 |
| Photographed Exclusively for A&U by Sean Black |
Or, more pointedly: Where is the affordable, available-to-everyone
cure? That’s exactly the question Timothy Ray Brown seeks to answer
through his work with the Cure for AIDS Coalition.
Until not that long ago, Timothy Ray Brown was only known in research circles and the media as the Berlin Patient, that is, the first (and so far only) known person ever to be cured of HIV. Nowadays, his name rings that proverbial bell throughout the country and the world.
Occasionally, some people still call him “the Berlin Patient,” Brown shares with me over the phone. While it doesn’t seem to bother him, he adds, “I wanted to take back my name. I think that that would be the best way to get my story out there. And I think it’s appreciated by researchers, too, that I came out.”
Brown is not your usual activist. Or at least, he doesn’t seem to be. He’s soft-spoken, calm. Not necessarily what many might associate with what an activist should or would sound like. And yet, Brown might just be the activist to help us reconsider how we think in terms of finding a permanent solution (or solutions, as I find out from Brown) to HIV and AIDS.
I remember reading about Berlin Patient’s story several years ago. It mentioned an American man living with HIV and leukemia and who underwent a stem cell transplant procedure in Berlin, Germany (hence the name, “the Berlin Patient”), where he was living at the time. But that media narrative might be a very simplistic way of trying to describe Brown’s challenging, and also compelling journey through the hazards of eliminating the virus from his body and, ultimately, to a life free of HIV.
Many individuals living with HIV often look at their lives through a before-and-after filter, a transparent, yet impenetrable wall that might allow them to look back, but not go back to a life before an HIV diagnosis. Timothy Ray Brown has gone back to a life before an HIV diagnosis. He’s living proof that breaking that seemingly impenetrable wall is possible, and that going back to an HIV-negative status is, indeed, something that can actually be achieved.
The story of Timothy Ray Brown doesn’t start with the Berlin Patient or with his being cured of HIV. His story starts in his native Seattle, Washington, a city that saw its first cases of AIDS in 1982. Two years later, when Brown graduated from high school, Seattle’s AIDS cases were in the dozens. Brown went on to take classes at Seattle University, and also, around 1989, joined ACT UP/Seattle. Then, in 1990, he went on a trip to Europe, where he returned a few months later, and settled in Germany and took a job as a translator.
He studied political science in Berlin. It was there, in 1995, that he was diagnosed with HIV. Brown’s diagnosis came at a time of promising changes and medical advances in HIV treatment, when the new medications conferred a Lazarus effect on many of those living with the virus. A few short months after his diagnosis, thanks to those new drugs, Brown’s engagement in HIV treatment became “an inconvenient” (having to take up to fourteen pills a day) but “manageable” task.
But the story doesn’t end there; far from it. Fast-forward about ten years later to a time when Brown was diagnosed with acute myeloid leukemia (AML), a cancer that causes bone marrow to make abnormal cells.
Right away, Brown started chemotherapy to treat the leukemia, under the care of Dr. Gero Hütter, a hematologist, the doctor whose treatment of Brown would cure him of both leukemia and HIV.
Dr. Hütter took Brown’s blood samples and sent some of them to the German Red Cross. His idea was to try curing his patient’s leukemia—and maybe even HIV—by performing a stem cell transplant from a donor with a gene mutation, one that makes someone resistant to HIV infection.
HIV attacks the immune system by connecting to and then invading a certain type of immune system cell, called a T cell. Most strains of HIV use a T-cell protein, called CCR5 (or C-C chemokine receptor type 5) as a co-receptor to invade the host cell. Scientists have discovered that some individuals living mainly in northern Europe carry a mutation in their CCR5 gene, called a CCR5-delta32 mutation that, in turn, protects them from getting infected with the strains of HIV using CCR5 protein as an entry door into the host cell. (A class of antiretrovirals called entry inhibitors disrupts this or other coreceptors and proteins.)
In order to ensure that he had the best chances to cure his patient of HIV, Dr. Hütter didn’t look just for any kind of stem cell donor, but for a donor with this particular CCR5-delta32 mutation. And he found the right donor, also referred to by experts as “donor #61 homozygous for the CCR5-delta32 deletion.”
