Alive and Kicking
by Regan Hofmann
I was diagnosed with HIV in 1996, the official midpoint for the epidemic to date. Protease inhibitors had just started bringing people back from the brink of the grave and opening up the possibility of full life spans for people with HIV. Because the doctor who diagnosed me didn’t know about HIV treatment, and because I was diagnosed during seroconversion (which made my blood work look like that of someone who had lived with HIV a long time: high viral load, low CD4 count), he mistakenly told me I had a year, maybe two, to live.
Several months later, an AIDS specialist corrected the misinformation and told me I might live a long, healthy life.
After struggling to accept an imminent death, I had to teach myself to embrace life again. It was a weird adjustment. And I haven’t taken my mortality for granted since.
Fifteen years after I thought I was dying, I am astonished to still be here to interview a most remarkable AIDS survivor, the first person cured of AIDS—an American named Timothy Ray Brown, a.k.a. “the Berlin Patient.”
Brown is an American who was in treatment for leukemia in Germany and required a stem cell transplant. His doctor, Gero Huetter, MD, chose a donor who had a genetic mutation that made his CD4 cells immune to HIV. The transplant worked, and Brown no longer has HIV. When word of Brown’s cure got out, it was big news.
But the global media coverage created much confusion. I had friends emailing me saying, “Congratulations! We’re so happy for you.” What few understand is that Brown’s cure involved hundreds of thousands of dollars of experimental science, a rare and almost impossible-to-replicate set of conditions and the threat of death. A widely applicable cure is still not here.
Until someone figures out how to parlay what was learned in Brown’s case into a feasible cure, all of us living with HIV just have to keep on keeping on. It’s something you all do amazingly well. Which is why for this special 30th anniversary issue we decided to share (in “31 at 30” on page 36 and online at poz.com/30) the collective wisdom of 31 marvelous, strong and inspiring people who have lived with HIV for many years—in many cases for nearly the life span of the epidemic itself. Their words will further inspire you to good health.
June 5 marks 30 years since the first cases of what we now call AIDS were publicly reported. On that day let’s pay tribute to the more than 25 million people who have died of AIDS and renew our hope for the long and healthy lives of the 33.3 million others of us with HIV who are alive and kicking.
I am so grateful to still be here. I made it for several reasons: the love and support of my family and friends, access to care, and the education, empowerment and inspiration I found on the pages of POZ long before I became its editor. It is now my joy to offer the same survival tool to others. Each and every one of you inspires me every day. Keep telling us your stories. We listen to your needs, fears, triumphs and hopes. Continue to fight hard and know that we will be with you as long as you are living with HIV—and until we see the day, together, when HIV is kicked for good.
Search: Regan Hofmann, Timothy Ray Brown, The Berlin Patient, Gero Huetter, 31 at 30
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comments 1 - 3 (of 3 total)
bob, redmond, wa, 2011-06-16 18:48:17
The alteration process used to change genes in T cells to "immune" use CCR5 "attachment" or "receptor" sites.. means the point on the T cell where HIV can grab on. Most HIV uses this site. A small percentage uses CXCR4 site. There's no reason (I can see) that the gene for that site could not also be tweaked to be immune as easily as CCR5, making the whole cell immune to all of HIV. It should not affect the other functions of the cell significantly, either.
bob, redmond wa, 2011-06-14 17:29:30
Per latest Sangamo BioSciences pipeline, Gates just plunked down 100,000 to try this in one procedure instead of removing and re-injecting your own cells, they would do it inside of you while you wait. McImmune is objective. Trials grew to almost 40 patients in all stages, counts, meds resistive, no meds, AIDS, name it.
bob, , 2011-06-13 23:50:20
comments 1 - 3 (of 3 total)
The good news is about a dozen more have undergone a feasible version of the Berlin patient's treatment. Sangamo Sciences have been able to take your own T-cells sample, modify them so the gene for immunity is set, grow huge numbers of them (10's of billions) and re-inject. A scalable process to market this has been developed. The people who took part, all had grown new cd4 cells immune to the virus, and they migrated to the gut linings where HIV hides. Then Goodnight HIV.