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Floyd says he's learning the system -- but "a lot of sickle cell patients do not fight," says Joan Wise, chairwoman of Floyd's sickle cell support group. "They just go along with the program, and they are treated badly because they don't know nothing about fighting."

"A lot of people are being denied treatments that could extend their lives," says Beth Sufian, a Houston attorney and cystic fibrosis patient who frequently defends people with disabling illnesses. Two new cystic fibrosis drugs -- Pulmozyme, which liquefies excess lung-clogging DNA, and an aerosol antibiotic called Tobi -- have become the standard of care for CF patients, but together they cost about $50,000 per year. HMOs sometimes refuse to pay for them; that's when Sufian steps up. "We can have the best drugs, but if there's nobody to pay for them, nobody's going to get them," says Sufian. The chronically ill survivor of an inherited disease is the nightmare of the insurance industry, she says: "Doctors try to tell the insurance companies that these drugs will save lives -- but the insurance companies in fact could really care less."

As difficult as their lives are, cystic fibrosis patients have some advantages. Almost exclusively white people, they have the well-run Cystic Fibrosis Foundation, started in 1955, working on their behalf. The foundation has attracted numerous well-heeled, well-connected sponsors (Bill Gates gave $20 million to the group last month; and the CF gene was first isolated in 1989 by Francis Collins, now head of the NIH's genome institute). By contrast, sickle cell patients lack resources and clout -- perhaps because AIDS and asthma, two other diseases that disproportionately affect poor African-Americans, have absorbed so much attention and money. Sickle cell disease "hasn't caught on for philanthropy," says a leading sickle cell doctor. "The white population looks at it as a disease of African-Americans and the African-American philanthropic community really hasn't championed it -- I don't understand why." Despite huge annual budget increases at NIH, the National Heart, Lung and Blood Institute's funding for sickle cell research has declined steadily since 1994, when it peaked at $47 million.

About 90 percent of American cystic fibrosis patients are treated in specialty clinics certified by experts in the disease; fewer than half of sickle cell patients are believed to enjoy such care. Whereas the Cystic Fibrosis Foundation has mandated that the clinics it funds and certifies each have at least one adult specialist by the end of 2000, there is no similar standard of care for sickle cell.

In fact, many specialty clinics are reeling under cutbacks. Dr. Elliott Vichinsky, a prominent specialist who cares for about 600 sickle cell patients at Children's Hospital in Oakland, Calif., estimates that fewer than 20 percent of the services he provides are reimbursed by insurers, about a third the level of a decade ago. "Managed care and chronic illness are a devastating combination," he says. "Managed care wants to cherry-pick out the sick patients, and with sickle cell you're dealing with a rare illness in a group with limited political clout and a shortage of physicians interested in treating it."

This observation is seconded by Dr. Oswaldo Castro, who heads the adult sickle cell clinic at Howard University, the largest in the Washington area, where Medicaid patients -- a large segment of the sickle cell community -- are now funneled into HMOs. "These patients require continuity of care by specialists. With the new gatekeeping paradigm, they have difficulty getting the follow-up visits. We're seeing fewer patients than before because they have more trouble getting referrals."

The industry responsible for the care of the chronically ill readily admits its failings. "The opportunity is there to establish personalized care for the chronically ill, but in too many locations the approach is to ratchet down payment to the doctors and providers who have the courage to take on these patients," says John Selstad, vice president of the National Chronic Care Consortium, which represents large health care companies that care for the chronically ill. "Those seeking to do a better job get penalized."

Because of their poor health, sickle cell patients frequently have trouble living independently as adults. That leads to depression. The social workers and family counselors available to kids aren't there for them as adults. "They must fend for themselves," says Vichinsky. "The majority become ER patients or get connected with a well-meaning doctor but they're unable to benefit from integrated services that can prevent deterioration." Vichinsky sees these patients after they've "been brutalized by the health care system." By then it's often too late. "Two out of three deaths in my adult population are preventable," he says.

Ivor Balin Pannell, a 35-year-old retired dancer in the Bronx, set up a patient advocacy group several years ago in reaction to his bitter experiences in emergency rooms. "When you're a baby with this kind of disease they fawn all over you; they say, 'Oh my goodness, this poor baby is in pain,'" he says. "That same baby comes in as an adult and they say, 'Look at this pain in the ass." Pannell was 25 when he found himself asking a skeptical nurse for a shot of Dilaudid one evening in the emergency room at Cornell Medical Center. "She told me, 'You're just trying to get drugs.' I was just stunned. But since then I can't tell you how many times I've been called a drug addict to my face." Patients who tire of such humiliations often try to medicate themselves at home, Pannell says. But it's a tricky business, and sometimes they die. "I must have known a dozen people that's happened to," he says.

Research has yielded improvements in sickle cell treatments, but they are slow to come on line -- and the disease's lack of political clout plays a role here, too. In the past few years, studies have come up with the first effective treatment for sickle cell symptoms -- a drug called hydroxyurea, which had been used to fight cancer. Bone marrow transplants have cured a handful of sickle cell patients, and cord blood transplants and fetal therapies have shown promise. NIH-sponsored teams developed a tool helpful for stroke prevention, and the FDA is evaluating a new drug, Flocor, which seems to shorten pain crises by lubricating the slide of sickle cells through the blood vessels. But these new therapies require further testing and refinement, as well as ancillary tests and treatment, and they are seldom reimbursed. So they aren't widely used.

"The problem with all these treatments is availability," says Dr. Lewis Hsu, co-director of pediatric sickle cell at Georgia Comprehensive Sickle Cell Center in Atlanta. There aren't enough doctors around the country interested enough, or well-funded enough, which sometimes amounts to the same thing, to test them out. "We're a pretty well-funded center," says Hsu, "and yet we've had to turn down some drug studies for lack of personnel. We have data that's just sitting there because we can't get the time to put it out."

Adults, who now make up more than half the nation's sickle cell patients, are particularly underrepresented in research on new treatment. "This is a large population, whose care we have really studied very little," says Marilyn Telen, who directs the joint Duke-University of North Carolina sickle cell clinic in Durham, N.C. Adds Vichinsky: "These are really the orphans of managed care."
salon.com | Dec. 15, 1999

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