The procedure was far from a walk in the park. “I’d done a lot of soul searching,” Brown says, recalling his decision to go ahead with the stem cell transplant procedure. “My leukemia was in remission, and I thought, if it doesn’t come back, I don’t want to [go through with it].”
But by the end of 2006, Brown’s leukemia did come back. Shortly after that, it became clear that he was going to have to go through with the stem cell transplant after all.
“They took me off the chemo,” Brown says, explaining that that in itself could mean an increased risk of infection. “[Doctors] did a full body radiation, on my body, to [kill] my immune system and prepare me [for the transplant].
“I ended up having a second transplant, because after the first one, the leukemia came back in 2007. [After the second transplant] I went back to work, and I also went [back] to the gym. And I did notice that before the transplant I could not develop muscle; [after the procedure] I was actually able to regain muscle. That was kind of funny. I don’t think there was any discussion about me having a long term remission from HIV or being cured until [after] the second transplant.”
Doctors checked their patient thoroughly, looking for traces of HIV anywhere and everywhere in his body, ending up finding none. And still, months after that second transplant, Dr. Hütter and his team were very careful not to use the term “cured,” when referring to their patient, and so they called it “long-term remission” instead.
“In fact,” Brown underlines, speaking of Dr. Hütter, “in his paper that he wrote after the second transplant, and that was published in the New England Journal of Medicine, he used the term ‘long term remission.’ And so, actually, I didn’t believe that I was cured until that paper was released.” He laughs. “It took the New England Journal of Medicine [article, for me] to believe [that I was cured of HIV].”
Brown shares his amazing story, carefully using scientific and lay terms. Listening to his story, I wonder how it feels to be cured of HIV.
“It feels very good not [having] to take the medication for HIV,” Brown says. “Not to worry about that.” He goes on, “I don’t mean to say that it controlled my life, because that was something I’d do every day, I’d take my medications, but it felt very good not to have to do that anymore.”
Brown’s answer seems simple, but it’s profound for anyone who has taken antiretrovirals, switched regimens, and worried about viral loads, T-cell counts, and opportunistic infections. Maybe it gives a glimpse into what life would look like for many people, once we have an HIV cure—a sense of relief, breathing room. And that, alone, is amazing. That’s why these days, Brown’s attention is focused on making an HIV cure—or cures—a reality for everybody in need of one.
Timothy Ray Brown has been working on strategies to make that possible. In 2012, he founded the Timothy Ray AIDS Foundation. He also cofounded Cure for AIDS Coalition together with Dave Purdy, an HIV/AIDS activist who also serves as the Coalition’s CEO. (Recently, the Timothy Ray AIDS Foundation website has become one and the same with the Cure for AIDS Coalition, cureaidsreport.org.)
“Originally we were working under the World AIDS Institute,” Purdy explains. “Then we quickly realized that the missions were different, and that we needed to focus all our attention on a cure for a lot of different reasons. So we thought about starting a foundation, and we’ve since decided to create the Cure for AIDS Coalition.”
Brown has become a tireless advocate, bringing his message as a keynote speaker at conferences, colleges, and foundations, and has been featured in an episode of the HBO documentary, VICE. He went straight to the top to make cure research a priority by writing a letter to President Obama. In his letter, which is posted on the Cure for AIDS Report website, Brown mentions that, since he was cured in 2007, he has “given [his] mind, body and soul over to finding a cure for HIV.” The experience has taken him on a journey not only through being cured of HIV, but also through a more spiritual, transformational journey that, at least in part, turned him into the symbol of hope he is today, not only when it comes to an HIV cure, but also a cure for cancer.
It turns out that Brown and Purdy did hear back from (now former) White House AIDS Czar, Douglas Brooks, saying that Brown will be receiving a letter from President Obama. “For the record,” Purdy says, “that’s the first time Timothy [Ray Brown] has actually written a letter like that; actually, anything like that. It’s kind of a big deal for us.”
