Timothy Ray Brown's Continuing Activism Toward Curing HIV
2017; Mary Ann Liebert, Inc.; Volume: 34; Issue: 1 Linguagem: Inglês
10.1089/aid.2017.0318
ISSN1931-8405
Autores Tópico(s)HIV, Drug Use, Sexual Risk
ResumoAIDS Research and Human RetrovirusesVol. 34, No. 1 CommentariesFree AccessTimothy Ray Brown's Continuing Activism Toward Curing HIVTimothy Ray BrownTimothy Ray BrownSearch for more papers by this authorPublished Online:1 Jan 2018https://doi.org/10.1089/aid.2017.0318AboutSectionsPDF/EPUB Permissions & CitationsPermissionsDownload CitationsTrack CitationsAdd to favorites Back To Publication ShareShare onFacebookTwitterLinked InRedditEmail “My name is Timothy Ray Brown and I am the first person in the world cured of HIV.” That is how I opened the article I wrote for AIDS Research and Human Retroviruses 4 years ago.1 In 2017, I celebrated the 10th-year anniversary of the bone marrow stem cell transplant that cured my HIV infection. Much has changed and much has stayed the same since that time. There have been both failures and successes in the search for a cure to HIV in the past 10 years. Challenges remain in the funding of innovative ideas in scientific research and in the education of the public and the social roadblocks to finding a cure. Initially, I thought that this piece would focus on decreases in HIV cure research funding under the Trump administration, expecting huge cuts to funding for the National Institutes of Health (NIH). However, I discovered that luckily there are enough U.S. Congressional members in the Republican Party who believe in the need for medical science.Although I remain ever optimistic that the scientific and medical communities will find a cure for HIV, if properly funded, I am still concerned about the general public opinion in support of this important work. We recently had a close call with efforts to cap individual funding levels that would have crippled HIV Cure Research and the Delaney Cure Consortia.2 However, a strong negative response to this cap, including an open letter from me to raise awareness of this issue, prevented this change.3 Now that this catastrophe of funding has been averted, I see now how it happened in the first place—apathy in public opinion. Although I sometimes feel lost when I meet with scientists to discuss their research, I see their excitement and optimism at the progress being made toward a cure. We must protect this progress!In the past 4 years, I have traveled the country and parts of the world challenged by HIV and have talked to scientists, activists, researchers, and people living with HIV (PLWHIV) about their hopes and concerns. As 2017 was my 10th-year anniversary of being cured of HIV, I had an exceptionally action-packed year. Because bone marrow stem cell transplants replace the entire immune system of the patient, thus making a person with a new immune system (almost a fully new person), each year that the patient survives after the transplant is a “birthday” worth celebrating. For this reason, I like to refer to my rebirth after being cured as my “cure birthday” (the 10th anniversary of the bone marrow stem cell transplant that cured me of HIV). I was able to officially celebrate this 10th birthday multiple times in 2017.The most memorable celebration was in my birth city of Seattle. HIV activist, Michael Louella, along with his employers, “Defeat HIV” and Fred Hutch “Cures,” invited me to a celebration where I received a cake to share. Delightfully, both my partner, Tim, and my mother were able to attend. I was overjoyed that they could be there. A room full of HIV cure researchers also celebrated with me because they were there for a conference at Fred Hutchinson Cancer Research Center happening the following couple of days. The day after the celebration, the conference on HIV cure started. Many ideas were presented. Since I am not a scientist, I often find it difficult to understand the presentations. The great thing about this conference was that each presenter added a “community slide” at the end of his or her presentation, which was a summary of each presentation for lay people like myself. The one presentation that I found the most promising was on combining CRISPR-associated protein-9 nuclease (CRISPR/Cas9) technology with some of the current antiretroviral medication (ARVs).I also attended multiple conferences including the 2017 International AIDS Society (IAS) meeting in Paris and the Reunion Project for activists and patients. I visited a few research centers such as Fred Hutchinson Cancer Research Center and the Desmond Tutu HIV Foundation. A highlight of the year was a trip to South Africa with my partner Tim to share the message and importance for a cure for HIV. I had been invited to speak at the South African Infectious Disease Symposium in September. We had a couple of days to acclimate before I spoke. The day I arrived, a journalist from a major South African newspaper interviewed me. The article was published in the Sunday paper and raised awareness about the possibilities of a cure for HIV. People told me afterward that my speech went well, although I am always my worst critic. I always think I did poorly. The hotel was beautiful and it was easy to buy espresso there, which is always very important to me, particularly when I am having to think. However, by Friday, we