Cured of HIV: "Berlin Patient" Discusses Sex, HIV, and Hope

“My cure is proof that HIV can be cured, [but] it is extremely expensive and impractical,” says Timothy Ray Brown, the world renowned “Berlin Patient,” who no longer has HIV.  Previously anonymous, Brown now publicly advocates for HIV/AIDS awareness, prevention, and treatment through the Timothy Ray Brown Foundation in conjunction with the World AIDS Institute.  Following his miraculous transformation from living with HIV to being, it seems, completely cured of any and all HIV infection in his system, Brown now works diligently to promote both education surrounding HIV and to advance awareness and support for increased antiretroviral treatment, the currently accepted cure to AIDS that is wholly effective and much less risky, and less costly, than the experimental stem cell procedure that annhiliated HIV from his body.

Basically, Brown needed a bone marrow transplant to combat leukemia; his doctor suggested to try a donor who had a rare genetic mutation that, essentially, provides immunity against HIV.  And, while the procedure fails in or kills everyone else, it worked with Brown.

Today, news broke that a child in Mississippi has been cured of HIV through a hit hard, hit early approach taken by researchers and doctors in relation to antiretroviral therapy.  Like Brown, the infant was HIV+ and, now, even after repeated rigorous testing, is not.  While both cases are importantly different in their practical meaning and application, both cases highlight a fact that escaped humanity for decades:  HIV is not permanent, HIV can be destroyed, and HIV, just like the human body, has vulnerabilities that can be exploited to kill it.

“It was 1995 when I tested positive for HIV. It wasn’t like now. At that point in HIV and AIDS history, an HIV diagnosis was a death sentence. I was scared to death. An ex-boyfriend had just tested positive and strongly suggested that I should get tested. After I tested positive he told me matter of factly that we only had about two more years to live,” Brown talks about his initial HIV diagnosis in an age where men were still dying with tragic regularity, where funerals were more popular than weddings, and where the United States government was still woefully behind the times in relation to HIV/AIDS treatment.  “I was concerned about taking the only medication available, AZT, because I had heard that it was very toxic and that a many patients had actually died from this medication. [My physician, however,] convinced me to take a very low dose of it.”

Like Brown, I myself refused to take antiretroviral treatment because of my own bias and preconceived notions thanks to the distressing side effects I saw in media and knew about through conversations.  “Buffalo hump,” “facial wasting,” and explosive diarrhea were just some of the typical side effects early methods of HIV treatment left in the already sick.  And, with these memories and experiences of others in my own mind, I refused, stupidly, to get onto treatment immediately.  Rather than treat the infection in my blood, I let it grow and degenerate my body until I was, literally, dying at near AIDS levels,.  My concerns, however, were completely wrong and unfounded; modern antiretroviral treatment barely has any side effects whatsoever; and, when they do happen, they’re as mild as an infrequent headache or bout of dizziness when waking.  And, like me, Brown has an idea of how he initially contracted HIV but has no absolute certainty surrounding the circumstances.

“I did not always use condoms. That is the truth. I would generally ask sex partners, not including long-term partners not to ejaculate inside of me. This usually worked fine,” Brown talks about the reality that most gay men engage in bareback sex.  Back in the 1990s, this was a much more dangerous prospect because the world had yet to experience the life-saving, and HIV transmission stopping, medications like Complera and Atripla and Stribild. “Once in Barcelona, getting my message [about not climaxing in my ass] across to this one guy was difficult because I still did not speak enough Spanish to do this correctly. This is the only instance [that seems notable in my sexual history to me]…I did panic.  I was lucky to have friends with whom I could talk about my newly determined status.  I was able to tell the head of the university program [I was enrolled in to explain] why I had not attended class [in days] and why I had been distracted during exams,” Brown, like almost everyone who tests HIV+, was distressed, scared, and distracted following his diagnosis.  He had difficulty going to class in college and taking exams; in my case, I had an emotional breakdown at my Vice President of Human Resources, calling him a c*cksucker, in Washington, DC.

“I did not cry,” Brown, in contrast to my professional breakdown and subsequent Amtrak ride back to Philadelphia after trying to make a presentation the day after my HIV+ diagnosis, did not sob publicly or even privately.  Instead, he coped in a common way.  “I got drunk but not more than usual; I rarely used drugs anymore so I did not ever do that to escape. I did have sex as often as possible because that was [my means of escape through compulsion].”  Years later, when asked by his oncologist to attempt a genetic switch in his bone marrow, Brown was skeptical, like all HIV+ people who read with depressing regularity hopeful stories about cures only to find that they are, at best, not entirely accurate or, at worst, snake oil.