It seems that working together, Brown and Purdy have helped find solutions to problems seemingly impossible to solve. “Working together [scientists, activists, researchers],” Purdy says, “is a very important part of making a cure come to fruition. And thinking outside the box,” he adds. “[Try] everything. And if it doesn’t work out then [try something else]. Don’t give up!” The Coalition offers primers on the need for a cure, research strategies, and the obstacles (scientific, cultural, and political) involved. Researchers are currently looking at two types of cures: a sterilizing cure (in which no trace of HIV can be found in the body, as in Timothy’s case) and a functional cure (in which HIV remains in the body, but the individual no longer has to take HIV meds).
Dr. Hütter has tried to replicate the Berlin Patient’s success story with other patients. It did not work out.
Doctors in the U.S. have tried similar potential HIV cures, to no avail. There’s the case of the two Boston Patients, who received bone marrow transplants from donors, in 2008 and 2010, respectively. Unlike the Berlin Patient, the Boston Patients received stem cells from donors who were not immune to HIV. Also, the patients were not taken off anti-HIV medications after the transplant procedure. While their doctors, HIV specialists Timothy Henrich and Daniel Kuritzkes, based in Boston, Massachusetts, made the announcement that their patients were free of HIV, they also mentioned that it was too soon to call it a cure. It was too soon. The virus rebounded, months after the patients were taken off their anti-HIV medications.
Then there’s the case of the Mississippi toddler. The little girl was started on anti-HIV drugs right after birth, and the child appeared to be virus-free for the following two years. Her pediatrician, Dr. Hannah Gay, at the University of Mississippi Medical Center, in Jackson, Mississippi, later mentioned that HIV must have been dormant in the girl’s body for all those two years.
“In general, I think that we’ve learned a lot from when I was a patient, from the Boston Patients [for example],” Brown says.
In spite of the setbacks, scientists are not giving up. There are promises, but also obstacles along the way. “I’ve talked with one of the researchers working with a doctor performing these [procedures], and, unfortunately, it’s hard to find recipients,” Brown says. He explains that these procedures could be risky. Meanwhile, patients are doing well on their medications. So, there’s sometimes little incentive for them to enroll in studies, to help find a cure once and for all.
“And that’s what we’re trying to do as well,” Purdy adds. “If you look on our Cure AIDS Report website, we listed clinical trials [available across the country and around the world] for people who might be interested. Because a cure can come from different angles and different parts of the world.”
Purdy continues, “It seems like, back in the day, when people were dying [of AIDS-related causes], they were [more willing] to take risks. I think people are [still] willing to take risks [when it comes to participating in clinical trials to possibly find a cure for HIV.] I hope that people realize that the research benefits them.”
While some researchers are looking at sterilizing or functional
cures, some are focused on preventative vaccines. “At first, I was very
pro-cure, since no [preventative] vaccine has been found to be effective
a hundred percent,” Brown says. “So, I was kind of for a cure. It would
be nice [to have] both. In a way we sort of have a [preventative]
vaccination in PrEP. I’m very pro-PrEP. I wish it were around before I
became HIV-positive. It would have saved a lot of problems.” Brown says
“sort of” because, unlike a vaccination, with its occasional boosters,
PrEP is an ongoing daily regimen.
Purdy notes, “I guess, arguing about vaccine versus cure, we know that cure gets so much attention, especially from the media. Timothy [Ray Brown] realized that right from the beginning. We actually support all avenues. Interestingly enough, the vaccine [research] group has started to merge somewhat with the cure group. [We] think it’s because they can share knowledge and resources. And they can help each other. Because I think everybody agrees that a vaccine is going to be critical for the long term. Treatment as prevention is critical as well.”
Brown tends to believe that the cure strategy involving elimination or derailing of CCR5 protein might be a way to go. “I’m thinking that that’s going to be one of the keys to getting rid of HIV,” he says, while explaining that he’s also open to considering other strategies.
“I’m proof that HIV can be cured,” Timothy Ray Brown says. “But we have to find out better ways to do it, because nobody wants to go through what I went through, [but] if you have tested positive, don’t give up! You can do very well on medications.”
And, he adds, ever the caring advocate: “Also, and I’m saying this as a former smoker, people living with HIV live a usual lifespan, unless they smoke!”
Find out more about Timothy Ray Brown and his work at www.cureaidsreport.org.
Alina Oswald is Arts Editor of A&U. An accomplished photographer, she is also the author of Journeys Through Darkness, a biography of artist Kurt Weston. Visit her website at: www.alinaoswald.com.
