The clock is ticking.

On Friday, I was in downtown Philadelphia with my colleague Jose Demarco talking to the staff and clients of a local AIDS organization; we have a town meeting this Thursday.  I was explaining the case of the Berlin Patient and the follow up research taking place. People were fascinated, and a small crowd gathered around me. 

One man said, "My partner has that, (the CCR5 deletion that helped cure the Berlin Patient), and we're always trying to enroll in cure studies, but no one seems to be interested." I said that we are going to be collecting a list of people who want to participate in cure research. 

Then I pointed out that many researchers don't realize that people with AIDS still need a cure, since there are effective treatments. The group fell silent. They were stunned--They could not believe that researchers didn't know that they desperately want a cure.  Then there was a flurry of conversation and people wanted to know how they can send a message to researchers that people with AIDS need a cure.

We talked about what it's like to have HIV, even if you have access to AIDS meds. You could have an AIDS-related heart attack, or get lethal liver cancer or AIDS-related lymphoma that your body can't fight off. I have lost friends this way. A lot of people seem to be developing cognitive problems, including dementia. You can get facial wasting, or wasting through your whole body, or a hump on the back of your neck that tells the world you have AIDS. People seem to slide ominously from youth to old age.

Picture these people in the hundreds of thousands.

But the US is only a sliver of the global AIDS epidemic:  We are home to about 1/33 of the people with HIV in the world.  Of the roughly six million people who urgently need AIDS drugs right now, only 20%-30% have access to medication. The others are dying. And we may be at a high water mark for access to AIDS treatment--wealthy countries are cutting funding for AIDS treatment for people in developing countries. Getting treatment will be a struggle for them for the next 50 years, if they are successful. But without treatment now, they won't live to see a cure.

When you think about AIDS cure research, remember this: The clock is ticking. For people with AIDS in the US. And for the millions and millions of people in developing countries who are dying just like it's 1989. We need a cure.

"You Only Need One Talking Dog to Know that a Dog Can Talk."- Jon Cohen

So the Kaiser Foundation made videos during the Vienna AIDS Conference--videos that apparently nobody is watching. This one is with Jon Cohen, the famous Science reporter who has been covering AIDS since at least 1990. On July 19, 2010, he talks about AIDS cure research starting at 5:02 minutes in (though the first part, about global AIDS funding, is interesting too). So far, only 8 people have viewed the thing, so maybe together we can spike that number.

I attended the basic science pre-conference that he describes, and that is what I have been blogging about (and I'm not finished yet). And we at the AIDS Policy Project are excited that the organizers are going to keep having those AIDS cure basic science conferences--a big step forward in the effort to find a cure.

We're a little more optimistic than he is about the prospects for a sterilizing cure (no HIV anywhere in your body) because of the example of the Berlin Patient. As Jon himself puts it, "You only need one talking dog to know that a dog can talk."  

Our strongly held view is that researchers shouldn't start out trying to find a cheap cure; that they shouldn't tie one hand behind their backs. They should develop any safe and effective cure, first. If it turns out to be tricky to administer and expensive to produce, we will all work together to simplify it and bring down the cost and make it accessible to the masses of people--as we did for AIDS drugs in Africa. And meanwhile, other curative therapies may come along that are simpler and cheaper.

After all, a year of AIDS drugs used to cost, what? $15,000 per year in Africa, and require refrigeration. Not anymore.

Who's the Berlin Patient?

The Berlin Patient. You may have heard about him, or his story may be news to you. If he is reading this, a warm hi from us at the AIDS Policy Project--we hope to have a beer some day with you.

So--basically, the Berlin Patient is an American man of about 40 who lived in Berlin, had AIDS and also leukemia. His leukemia doctor needed to give him a bone marrow transplant to treat the leukemia. But he used a special person as a donor--someone who was born with the "CCR5 deletion" (remember those initials) which means that the person cannot be infected with AIDS. About 1/1,000 Northern Europeans is born with this--it's a mutation.

And the rest, literally, is history.