were ready to leave and happy to be picked up by a very bright and nice young man who took us to the Gugulethu Township in Cape Town. He and a clinic director gave us a tour of the Desmond Tutu Health Clinic there. Then I was asked to speak to the patients sitting in the waiting room. Most importantly, I had to make sure I refrained from presenting the patients false hope. Before I began, I made sure that they realized that my case only proves that HIV can be cured but that it was very difficult; I had come extremely near dying several times. Our driver translated from English into Xhosa, the language used by most black South Africans in Cape Town. One of the directors explained that there is the health clinic and the HIV clinic. People requiring care from the HIV clinic generally do not want people to know because the township is small enough for other people to know their business. There is still much stigma toward PLWHIV in South Africa even though the rate of those infected is very high there (estimated to be 12% of the population).After getting some lunch at a sandwich shop, we went to the headquarters of the Desmond Tutu HIV Foundation where we met Professor Linda Gail-Bekker, chief operating officer of the Foundation and president-elect of the IAS. Linda and I spoke, along with an HIV-positive black South African woman, Nombeko, to a group of mostly HIV-infected young people. Our presentations went over very well. For the weekend, we went sightseeing, experiencing the beauty of the city and surroundings. A wonderful mixed (one black/one white) gay male couple hosted us in their nice condominium and made dinner for us Friday evening. We saw great views of the city and Atlantic Ocean from the base of Table Mountain and then went to see African penguins at a beach outside of the center on Saturday. Sunday we went to a gorgeous botanical garden and then to a bird and wildlife sanctuary where we went into a monkey cage with small monkeys that ran around and would jump up on us when we sat down. We ate at fantastic restaurants both Saturday and Sunday. The restaurants were incredibly inexpensive and the food was delicious!Late afternoon on Monday, we toured the HIV laboratories at the University of Cape Town and I did a couple of interviews for the student newspaper. Then we went to the auditorium where several HIV researchers and I spoke in front of university students, government healthcare officials, activists, and patients. The last day, Tuesday, we went downtown and the waterfront and then were taken to another township and toured the Desmond Tutu HIV Centre's youth center where I spoke to the high school youth group. The full group of about 40 kids was divided into four groups and they came up with questions to ask me after I had given a speech to them. I enjoy talking with high school kids. These kids seemed more knowledgeable about HIV than the high school students I talk with in Riverside County in California, United States.The entire experience in Cape Town, South Africa, was amazing. I felt that it was successful in giving my hosts what they wanted from me. I was able to give PLWHIV and their friends and families hope without giving them false hope. Furthermore, I think my story continues to be an inspiration to researchers including students and faculty at universities and perhaps pharmaceutical companies. Although our current U.S. President does not find that further HIV cure research is important enough to continue funding it, I am still playing my small role in doing what I can to make sure it continues until HIV can be cured in easier and simpler ways with the assistance and hard work by brilliant medical scientists.In my “10th Cure Birthday” year, I also participated in the Steven Deeks' SCOPE study in an attempt to further answer how I was cured. As it was explained to me, a procedure called leukapheresis was used to isolate cells from my blood that can harbor HIV. Leukapheresis is a laboratory procedure in which white blood cells are separated from the blood, without removing any red blood cells. It is a specific type of apheresis, the more general term for separating out one particular constituent of blood and returning the remainder to circulation (Wikipedia). I am hopeful that this experiment will bring us one step closer to a cure.Medical scientists dealing with my case are not really certain what actually cured me of HIV. I think it was the lack of C-C chemokine receptor type 5 (CCR5) protein in the donor stem cells, but I am not a medical scientist so I realize I could be wrong. One medical scientist, Tim Henrich (known for his work on The Boston Patients),4 who is now at University of California, San Francisco (UCSF) and San Francisco General Hospital, explained to my partner, Tim, and myself that this procedure should clear up this controversy as to why I am cured.They were planning to look specifically at CD32 cells. A 2017 article in the journal Nature suggested that these cells are a major hiding place for HIV. I have not seen any results yet. I think the most important thing is that I no longer have to take ARVs, that I am healthy and noninfectious. I take daily Truvada as pre-exposure prophylaxis (PrEP) to be certain that I do not contract HIV again and do not infect anyone. I am hoping to hear good results soon. I have learned many new