Timothy Ray Brown is the first and only person in the world to be cured of HIV. There are some fascinating parts to his story you may not know, but first, here’s a little background.
In 2007, Timothy was a gravely ill leukemia patient living in Berlin (after his cure he was famously known as “the Berlin patient” before he came forward in 2011 and identified himself). Timothy was also HIV-positive, but at the time his HIV was the least of his worries.
When Timothy needed a stem cell transplant to treat his leukemia, doctors located a donor who had a rare gene mutation known as CCR5, which makes human cells immune to HIV. And that is the most scientific sentence you will read on Queerty all week.
By sheer good luck, doctors found a stem cell donor for Timothy who had the CCR5 mutation. The result of the stem cell transplant? Timothy’s immune system was replaced with a brand new immune system minus the HIV, and to this day he remains the only person to be cured.
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“The HIV is gone and it is gone for good,” Timothy, who today lives in Palm Springs, told Queerty. “And I am also cancer free. Two cures. I am really fortunate and blessed.”
His cure is now part of the scientific record, but there are more interesting tidbits to learn about this courageous gay man who risked it all and found himself making history in the process.
Here are five things about Timothy Ray Brown that you may not know:
1. Timothy still identifies as part of the HIV community.
He may be the only person on earth who can say, “I used to have HIV,” but his heart is still very much connected to those living with the virus. He doesn’t care to engage in the sometimes nasty sexual politics between guys who are HIV-positive and those who are negative.
“Remember, I was HIV-positive twice as long as I have been cured,” Timothy said. “I still consider myself part of the HIV community. I wouldn’t have it any other way.”
In fact, this November Timothy is embarking on the HIV Cruise Retreat (“the Poz Cruise”) to sail the Mexican Riviera with hundreds of people living with HIV and their allies. Between days at the beach and excursions in tropical cities, Timothy will share his story during a special presentation and discuss the latest in HIV cure research.
2. Timothy initially didn’t want the leukemia treatment that eventually cured his HIV.
“I said no to the transplant,” Timothy said, “thinking that it would not be necessary were the leukemia to remain in remission (which it was at the time). I did not need to be a guinea pig and risk my life receiving a transplant that might kill me.” When his leukemia returned, Timothy had no choice but to go through with it.
Neither Timothy nor his doctors had any idea that the stem cell transplant using a donor with the CCR5 mutation might lead to an historic breakthrough. It was a shot in the dark that miraculously hit the target.
3. The treatment Timothy received nearly killed him. Twice.
Folks, don’t try this at home. Timothy’s HIV cure happened in extreme and dangerous circumstances. Timothy endured chemotherapy, the stem cell transplant, and got pneumonia and sepsis infections in the process. His recovery from the stem cell transplant was exhausting and life-threatening.
The physician responsible for Timothy’s cure, Dr. Gero Huetter, eventually admitted he had given his patient only a 5 percent chance of survival. “Whatever,” says the good-humored Timothy now. “Math wasn’t my favorite subject anyway.”
4. There is a little bit of Timothy in vials all over the world.
In laboratories around the globe, millions of drops of Timothy’s blood, DNA and tissue samples are being studied.
“I love to give researchers and scientists a hard time about how they know me intimately,” Timothy said. “If only they knew how many pokes, prodding, surgeries and pain I have endured, perhaps they would at least buy me dinner. But it’s all worth it in the spirit of finding a cure for AIDS.”
5. Helping to find a cure that works for everyone has become Timothy’s mission in life.
Imagine winning the lottery and then using your fortune to help other people. That is the mindset that has driven Timothy since he was cured.
In 2013, Timothy co-founded the Cure for AIDS Coalition with Dave Purdy, and has used his notoriety to keep the search for a cure at the forefront of HIV research. “I know in my heart and soul that I will not be the only one cured of AIDS,” Timothy said. “We are committed to helping end this dreaded disease once and for all.”
While being the first person to be cured of HIV assures this gracious gay man a place in history, it is really what Timothy has done since then that makes him a genuine hero.
ted72
Why did GW Bush ban stem cells again?
polarisfashion
@ted72: Because he is an idiot that listens to the religious right who still thinks that science is nothing more than witchcraft.
Paul Nadolski
The same people who opposed stem cell research are now arguing that vaccinating your kids causes autism/gayness/mental disorders/etc. And today I read that one of them thinks restaurant workers washing their hands after going to the bathroom is unnecessary (eew!).
Desert Boy
Let’s hope the 21st century sees a cure for HIV/AIDS.
DarkZephyr
Wow, what an amazing story! I didn’t actually know about this guy. Its nice that he is working so hard to help those who still have HIV. What a great guy!