“I have never thought that my procedure could become a widespread cure that could be used on others. Dr. Gero Huetter, who had the idea [to simultaneously attempt a bone marrow transplant and genetic grafting] tried transplanting ten other patients using the same procedure [used on me.]  They all passed away from their original illnesses such as leukemia, lymphoma, or other blood cancers.  He recently told me that I only had a 5% chance of survival after my second stem cell transplant.  Therefore, it almost killed me.  If it were not for my extremely pronounced will to survive and the love I felt from my by then ex-boyfriend as well as from other friends and family, I would not have survived,” like many other gay men living with HIV, Brown’s personal happiness and love in his life contribute, like it or not, to his survival.  Yet, the experience was daunting, traumatic, and painful.

“I have felt for a long time that I would not wish that what I went through on my worse enemy. Beyond this, it is extremely expensive and impractical. Only 1% of the Northern European population has the CCR5 Delta 32 mutation [the genetic "immunity" to HIV] that this required. Finding these donors is nearly impossible. However, my cure is proof that HIV can be cured. There are now many medical researchers, university medical centers, biotech companies and even several large pharmaceutical companies searching for a cure for HIV.  This was not the case before I was cured of HIV,” Brown explains the importance of understanding that, while his case is something that should not be expected to be repeated on almost any size or scale, it created the fact, demonstrated again today in Mississippi, that HIV is not a permanent virus; rather, it is as vulnerable as the bodies it infects and can, like us, be eradicated.

“I believe that [a widely available and administered cure] will happen within the next five to ten years.  This is the reason why the Timothy Ray Brown Foundation of the World AIDS Institute (please see http://www.worldaidsinstitute.org and ‘like’ World AIDS Institute and Timothy Ray Brown Foundation on Facebook) is focusing on education, awareness and funding to assist the scientific community in finding a cure for HIV,” Brown explains that he is not advocating for the same cure he found but, instead, advocating for greater education and, most importantly, hope for the HIV+.  With this in mind, he advocates, like me, for widespread access and adherence to antiretroviral medication to both end AIDS and stop HIV+ from being able to spread the virus.

“Antiretroviral treatment is extremely important. That is why if you are lucky enough to have access to treatment, unlike 10 million people word-wide who are in immediate need of antiretroviral therapy [then take the medication]…When Dr. Huetter first proposed this stem cell treatment to me, I saw no reason to do it. I was worried about staying alive right then. My HIV was under control with the antiretroviral treatment I was on. The leukemia was my major concern. That was in remission, so I said “no” at first. My goal was not altruistic: I wanted to save my life by getting rid of the leukemia,” Brown reminds me of my own focus on not going on antiretroviral medication because I feared, wrongly, that treatment would negatively impact my quality of life.  “Many patients go through trials for medication, vaccines and possible cures. I commend these patients. They are heroic and doing something that is very important. I wish I were that way [but I really just said yes to staying alive.]

“Antiretroviral treatment will be one big factor in getting to [as President Obama talked about in his State of the Union speech] an ‘AIDS free generation’. As you have written on your website and much evidence is coming out about this, transmission is basically non-existent if an undetectable HIV+ partner has sexual intercourse with an HIV- partner. Condoms are much less effective. I want to encourage HIV+ patients to take antiretroviral medication regularly. This will be necessary until there is a viable HIV cure available which, if necessary, may even be administered in a village tent anywhere in the world,” Brown points to the growing evidence that antiretroviral treatment, not a condom, is the most effective way to stop HIV transmission from happening altogether.

As an HIV+ man, I recognize that the issues surrounding my life and health are unique to me and the 20,000 Philadelphians living with HIV/AIDS here in my home city.  Therefore, I started wondering whether or not, now that he is definitively HIV negative, Brown was still like me.  After all, unlike me, he doesn’t take Complera every morning; and, unlike me, he could honestly check off the “HIV Negative” box in online profiles.

