosis Legal Information Hotline, which has received 4,500 calls since Sufian started it in 1998. They also speak to groups of attorneys, patients, families and health care providers. And they are the co-authors of two books: The Advocacy Manual: A Clinician’s Guide to the Legal Rights of People with Cystic Fibrosis for health care providers and Representing ADA Plaintiffs for attorneys.

What Does Cystic Fibrosis Mean to a Working Lawyer?

Sufian gets up two hours earlier than the rest of us to conduct the first of two daily treatment sessions that keep her alive.

Cystic fibrosis is a genetic disorder that affects the respiratory and digestive systems of approximately 30,000 Americans. A thousand or so new cases are diagnosed in the United States each year.

CF makes the mucus in the lungs and other organs exceedingly thicker than that of a healthy person. The buildup can make it difficult to breathe and can make the lungs susceptible to infection. After repeated and chronic lung infections, the lungs gradually lose their function, and the patient may need supplemental oxygen to survive. 

The thick mucus also accumulates in the pancreas, making it extremely difficult for a person with CF to absorb nutrients. This, Sufian says, leads to one of the pluses of CF: you can eat all you want without gaining weight. “It’s the only disease where the doctor tells you to eat cookies and cake.”

Sufian’s positive spin aside, children with CF often have what doctors call “failure to thrive.” They don’t put on sufficient weight and their growth can be stunted — which affects their overall health. People with CF take as many as 50 pills a day to help them absorb the nutrients in their food.

When Sufian was diagnosed at age 9 (29 years ago), the average life expectancy of a CF patient was age 10. Fortunately, no one told her that.

In those days, the only way to clear the lungs was by pummeling patients on the back and chest, so they could cough up the phlegm; and antibiotics had limited success defeating the repeated infections. In the last decade, people with CF have started living significantly longer and better lives, thanks to advances in antibiotics and other drugs that thin the mucus and help the patient breathe. The median life expectancy is now 32, and several hundred people are known to have lived past 50.

Here’s how CF affects one working lawyer’s day. Think of it as taking four hours a day to train for a marathon, every day of your life.

“Morning is difficult for people with CF,” says Sufian. “You’ve been asleep and the stuff has really built up in your lungs.” 

Instead of receiving her morning pick-me-up from a cup of coffee, Sufian puts the first of three medications in a nebulizer, attaches the nebulizer to an air compressor and begins to breathe medicine in. The drugs work to open her lungs and prevent bacteria from building up into infection. Sufian breathes the first medication for 15 minutes, the second for half an hour, the third for an hour. Then she puts on a device known as a vest, a mechanical aid that “shakes me up” — the equivalent of the old pummeling-on-the-back-and-chest routine.

And that’s it — except for occasional coughing during the day — until evening, when the routine starts all over again.

During these hours, Sufian does as much work as possible: reviewing case files, drafting motions and briefs, reading the New York Times and responding to e-mail messages sent to the CF Legal Information Hotline.

For some people with CF, each session takes only an hour. For some it’s longer, since they have to deal with buildup in the sinuses as well. Other CF patients (Sufian is not one of them) also have to deal with CF-related diabetes, liver problems, osteoporosis and arthritis.

Then it’s breakfast with the family. Grandma arrives to take care of their 3-year-old daughter, and the legal day begins.

Disability Is Becoming Every Person’s Issue 

Sufian serves on the CF Foundation’s task force that addresses the issues of adults with CF. There were no such issues a generation ago. There were so few adults living with CF.

As the population ages and as medical science is better able to save the lives of trauma patients and those with chronic illness, millions more of us will become disabled. Millions more will be sitting in wheelchairs, needing artificial help to breathe, taking expensive drugs.

Extending life expectancy is expensive, and CF is one of the most expensive of the chronic illnesses to treat. Drugs for the twice-a-day routine cost approximately $60,000 per year. And that’s only for health maintenance. Should the person with CF get an infection in spite of the regimen, these days the intravenous antibiotics can usually be administered at home for about $20-30,000. If the person requires hospitalization, a two-week stay runs from $60,000 and up.

Who pays? Who is responsible? Disability law is rapidly becoming critical to many families, not just some unfortunate few.

Attorneys, like the general population, often lack experience with the disabled, says Sufian, probably because they haven’t dealt with many cases. “Not a lot of disabled people have the strength and energy to find an attorney who knows about the law that protects people with disabilities. And few can understand how important the case is to the patient. So you don’t have a lot of attorneys representing the other side who understand what the rules really are. A lot of what we do is educate opposing counsel.”

That often includes educating attorneys who represent states about the demands of the Medicare and Medicaid laws. Those attorneys too often tell the states they do not have to pay certain medical bills when, in fact, they do.

She tells about a child on a respirator who had to be suctioned every half hour. His doctor had prescribed a piece of medical equipment that would save his life: “The attorney on the other side had no idea what a ventilator was, that it meant the child could not breathe on his own and that he was always at risk for severe respiratory infection. This piece of equipment wasn’t just some whim of his mother’s.”

The opposing attorney “came full circle,” and the case settled.

Sufian feels that attorneys sometimes underestimate their disabled clients, a pitfall that happens with other clients, such as women and racial minorities.

But possibly her greatest frustration with disability law is the misapplication of the Americans with Disabilities Act, and the accumulation of poor case law because the wrong people bring suit. 

“A lot of people who were never envisioned protected by the Act brought cases. As in any kind of law, when you have people who bring claims that aren’t good, it tarnishes the rights of people who do have good claims.”

She continues, “We find the ADA helpful for discrimination: simply because you have a disability, you’re fired or we’re never going to hire you. The law works in that respect. But when things are more nuanced than that — people need to take some time off from work or get a reasonable accommodation — it’s really hard for people to bring those cases in most parts of the country, which is really sad.”

So, more and more, Sufian & Passamano are focusing their efforts on helping employers do the right thing in the first place. They’re also bringing their expertise in health care, insurance and employment to mediation. Not only does it save all parties litigation costs, but “disabled people don’t have time to wait for a long, drawn-out suit.”

A Life That Gives Meaning

“Some people with CF would not want to have a life profession dealing with CF, but she does,” says Robert J. Beall, president and CEO of the Cystic Fibrosis Foundation. “She not only deals with her own CF 24 hours a day, but she’s also willing to take the burdens and problems that other patients with cystic fibrosis have and be an advocate for them. For us, she’s a great resource.”

What’s she like to work with? “She can be fun,” says Beall. “The first thing she wants to do when she walks in the room is show you a picture of her daughter. But when she’s advocating for patients, she’s tough as nails.”

Sufian’s not made of iron. She’s the first one to acknowledge she gets emotionally involved “when an insurance company has denied coverage that’s going to save a child’s life.” For support, she relies on family and friends (with CF and without), and sometimes she finds, “crying is good for me.”

But, she says, “I love CF because it’s brought a lot of wonderful people into my life. I also hate CF when it takes those people away or causes them suffering. CF has given me a lot of self-confidence, a lot of direction.”

She considers a positive approach her only option. “Being positive gives me strength. Being negative gets me nowhere.

“A lot of people I know with CF have passed away. Why am I allowed to stay here? Maybe it’s because I’m able to help people with the same disease. CF teaches you how precious life is.”