Where Did the Doctor Go?
Almost exactly a year ago, my vivacious, energetic 3-year-old daughter was felled by a rare autoimmune disease. For weeks last spring, we puzzled over the rash that stretched across her face like a lacy red butterfly. Her low-grade fever was not particularly odd or debilitating, but nothing -- not the antibiotics, not the ibuprofen and Tylenol, not the hours in bed -- could overcome her lethargy.
Then one Saturday morning, Alissa couldn't bend down to pick up a toy. By noon, the stairs had become insurmountable. She couldn't stand up or rise from a chair. Within a week, she was virtually paralyzed as her immune system turned savagely on her muscles. She was beginning to have trouble swallowing, so we cut her food into tiny, soft bites.
"Daddy, I'm dead," she told me feebly from a Georgetown University hospital bed.
Our diagnosis -- and our primary doctor -- came from Georgetown, but as Alissa's descent and our own terror deepened, my wife and I pulled every string we could to get access to a preeminent expert on the disease whose name now trips off our tongues like a ditty: dermatomyositis. Lisa Rider, a pediatric rheumatologist at the National Institutes of Health, is a research scientist, not a clinician. So the only real patient access to her -- other than through prescribed research studies that rarely allow repeated visits -- was through Children's National Medical Center, where she saw a handful of sick children once a month or so as a visiting physician.
Consultations with her became like a talisman for us as we struggled to pull Alissa back from her pain and despair. Then, last month, they abruptly ended. Children's Hospital shut its rheumatology division, without warning and with little recourse, leaving 1,475 children who have arthritis, lupus, scleroderma, bursitis and other rheumatic diseases without a doctor. Overwhelmed by her workload and locked in a dispute with the hospital over bureaucratic changes, the hospital's only pediatric rheumatologist quit -- and with her departure, our window to NIH slammed shut. In a terse e-mail, Rider followed the hospital's orders and canceled our upcoming appointment, telling us that there would be no more.
The troubled story of rheumatology at Children's Hospital finds its roots in an American medical system that spins cookie-cutter procedures into gold while penalizing the specialists who deal with patients like my daughter -- tough cases that take time, thought, trial and error, lots of medicine but not much hardware. Under our system, the cardiac "cath jockey" who can slide dozens of catheters into arteries in a week or the ophthalmologist who flies through production-line cataract surgeries will always be living considerably larger than the physician puzzling over the debilitating aches in Alissa's legs.
The result is obvious. While ophthalmologists in Washington battle one another for patients, rheumatology patients battle one another for a doctor.
Losing access to Lisa Rider has left us more uncertain but not without care. But for hundreds and hundreds of other families -- some with children far sicker than ours -- the shuttering of the rheumatology clinic at Children's has been terrifying, as they scramble to find care that does not exist. Until this month, metropolitan Washington had all of three pediatric rheumatologists. But even that is overstating it. Bita Arabshahi, the physician at Inova Fairfax Hospital for Children, is relatively new and works part-time. Stephen Ray Mitchell, our primary doctor, is the dean of Georgetown's medical school, a job that severely constrains his patient list. Olcay Jones, who carried the real load for the city at Children's, is now gone.
Arabshahi is already being flooded with calls from desperate parents, whom she may or may not be able to squeeze in for appointments. And about 40 percent of the rheumatology patients at Children's are on the District's Medicaid program, which is not transferable to Virginia. For some, without transportation or cash, Fairfax may as well be Fairbanks.
The onset of a rheumatic disease such as dermatomyositis is horrifying. The disease may progress for months as pediatricians and dermatologists puzzle over the symptoms. Organ failure may follow, or even death. And the longer the delay in treatment, the more severe the long-term damage is likely to be.
Alissa was lucky. Diagnosis was quick. Frustrated by puzzled pediatricians and a dermatologist who saw only eczema, my wife took Alissa, as fate would have it, to Georgetown's emergency room, where a resident had miraculously seen dermatomyositis before.
Once treatment kicked in, Alissa's comeback was remarkable, if somewhat deceptive. Rheumatic patients may gain a lot of weight from steroid treatments, but they look pretty good. Their energy returns. Their strength builds back up. But the disease may smolder for years, stifled only by drugs that will hollow the bones, cloud the eyes and stunt growth.
Every morning when I give Alissa her clear, raspberry-flavored dose of steroid, I feel as though I'm poisoning her to keep the disease at bay. Her biweekly trips to Georgetown for walloping steroid infusions have frayed her veins and, at times, crushed her spirits.
But we have to have faith that she will get through it. There's no clear road map for treatment. Many children's illnesses can be controlled, but they're not cured. Care goes on and on and on.
Medical students weighing careers in orthopedic surgery against years of rheumatology fellowships, mountains of debt and a job on the lower end of the pay spectrum are making their decisions. There are only about 144 practicing board-certified pediatric rheumatologists in the country. Children's Hospital has vowed to hire two new pediatric rheumatologists to reopen the clinic as soon as possible, but 30 such posts are already open nationwide. We aren't holding our breath.
To make matters worse, the tumult at Children's is nothing new. Just three years ago, Patience White, the previous pediatric rheumatologist at the hospital, quit abruptly as well. Without doubt, the loss of two physicians in three years will not help Children's lure replacements.
Something is amiss at a pediatric hospital that's trying to establish a national reputation, in a metropolitan area awash in medical expertise. Indeed, there are plenty of pediatric rheumatologists in Washington -- two at the Food and Drug Administration, three at the National Institutes of Health and probably others in the government. They just don't see patients.
The ones who do are overwhelmed, like Olcay Jones. Her clinic at Children's may have been chaotic, with a little too much staff turnover, but physicians close to the practice say that it was in the black, an amazing accomplishment. But hospital management was determined to keep such a labor-intensive economic headache as small as possible. Jones was working 70 hours a week and was always on call. It was never enough. Finally she quit.
Washington's small rheumatology community is scrambling for short-term solutions. Mitchell, our doctor, is in talks with Jones to see if the whole Children's practice can move to Georgetown, where an adult rheumatology clinic is already packed. At the national level, Sens. Edward M. Kennedy (D-Mass.) and Christopher S. Bond (R-Mo.) introduced legislation in February that would expand federal support for pediatric rheumatology education grants and establish a loan-repayment program for physicians who choose the field.
It could help, but I'm skeptical. As long as insurance reimbursements are doled out like well-paid piece work, fields like rheumatology will depend on doctors entering the profession out of the goodness of their hearts. There will always be some of those, but how many? For Alissa -- stronger now, but not out of the woods -- and for us, it's a question tossed out like a prayer.
Jonathan Weisman is a Washington Post staff writer.