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What Can People Do to Accelerate the Research for a Cure?

It's all very exciting. What could people do to accelerate this research?

Support research. It is the only way we're ever going to have additional treatments and eventually a cure for this disease.

Stay knowledgeable about this disease. Don't let it fall off the radar map. Too many people think that since we have drug therapies that permit many people an almost normal lifespan, this is over and we can move on to the next cause. But it's really not like that. There are serious side effects of the drugs that we have.

If we haven't stopped this disease everywhere, then we've stopped it nowhere. It's really important to eventually cure it everywhere. It's very important to advocate for a vaccine because we've never ever stopped any viral epidemic through treatment alone. It's always required a vaccine. And vaccines are going to be incredibly difficult to develop in HIV.

So stay active. Make your friends and your legislators interested and aware of the fact that you're still interested.

amfAR provides grants to researchers to continue their research?

Right.

After the discovery of this patient, did amfAR's priorities change and shift? Is more money now being allocated towards finding a cure?

Finding a cure has always been a priority for amfAR; that is one of the reasons why this think tank was formulated. The impetus was the Berlin patient, but we've had several RFPs (requests for proposals) based on the cure for many, many, many years now. So this has supported the idea that finding a cure is an important mission for amfAR and it has fortified plans that we've already had in place to seek out more and more applications looking for ways to approach the cure.

I'm not one to speak about exact dollar amounts and so forth. It's a priority of amfAR's is the best way that I can put it. And amfAR is meant to mean cure. Whenever our chairman of the board, Kenneth Cole, gives a talk about what amfAR stands for, and what amfAR does, he says "amfAR is looking for a cure," and it's true.

Given the structural problems we have in the United States, why not just have a lab in Europe do this work, and have amfAR support that? Why not just go where we could do it easily?

amfAR supports research throughout the world. In fact, in terms of looking for ways to approach the cure, a significant fraction of the grants we gave out were in Europe and Australia. We are totally international in terms of who we fund.

But it's not the lab. It's the permission to get the patients in. Germany has a health care system that'll cover German residents, not someone in New York City. The world doesn't work that way.

You could ask the question, "If I were a person with HIV and acute leukemia, and I couldn't get my insurance to pay to find a match with the CCR5 mutation, should I move to Germany, find out what their residency requirements are and have my transplant there in an attempt for a cure? But that requires the luxury to do those kinds of things. People with leukemia alone, forget about HIV, are often quite ill. You put them in remission and then you're in a race to find an appropriate donor and to treat them.

The person in Berlin had the luxury of waiting. It took three months from the time that they did the computer screen that found the 232 probable matches, to the time they found patient number 61. If the patient hadn't been able to hang on for three months, then they may not have found patient number 61.

If you're sitting here in New York, and you're ill, you may not be capable of finding a doctor abroad, finding out what residency requirements there are, meeting those residency requirements, and waiting for them to find an appropriate donor while you hang on, hoping that your leukemia doesn't come back. That's not the way it's going to work.

If this is going to work in a system as rich as the United States, you have to go back to the discussions we had earlier. If this is a priority, then why not do a CCR5 test on the next person volunteering to donate his or her blood or bone marrow (maybe donors would even be interested in finding out whether they're one of the lucky few that have this mutation), and add that information to the registry? This way we don't have to worry about moving to Europe or waiting here, instead it'll be right there in the computer system, and I can access it from my desk the way we access tissue type, blood count and everything else.

So you're one meeting away from this potentially happening?

No.

[Laughs.]

I'm one meeting away from finding out what's happened since the last meeting where we discussed looking into uncovering what additional impediments are preventing us from finding a cure, and what we need to do to make the cure a reality. So if you call me in a couple of weeks, I'll give you an update.

Great. Thank you so much, Dr. Laurence. This has been incredibly enlightening. And thank you so much for your work in this area. I hope people listening to this will donate to amfAR and other places to help continue this very important work.

This transcript has been edited for clarity.

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References

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