things and remain confident in the scientific progress toward a cure.Unfortunately, I have also learned a few things last year that I found disappointing. Michael Louella also invited me to another conference, the Reunion Project for activists and patients. I participated in two HIV cure seminars. He started each seminar by asking the participants what an HIV cure means to them. The responses from many of them surprised me. Perhaps I misinterpreted this, but I would say most of them indicated that they were afraid of HIV being cured. This is mostly due to the fear of how it would worsen their lives, that they would stand to lose all or most of the benefits they have today.The vast majority of them, if not all, are U. S. citizens and largely dependent on the help that the federal government, their various states, and AIDS service organizations provide them. It seemed to me that they felt that their lives were stable and predictable. I understand this unease and have had negative experiences myself. If a cure were found, then their lives would be upended and they would have to start all over again. I would tell them I am grateful for my new lease of life being happy, healthy, and noninfectious.I understand this unease and have had negative experiences myself. In my Reunion Project presentations I mentioned that I had tried to get reduced housing costs in an HIV housing complex and even asked my friend, University of California (UCSF) Professor Jay Levy, send a letter on my behalf. Ironically, I was refused because I do not have HIV because I have been cured. Furthermore, the main HIV organization in the Coachella Valley, where I reside, initially refused me membership in that organization because I am cured. That has since changed and I am now a volunteer there.Everything worked out fine but I wanted to describe how I understand their fears, but argue that being cured of HIV definitely has advantages. I have made a life for myself despite my physical defects and disabilities. Being a leukemia survivor allows me to be on U.S. Social Security. The audience reaction was still a disappointment to me because I thought everyone, particularly PLWHIV, wants HIV to be curable.For example, I am in a group on Facebook called the “International place for people with HIV/AIDS, and the people who love us.” I always had the feeling from the members of that group that PLWHIV still want to be cured although that is an international group and not specific to the United States. Furthermore, they want the HIV/AIDS crises to come to a final end.Despite this support for a cure, others remain skeptical. I was very disappointed when one of my friends asked me why I was putting so much effort into making sure other people with HIV are cured. He told me that he did not understand why a cure was necessary since he was happy to take his ARVs and was doing just fine on them. That hurt my feelings. I have found this opinion growing among the younger generations who do not know what it was like before. Of course, this attitude might “work” in the United States where ARVs are readily available and relatively affordable. What about all the PLWHIV outside the United States? I continue to be resolved to continue to advocate for a cure by supporting medical researchers toward finding cures for HIV and trying to give PLWHIV hope that an HIV cure is possible while not necessarily easy.In the final analysis of my busy 10th “birthday” year, I have discovered two things. One is the sadly decreasing public desire to find a cure for HIV and the other is that funding for scientific research for HIV is dependent on that public desire.The recent attempt to cap the individual funding levels for researchers is a great example of public opinion changing policy. I will continue to play my small role in educating the public that finding a cure for HIV is important to the health and well-being of our country and the world. In the atmosphere of the current Trump administration and the attacks on the integrity of the scientific research community, we all must actively support widespread public education and scientific and medical research to finally find a cure for HIV.Author Disclosure StatementNo competing financial interests exist.References1 Brown TR: I am the Berlin patient: A personal reflection. AIDS Res Hum Retroviruses 2015;31:2–3. Link, Google Scholar2 Hope TJ: Upcoming implementation of NIH funding caps invites researcher feedback. AIDS Res Hum Retroviruses 2017;33:iii. Link, Google Scholar3 Brown TR: Don't let funding caps to NIH researchers harm highly collaborative HIV cure research. AIDS Res Hum Retroviruses 2017;33:iv. Link, Google Scholar4 Henrich TJ, et al.: Long-term reduction in peripheral blood HIV type 1 reservoirs following reduced-intensity conditioning allogeneic stem cell transplantation. J Infect Dis 2013;207:1694–1702. Crossref, Medline, Google ScholarFiguresReferencesRelatedDetailsCited bySegmented intravaginal ring for the combination delivery of hydroxychloroquine and anti-CCR5 siRNA nanoparticles as a potential strategy for preventing HIV infection17 April 2021 | Drug Delivery and Translational Research, Vol. 12, No. 4Timothy Ray Brown: The Serendipitous Hero of HIV Cure Research Thomas J. Hope, Nichole R. Klatt, Jonah B. Sacha, and Paula M. 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