June 19, 2012
Before you came here this morning, you gave a talk at St. Luke's-Roosevelt Hospital Center. What was it about?
I covered the Berlin patient story: what things we already know from the results; what is unclear and what is not detected; what are the consequences of the case; and how we can go on with this approach.
How many of these talks have you given over the past few years?
[Laughs] Oh, many. I like the idea of promoting the CCR5 story. Many people have heard of it, or read. But I think there are some details which are still [not known] for many people who didn't read it very carefully and have [ideas] of this case which are not quite true. So it's probably good to remember, then, what are the facts, and what can we learn from this case.
In addition to not knowing the details of the Berlin patient case, you mentioned earlier that some medical instiutions don't think to test allogenic transplant donors to see if they have the CCR5 deletion. Is that one of the reasons that you've been speaking -- to try to increase that level of education and communication?
Yeah. I want to promote the fact that we can do this testing for free [at our institution]. Someone will say, "Oh, no. Don't do this testing; it will cost us too much."
I say, "No. It doesn't cost anything. I will cover all the costs." But they are always unsatisfied. Some say, "Yeah, we have such a patient. But we want to do this testing alone. We don't need your help."
They have made, here in the U.S., a trial for patients where they specifically look for CCR5-deleted cells, and for a few patients with leukemia and so on. It's an NIH [U.S. National Institutes of Health] trial. And all of [the people involved in] this study hadn't made contact with me. I found out about it from their presentation at CROI that they started it.
So you just hope that you make the connections and that ultimately it will start to come together.
I'm hoping for everything. I support every work which is in this direction. So, go on, if you have patients.
This transcript was edited for clarity. Special thanks to Terri Wilder, the director of HIV/AIDS education and training at the Center for Comprehensive Care at St. Luke's-Roosevelt Hospital Center, for arranging and facilitating this interview.
Check out our HIV Frontlines main page for more interviews with the men and women who work at the forefront of HIV prevention and care.
Myles Helfand is the editorial director of TheBody.com and TheBodyPRO.com. Follow Myles on Twitter: @MylesatTheBody