Read more articles from A&U, here.
Until not that long ago, Timothy Ray Brown was only known in research circles and the media as the Berlin Patient, that is, the first (and so far only) known person ever to be cured of HIV. Nowadays, his name rings that proverbial bell throughout the country and the world.
Occasionally, some people still call him “the Berlin Patient,” Brown shares with me over the phone. While it doesn’t seem to bother him, he adds, “I wanted to take back my name. I think that that would be the best way to get my story out there. And I think it’s appreciated by researchers, too, that I came out.”
Brown is not your usual activist. Or at least, he doesn’t seem to be. He’s soft-spoken, calm. Not necessarily what many might associate with what an activist should or would sound like. And yet, Brown might just be the activist to help us reconsider how we think in terms of finding a permanent solution (or solutions, as I find out from Brown) to HIV and AIDS.
I remember reading about Berlin Patient’s story several years ago. It mentioned an American man living with HIV and leukemia and who underwent a stem cell transplant procedure in Berlin, Germany (hence the name, “the Berlin Patient”), where he was living at the time. But that media narrative might be a very simplistic way of trying to describe Brown’s challenging, and also compelling journey through the hazards of eliminating the virus from his body and, ultimately, to a life free of HIV.
Many individuals living with HIV often look at their lives through a before-and-after filter, a transparent, yet impenetrable wall that might allow them to look back, but not go back to a life before an HIV diagnosis. Timothy Ray Brown has gone back to a life before an HIV diagnosis. He’s living proof that breaking that seemingly impenetrable wall is possible, and that going back to an HIV-negative status is, indeed, something that can actually be achieved.
The story of Timothy Ray Brown doesn’t start with the Berlin Patient or with his being cured of HIV. His story starts in his native Seattle, Washington, a city that saw its first cases of AIDS in 1982. Two years later, when Brown graduated from high school, Seattle’s AIDS cases were in the dozens. Brown went on to take classes at Seattle University, and also, around 1989, joined ACT UP/Seattle. Then, in 1990, he went on a trip to Europe, where he returned a few months later, and settled in Germany and took a job as a translator.
He studied political science in Berlin. It was there, in 1995, that he was diagnosed with HIV. Brown’s diagnosis came at a time of promising changes and medical advances in HIV treatment, when the new medications conferred a Lazarus effect on many of those living with the virus. A few short months after his diagnosis, thanks to those new drugs, Brown’s engagement in HIV treatment became “an inconvenient” (having to take up to fourteen pills a day) but “manageable” task.
But the story doesn’t end there; far from it. Fast-forward about ten years later to a time when Brown was diagnosed with acute myeloid leukemia (AML), a cancer that causes bone marrow to make abnormal cells.
Right away, Brown started chemotherapy to treat the leukemia, under the care of Dr. Gero Hütter, a hematologist, the doctor whose treatment of Brown would cure him of both leukemia and HIV.
Dr. Hütter took Brown’s blood samples and sent some of them to the German Red Cross. His idea was to try curing his patient’s leukemia—and maybe even HIV—by performing a stem cell transplant from a donor with a gene mutation, one that makes someone resistant to HIV infection.
HIV attacks the immune system by connecting to and then invading a certain type of immune system cell, called a T cell. Most strains of HIV use a T-cell protein, called CCR5 (or C-C chemokine receptor type 5) as a co-receptor to invade the host cell. Scientists have discovered that some individuals living mainly in northern Europe carry a mutation in their CCR5 gene, called a CCR5-delta32 mutation that, in turn, protects them from getting infected with the strains of HIV using CCR5 protein as an entry door into the host cell. (A class of antiretrovirals called entry inhibitors disrupts this or other coreceptors and proteins.)
In order to ensure that he had the best chances to cure his patient of HIV, Dr. Hütter didn’t look just for any kind of stem cell donor, but for a donor with this particular CCR5-delta32 mutation. And he found the right donor, also referred to by experts as “donor #61 homozygous for the CCR5-delta32 deletion.”
The procedure was far from a walk in the park. “I’d done a lot of soul searching,” Brown says, recalling his decision to go ahead with the stem cell transplant procedure. “My leukemia was in remission, and I thought, if it doesn’t come back, I don’t want to [go through with it].”