Merv
Blessed? Screw the doctors and scientists who worked their asses off! Let’s ignore them and thank a mythical being.
Charlie in Charge
@Merv: Why not both?
Xzamilio
@Charlie in Charge: Why not the ones we KNOW are real? And WHICH mythical being? There’s a bunch of them in the land of “Faith and no evidence”
acutepbos
Hey MERV: Why don’t you just chill? I’m not religious by any means, but the word “blessed” doesn’t automatically pay homage to a God any more than the word “marriage” does.
Tracy Pope
Yea Science!
@Merv: @Xzamilio: The word “Blessed” as having a strictly religious or spiritual connotation is kind of dated. It’s listed in dictionaries as also having a meaning related to fortunate and gratitude. In that context he was indeed blessed. The doctors were trying to cure the Leukemia, not the HIV.
Stache99
@ted72: Conservative’s generally don’t give a shit. That is until it hits home for them. Just ask Nancy Reagan who opposed him.
Stache99
@Desert Boy: With 85 more years to go in the 21st Century I think it’s a really good bet that we will. Every 10 years we’ve seen major advances. I’d say in the next 20 will see a cure or something close to.
colorme2500
Am i the only one who saw that there already is a cure?
The cure is called: stem cell transplantation with CCR5.
So why not use that?
Hmm!
Derek Williams
Fantastic story!
o.codone
it is certainly a challenge for science to find a way to integrate CCR5 into HIV treatments. I bet if you fast forward 20 years it will either BE the cure or it will be the center from which all other treatments are derived. In answer to the question as to why Bush outlawed stem cell research it all had to do with abortion and taking cells from a fetus which could not possible give consent, much like Mengele did to the Jews, so it was considered ghoulish and a violation of international law and of accepted medical ethics of the day. Now, gentlemen, please don’t jump on ME or personalize my comment or call me an azzhole, teabagger, right wing nut, or any of the usual vitriolic jargon that is used to villainize people you disagree with. It is wholly unnecessary. I’m just stating the fact(s). Don’t confuse the content of my comment with my opinion or my political belief(s).
vive
@o.codone: “much like Mengele did to the Jews”
Oh no grldfriend, you didn’t! Taking stem cells from discarded fetuses are NOTHING like what Mengele did to the Jews. Did Bush say that or is that your own comparison? Because there is absolutely no comparison in a million years.
vive
@colorme2500: “The cure is called: stem cell transplantation with CCR5.
So why not use that?”
Stem cell transplants are done every day. For blood diseases at least. They are called bone marrow transplants, as in the case this article is about. They are extremely dangerous – the survival rate for a transplant from an unrelated person (as this would have to be in most cases) is about 20%.
In other words, your chance of dying is about 80% (over three years after the transplant).
It requires strong radiation to kill your own blood marrow (otherwise your immune system will attack the transplanted stem cells), a subsequent period during which you effectively have no immune system and can die from all the little daily infections we deal with daily, and then the new immune system can attack your own organs. The radiation required initially can also kill you from cancer later.
Dan P
@ted72: Just to be clear, Bush did not ban stem cell research. He stopped federal funding for new stem cells obtained from embryos because it required aborted fetuses. The existing 70+ stem cell lines still qualified for federal funding. It was sort of a pander to the anti-abortionists. However, it is certainly safe to say he didn’t help research any because of the 70+ lines only about 21 were useful and still qualified for federal funding but they were not sufficiently diverse genetically for many research purposes. I’m not criticizing your comment because “ban” I think is just a short hand way of saying what he functionally did.
colorme2500
@o.codone: Thanks for the answer.
@vive: Even though the survival rate only is 20%, i still don’t get why people isn’t offered the treatment.
That way they can decide if they want to try it or not.
It would give the reasearchers a chance to collect more data and that way maybe find a less risky cure.
Maybe find a way to protect them while they don’t have a immune system and maybe find a way to prevent new system for attacking your organs.
Some of that research might help when it comes to organ transplantation and cancer treatment as well.
Personally, i would love to be a test person if i had HIV.
Who wouldn’t?
Nothing to lose and everything to gain.
Life with drugs, long term side effects and possible early death VS. Life without drugs, short term side effects and possible death.
musctop
@o.codone: You’re not stating ANY fact there, sugar–do some homework before you make such ridiculous claims. Most stem cells are cultured from umbilical cords, not dead fetuses, and it was NEVER considered a “violation of international law.” I couldn’t be more embarrassed for you.
