Last week, doctors in Minnesota performed a first-ever procedure on a young boy that could lead to finding a cure for both HIV and leukemia. This case is similar to that of Timothy Ray Brown (also known as “the Berlin Patient”), a founder of our organizations, the Timothy Ray Brown Foundation and the World AIDS Institute. If successful, it will be the first time a person has been cured of HIV as a direct result of an umbilical cord blood transplant.
Both procedures used blood cells from a human donor with CCR5 Delta 32 negative, a genetic deformity; persons born with the abnormality are naturally resistant to HIV. Timothy’s procedure, which was performed in Berlin, used stem cells instead of umbilical cord cells.
Fortunately, the German health care system supports access to multiple matches of CCR5 Delta 32 negative stem cell donors. In the case of the Minnesota child, because no CCR5 Delta 32 negative stem cell procedure has yet to be tried in the United States, the medical team used an umbilical cord blood match.
An hour before the boy’s cord blood transplant procedure, Timothy and I had an emotional discussion with Dr. John Wagner, head of the medical team at the University of Minnesota medical center. Dr. Wagner and Timothy discussed the differences and similarities in the procedures, as well as a sad truth: In the United States, doctors face near-insurmountable barriers to obtaining Food and Drug Administration clearance for such groundbreaking procedures.
The use of umbilical cord blood is still controversial in this country, with most of the opposition fueled by politics and religion. Today, Dr. Wagner told us, there is a very small amount of umbilical cord blood being released or available for medical procedures such as the one performed last week. His team was permitted access to only a small fraction of cord blood.
What if cord blood were more readily available? Consider the immediate and long-term impact on all sorts of diseases, beyond leukemia and HIV.
An hour after the procedure was completed, Timothy called the young boy to wish him all the success in the world for a good and speedy recovery. “When I had my procedure done, I got caught up in the trap of lying around in my bed in the hospital watching television and not exercising,” Timothy told the boy. “Make sure as soon as you are able, get out of bed and do some exercise, go do what you love, go play some basketball.” Timothy said he could hear the boy’s mother and team of doctors laughing, as they seconded the sound strategy.
Timothy’s procedure has been performed on others in Germany, but none has survived. “It became almost too much,” Timothy said. “I would receive one phone call after another letting me know another patient who received the same procedure I did had passed away.” In many cases, the leukemia and HIV was just too much for their frail bodies. In all cases, there were multiple stem cell donors available for each patient. But that was in Germany, not here.”
It is unfortunate the United States puts political and religious beliefs over potential life-saving scientific and medical discoveries. We have so much to be proud of in our country as it relates to science and medicine and also much cause for shame. In the case of the boy in Minnesota and Timothy Ray Brown, both could have said no to the groundbreaking procedures. Instead, they said yes, giving a major push to finding a cure for HIV for everyone.
What is really quite beautiful is the impact of physical hardship on the human spirit — a man and a boy now share virtually the same experience medically, yet it’s also different. One received stem cells from an adult, the other umbilical cord blood from a baby. However in the end, it very well may be that Timothy Ray Brown, the first person ever cured of HIV, now will have more company. More importantly, he has a new friend and a potential new leader who might understand what it’s like to be cured of AIDS.