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Despite the boy’s demeanor, his doctors say they don’t sugarcoat the dangers.
“It’s a rough road,” says Verneris. The transplant is riskier than most types of heart or brain surgery, he said; one in five die from the procedure. The recovery can be brutal, too, leaving patients sick and fragile for months.
“When I tell a parent that,” says Verneris, “if they’re not crying at the end of the discussion, they didn’t hear me.”
Without a transplant, though, the boy’s odds are even worse, he said. Because this particular procedure is experimental, the university got approval from the Food and Drug Administration to try it.
Last week, the boy had chemotherapy and radiation to destroy his immune system and, hopefully, the cancer and HIV infection at the same time. On Tuesday, he’s scheduled to receive an infusion of cord blood cells, which should replace his own immune system. Doctors made sure that the new cells, from a newborn’s umbilical cord, had the rare genetic mutation that resists HIV.
After the transplant, he’ll be in isolation at the hospital, and won’t be able to go home for at least 100 days, Verneris said.
While checking for signs that the leukemia is gone, his doctors plan to keep him on anti-AIDS drugs — for awhile. At some point, says Schacker, “we’ll stop the [HIV] drugs and, on pins and needles, wait to see if the virus comes back.”
No one suggests this kind of transplant is the cure for HIV, Wagner said. But if it works, it will be a “proof of concept” that could lead to simpler, less toxic ways of curing the infection.
Bill Tiedemann, executive director of the Minnesota AIDS Project, cautions that the research is still in its early stages. But he calls the university’s work “an incredible opportunity.” The hope, he said, is that it will serve as “a steppingstone” to more research, “and that we will eventually reach what we all want, which is a cure for HIV.”
For Timothy Brown — the Berlin patient — it’s noteworthy that scientists are even talking about a cure. Just last month, doctors reported that a Mississippi baby girl was cured of HIV through intensive treatment after birth. And Brown has launched his own foundation to promote the cause. “Since my case came out in the news, people are now talking about it, and medical researchers are looking for a cure,” he said. If Tuesday’s procedure is a success, he added, “it would give people a lot of hope.”
In the meantime, Brown said he plans to reach out to the boy’s family. “I’m very hopeful that he will get through this very well.”
The boy’s physicians are cautiously optimistic. “We really are kind of going into the unknown,” says Verneris, “with eyes wide open.”
Maura Lerner • 612-673-7384