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Gambling for a Cure for HIV

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I have never been a big gambler -- as I hate to lose money I don’t have -- but when it comes to HIV, I’m willing to put my life on the line.

After a year in an experimental Phase 2 gene therapy trial to make my CD4 T-cells resistant to the virus, I have experienced what may be considered a breakthrough in HIV research.

After over 20 years of fighting HIV, and only recent years with undetectable viral load, I may have finally gotten my stubbornly low CD4 count into a safe range. I had resigned myself to living with low CD4 cells, but as time passed I knew I was more and more at risk of becoming sick. There are no guarantees with this study, but it looks like the gamble is paying off.

The study has also met -- and perhaps gone beyond -- its initial objectives for most of the other participants as well, and it is setting the stage for further research towards a cure for HIV.

As recently reported at ICAAC in Chicago, study investigators showed that zinc finger nuclease gene therapy represents significant progress towards a "functional cure" for HIV (control of HIV without antiretroviral drugs). The results also showed that some participants had an unprecedented lowering or maintenance of virus levels several months after interrupting antiretroviral treatment.

I was in a unique position to watch first-hand as this story has unfolded, exciting the world of AIDS cure research, for which I have been an advocate for the past several years.

Not only have I been an active player as a study participant, but I have also helped organize meetings with prominent researchers in the field. I have witnessed the world open up to the possibility of a functional cure for HIV, seen the first case of an actual cure (the "Berlin Patient"), and now have become a part of the first clinical trial to successfully repair damaged immune systems.

I was the third person to enroll in the study, one of the first HIV gene therapy trials ever. I first received CCR5-deleted genetically engineered CD4 cells in September 2010, and I have previously written about my experience and early results.

As the spring and summer progressed, I continued to receive positive lab results, one after the other. I reached a high of 598 CD4 cells/mm3, but never fell back to my baseline level of 294. My average CD4 count over the year was 488 cells/mm3 and my CD4 percentage averaged 21.2%, up from a baseline of 14.7%. I never fell ill with common upper respiratory infections that would persist before the trial. All of these numbers add up to significant progress for someone who has been living with HIV for over 22 years, with consistently low CD4 cells.

Of course I took considerable risks to be apart of this study including leukapheresis, a process that separated white blood cells from my whole blood. Since the San Francisco apheresis clinic was non-operational, I had to fly to the UCLA clinic to have the procedure done. People with cancer have been getting apheresis for years, so I understood that it was safe. I was given an IV in both arms and my white blood cell "product" was collected in less than 2 hours. I was back at my apartment in the Bay Area the next afternoon.

My white cells were then sent to the laboratory to undergo the gene therapy process. A zinc finger nuclease is used to cut out the gene that encodes the CCR5 coreceptor, which most types of HIV need to enter cells.

I waited a month or so, and then received an infusion of the modified CD4 cells, which only took 20 minutes in the doctor’s office. According to the study results, less than 6% of the total infused cells were modified, which shows that it doesn’t take many of these cells to have an effect, as they are apparently proliferating.

Over the course of the past several months, I showed up for 6 rectal biopsies at 6:30 in the morning. These biopsies are critical to show that the altered cells would "traffic" to my gut, one of the critical reservoirs of HIV in the body.

Not requiring anesthesia, I simply had to clean myself out and show up without having had my morning coffee! I have never experienced such professional, adept doctors and nurses, taking care to ensure my comfort and yet perform their intricate job of collecting biopsies. Who knew that 20 snips of gut tissue in my sigmoid colon would be so painless and effortless?

In late July I volunteered to give up a lymph node so the researchers could examine it under a microscope to see what kind of shape it was in and to look for the CCR5 gene-modified CD4 cells. I was given a local anesthetic and a one-inch incision was made in my left groin in order to fish out the lymph node. I have not been privy to these results yet, but the process was relatively easy, despite having my lower abdomen cut open.

I recently completed my 12-month visit to collect blood and urine, and now I will be followed for 5 years. Since our cohort was the first group of HIV positive people to undergo this type of gene therapy, we must be monitored for any complications.

My hope is that my CD4 count will maintain itself and that it may be possible to have a second or third infusion of altered cells. One day, after more research with this zinc finger technology, my dream is to be able to stop my antiretroviral medications. Who would have guessed that after fighting for anti-HIV drugs for 20 years, that one day I may not need them!

10/11/11