But by the end of 2006, Brown’s leukemia did come back. Shortly after that, it became clear that he was going to have to go through with the stem cell transplant after all.
“They took me off the chemo,” Brown says, explaining that that in itself could mean an increased risk of infection. “[Doctors] did a full body radiation, on my body, to [kill] my immune system and prepare me [for the transplant].
“I ended up having a second transplant, because after the first one, the leukemia came back in 2007. [After the second transplant] I went back to work, and I also went [back] to the gym. And I did notice that before the transplant I could not develop muscle; [after the procedure] I was actually able to regain muscle. That was kind of funny. I don’t think there was any discussion about me having a long term remission from HIV or being cured until [after] the second transplant.”
Doctors checked their patient thoroughly, looking for traces of HIV anywhere and everywhere in his body, ending up finding none. And still, months after that second transplant, Dr. Hütter and his team were very careful not to use the term “cured,” when referring to their patient, and so they called it “long-term remission” instead.
“In fact,” Brown underlines, speaking of Dr. Hütter, “in his paper that he wrote after the second transplant, and that was published in the New England Journal of Medicine, he used the term ‘long term remission.’ And so, actually, I didn’t believe that I was cured until that paper was released.” He laughs. “It took the New England Journal of Medicine [article, for me] to believe [that I was cured of HIV].”
Brown shares his amazing story, carefully using scientific and lay terms. Listening to his story, I wonder how it feels to be cured of HIV.
“It feels very good not [having] to take the medication for HIV,” Brown says. “Not to worry about that.” He goes on, “I don’t mean to say that it controlled my life, because that was something I’d do every day, I’d take my medications, but it felt very good not to have to do that anymore.”
Brown’s answer seems simple, but it’s profound for anyone who has taken antiretrovirals, switched regimens, and worried about viral loads, T-cell counts, and opportunistic infections. Maybe it gives a glimpse into what life would look like for many people, once we have an HIV cure—a sense of relief, breathing room. And that, alone, is amazing. That’s why these days, Brown’s attention is focused on making an HIV cure—or cures—a reality for everybody in need of one.
Timothy Ray Brown has been working on strategies to make that possible. In 2012, he founded the Timothy Ray AIDS Foundation. He also cofounded Cure for AIDS Coalition together with Dave Purdy, an HIV/AIDS activist who also serves as the Coalition’s CEO. (Recently, the Timothy Ray AIDS Foundation website has become one and the same with the Cure for AIDS Coalition, cureaidsreport.org.)
“Originally we were working under the World AIDS Institute,” Purdy explains. “Then we quickly realized that the missions were different, and that we needed to focus all our attention on a cure for a lot of different reasons. So we thought about starting a foundation, and we’ve since decided to create the Cure for AIDS Coalition.”
It feels very good not [having] to take the medication for HIV,” Brown says. “Not to worry about that. I don’t mean to say that it controlled my life, because that was something I’d do every day, I’d take my medications, but it felt very good not to have to do that anymoreAs mentioned on its website, “The Cure for AIDS Coalition is a first of its kind AIDS organization in the world, a public benefit corporation whose sole mission is to find a cure for HIV and AIDS.…The Cure for AIDS Coalition seeks to unite, educate, raise awareness and advocate for full funding for research for a Cure for AIDS. It will be made up of a network of organizations, corporations, institutions, governments, foundations and individuals all dedicated to the goal of finding a cure for HIV.”
Brown has become a tireless advocate, bringing his message as a keynote speaker at conferences, colleges, and foundations, and has been featured in an episode of the HBO documentary, VICE. He went straight to the top to make cure research a priority by writing a letter to President Obama. In his letter, which is posted on the Cure for AIDS Report website, Brown mentions that, since he was cured in 2007, he has “given [his] mind, body and soul over to finding a cure for HIV.” The experience has taken him on a journey not only through being cured of HIV, but also through a more spiritual, transformational journey that, at least in part, turned him into the symbol of hope he is today, not only when it comes to an HIV cure, but also a cure for cancer.