“I still consider myself as emotionally HIV+, although there is no sign of any living HIV virus in my body that has been found. I have not had to take any  medication for more than 6 years now. This status is all that is necessary for a cure. It is not important if I have a “sterilizing cure” or just a “functional cure”. I am HIV medication free. The virus is gone or fully under control. I am healthy without medication. That is what I desire. I will not forget my HIV+ brothers and sisters. I am now a co-founder of the World AIDS Institute with our mission being History, Treatment and Cure. I was HIV+ more than twice as long as I have been cured. I will never forget that. Technically, I will always be considered an AIDS patient because I once had a CD4 count below 300. This will most likely remain this way until more people become cured or no money is left to keep this practice in place. I hope that it will be the former,” Brown responds.  “I think that, no matter what, there will always be injustices that, until now, have been addressed by the HIV+ community. I think that we will need to keep on addressing these. I would like to see a more equal and fair society.”

“[Eventually, I hope we have] a cure for HIV which is easily accessible, inexpensive, effective and safe…In the meantime, I want to see investment in further treatment. I want everyone who is sexually active to get tested for HIV and if they are HIV positive, they need to get treatment. I agree with you that we need to take a new look at “safer sex” campaigns since condoms are only effective the majority of the time. Furthermore, we need to increase sex education in schools. Pretending that preaching abstinence is productive is lunacy. We cannot pretend that teenagers are not going to have sex. They need to be prepared to make the right choices. HIV testing needs to be available in schools. We need to get rid of stigmatization of people with HIV and AIDS…widespread global use of ARVs is necessary to slow down and stop the spread of the virus. Also, it is extremely important, for the patients themselves, that they take ARVs and remain healthy,” Brown reminds me that I put up with having to eat a peanut butter and jelly sandwich every morning at 7 AM for a very good reason:  to adhere precisely to my physician’s directives regarding how to take Complera.  In contrast, those on Atripla must take the medication on an empty stomach.  Notwithstanding the fact that forcefeeding myself is annoying, I do so to engage in the type of sex I routinely write about on this site.

“Having a sex life as an HIV+ gay male is easy, particularly in large cities: you just look for other HIV+ gay men and go for it. If the other guy is positive, even before we knew that an undetectable HIV+ person most likely cannot transmit HIV to an HIV- person, there was really not much to worry about. That was actually liberating for many of us. We no longer had to worry about being infected nor infecting the other person,” Brown touches on the fact that, for many of us, our sex lives started after our HIV diagnosis. I am still concerned about getting an incurable gonorrhea, chlamydia or any (curable or incurable) type of syphilis. However, I am no longer worried about getting re-infected with HIV nor, obviously, infecting others. This is extremely liberating.  And, condomless sex is the human norm, not the exception, and Brown seems to agree with my assertion.

“I am familiar with your work on barebacking. I have told you that I have a huge amount of respect for you for this. The CEO of the World AIDS Institute and co-founder of the Timothy Ray Brown Foundation, Dave Purdy recently wrote a piece for the Washington Blade entitled “Does Anyone Wear Condoms Anymore”.  Being a person who hates condoms and have been rather embarrassed to say so, I felt this very liberating. Your message is even more liberating. Yes, I do think condoms are unnatural. Why wear something that feels so awful if it is not even going to protect you more than ‘most of the time’?

“I think we ‘are seeing a return to normalcy with the emergence of more risk assessed barebacking’ [as you say]. Unfortunately, there have been so many years of well-meaning ‘safer sex’ propaganda, that it will take years before people quit believing that condoms will prevent HIV and AIDS. Besides the reduction in pleasure, I hope this lack of understanding on this does not mean unnecessary transmission of the virus.

Yet, even though we are seemingly returning to the human default setting of condomless sex under certain conditions, namely adherence to antiretroviral medication, we also have to confront the fact that it is 2013, not 1969, and the world has changed.  Brown rhetorically wonders whether or not we would want to go back to 1969 if we could; after all, HIV/AIDS has shaped several generations of gay men, influenced mass media and culture, and has created an entire industry of noble outreach workers and prevention specialists.

“It would be nice to go back to the days of the sexual revolution but obviously not back to the days before antibiotics. It is hard to determine if we really want to go ‘back to where we were before the emergence of HIV/AIDS.’”

Featured image screenshot courtesy of the World AIDS Institute.  For more information on Timothy Ray Brown, his foundation, or the World AIDS institute, click here.  To share this article, permalink it via http://joshkruger.wordpress.com/2013/03/04/berlinpatient/