It turns out that Brown and Purdy did hear back from (now former) White House AIDS Czar, Douglas Brooks, saying that Brown will be receiving a letter from President Obama. “For the record,” Purdy says, “that’s the first time Timothy [Ray Brown] has actually written a letter like that; actually, anything like that. It’s kind of a big deal for us.”
It seems that working together, Brown and Purdy have helped find solutions to problems seemingly impossible to solve. “Working together [scientists, activists, researchers],” Purdy says, “is a very important part of making a cure come to fruition. And thinking outside the box,” he adds. “[Try] everything. And if it doesn’t work out then [try something else]. Don’t give up!” The Coalition offers primers on the need for a cure, research strategies, and the obstacles (scientific, cultural, and political) involved. Researchers are currently looking at two types of cures: a sterilizing cure (in which no trace of HIV can be found in the body, as in Timothy’s case) and a functional cure (in which HIV remains in the body, but the individual no longer has to take HIV meds).
Dr. Hütter has tried to replicate the Berlin Patient’s success story with other patients. It did not work out.
Doctors in the U.S. have tried similar potential HIV cures, to no avail. There’s the case of the two Boston Patients, who received bone marrow transplants from donors, in 2008 and 2010, respectively. Unlike the Berlin Patient, the Boston Patients received stem cells from donors who were not immune to HIV. Also, the patients were not taken off anti-HIV medications after the transplant procedure. While their doctors, HIV specialists Timothy Henrich and Daniel Kuritzkes, based in Boston, Massachusetts, made the announcement that their patients were free of HIV, they also mentioned that it was too soon to call it a cure. It was too soon. The virus rebounded, months after the patients were taken off their anti-HIV medications.
Then there’s the case of the Mississippi toddler. The little girl was started on anti-HIV drugs right after birth, and the child appeared to be virus-free for the following two years. Her pediatrician, Dr. Hannah Gay, at the University of Mississippi Medical Center, in Jackson, Mississippi, later mentioned that HIV must have been dormant in the girl’s body for all those two years.
“In general, I think that we’ve learned a lot from when I was a patient, from the Boston Patients [for example],” Brown says.
In spite of the setbacks, scientists are not giving up. There are promises, but also obstacles along the way. “I’ve talked with one of the researchers working with a doctor performing these [procedures], and, unfortunately, it’s hard to find recipients,” Brown says. He explains that these procedures could be risky. Meanwhile, patients are doing well on their medications. So, there’s sometimes little incentive for them to enroll in studies, to help find a cure once and for all.
“And that’s what we’re trying to do as well,” Purdy adds. “If you look on our Cure AIDS Report website, we listed clinical trials [available across the country and around the world] for people who might be interested. Because a cure can come from different angles and different parts of the world.”
Purdy continues, “It seems like, back in the day, when people were dying [of AIDS-related causes], they were [more willing] to take risks. I think people are [still] willing to take risks [when it comes to participating in clinical trials to possibly find a cure for HIV.] I hope that people realize that the research benefits them.”
Purdy notes, “I guess, arguing about vaccine versus cure, we know that cure gets so much attention, especially from the media. Timothy [Ray Brown] realized that right from the beginning. We actually support all avenues. Interestingly enough, the vaccine [research] group has started to merge somewhat with the cure group. [We] think it’s because they can share knowledge and resources. And they can help each other. Because I think everybody agrees that a vaccine is going to be critical for the long term. Treatment as prevention is critical as well.”
Brown tends to believe that the cure strategy involving elimination or derailing of CCR5 protein might be a way to go. “I’m thinking that that’s going to be one of the keys to getting rid of HIV,” he says, while explaining that he’s also open to considering other strategies.
“I’m proof that HIV can be cured,” Timothy Ray Brown says. “But we have to find out better ways to do it, because nobody wants to go through what I went through, [but] if you have tested positive, don’t give up! You can do very well on medications.”
And, he adds, ever the caring advocate: “Also, and I’m saying this as a former smoker, people living with HIV live a usual lifespan, unless they smoke!”
Find out more about Timothy Ray Brown and his work at www.cureaidsreport.org.
Alina Oswald is Arts Editor of A&U. An accomplished photographer, she is also the author of Journeys Through Darkness, a biography of artist Kurt Weston. Visit her website at: www.alinaoswald.com.
Read more articles from A&U, here.
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