Random
@colorme2500:
The prognosis for people with a suppressed viral load is very good these days. In fact, some groups of people with HIV are actually living longer than those who are negative. Also, side effects of ARVs are usually pretty minimal to non-existent. So in that context, a ‘cure’ with a very low success rate and a high chance of death doesn’t seem very attractive, and very few doctors would want to offer it to their patients unless all other options had been exhausted.
Paco
@o.codone: “it is certainly a challenge for science to find a way to integrate CCR5 into HIV treatments.”
There is a drug that blocks the CCR5 receptor called Maraviroc. It is classed as an entry inhibitor that binds to the CCR5 receptor on the cell’s surface, preventing HIV from entering human T-cells and macrophages.
AlliterationAddict
@ted72: These are Hematopoietic Stem Cells, which are entirely different from the Embryonic Stem Cells that the Bush administration issued a moratorium against. And doctors have been performing transplants with Hematopoietic stem cells since the 60s. The Bush ban was still idiotic, but I thought I should clear up the medicine involved here.
AlliterationAddict
@colorme2500: There are two reasons. 1) CCR5 blood is extremely rare and therefore the donor supply is inadequate. 2) Bone Marrow Transplants are extremely risky and have a very high mortality rate, to the extent that they are rarely even used to treat aggressive Leukemias, let alone HIV, a disease that with modern medical care has a relatively good prognosis.
AlliterationAddict
@colorme2500: There’s tons of research that has already been done into improving the prognosis of patients receiving marrow transplants. After all, it has already been used as a treatment for aggressive forms of Leukemia for over fifty years now.
But it isn’t a viable treatment for HIV, at least not currently. The mortality rate of bone marrow transplantation is significantly higher than that of HIV. And the reality is that transplant recipients experience a wide range of side effects and often must remain on immunosuppressant drugs for the rest of their lives. It makes no rational sense to administer a treatment that is worse for the patient than the underlying medical problem. Honestly, a doctor who offers to perform a bone marrow transplant to treat a standard HIV case would arguably be guilty of medical malpractice. It would be like amputating somebody’s arm to treat a second-degree burn.
tranquilfinger
I love how Queerty fact-checks every article before they post them. CCR5 is the name of the receptors on the white blood cells that HIV attaches too, not the name of the mutation that HIV immune people have. CCR5-?32 is the name of the mutation….. it takes 20 seconds, and a visit to wikipedia to accomplish said fact checking…. #facepalm
http://en.wikipedia.org/wiki/CCR5
Mark
@tranquilfinger: Rather than rely on the bastion of accuracy that is Wikipedia, we relied upon the many HIV cure research scientists, and Timothy Brown himself, who use “CCR5 mutation” as a generic reference to this genetic disposition. But thanks for your additional insights! #TheMoreYouKnow
1EqualityUSA
I love this story.
colorme2500
@AlliterationAddict: Seriously, i still don’t get it.
How hard can it be for people to see that they will NEVER find a cure if they just scrap something that is proven to be the only cure (so far), just because the survival rate is too low.
The only way to get the survival rate up is by testing it, find out were it goes wrong, do some research, try to fix that and try the cure again with the new knowledge.
Once peopel thought the planet was flat, a bit more research showed it was round, but wait it didn’t stop there, even more research showed that it wasn’t completely round only very close to being round.
If they had stopped their research after they found out that the World was round we wouldn’t know that it was only close to being round.
We didn’t stop building cars just because some died in an car accident, no we made more research to make the safer.
We didn’t stop trying to walk when we were kids just because we fell and got hurt, no we did some research, learned that balance way the key and tryed walking again.
They once said that fruit was healthy and that we should eat as much as possible, later research showed that too much fruit was unhealthy.
New research has shown that milk is somehow unhealthy, but only for women.
The list goes on and on and on and on……………..
It’s humane nature, we do the research and try again.
But i guess something or someone is keeping us for doing what we were born to do and what we do best when it comes to health in general.
I’m not saying what or who it is, because i really don’t know, it’s just a feeling i have.
Random
@colorme2500: I’m not sure exactly why you ‘don’t get it’, because it’s been made quite clear why this particular treatment isn’t scaleable. There is, however, lots of other research ongoing into potential HIV cures and treatments which you can easily research on Google.
colorme2500
@Random: Yeah i know that there is lots of other ongoing research.
However, none of them has cured HIV before and properly never will.
They should stick to what they know works and make that work even better.
All that other stuff is just a waste of time and Money.
Random
@colorme2500: ”All that other stuff is just a waste of time and Money.”
And you *know* this because…? Best leave the science to the scientists, eh?
AlliterationAddict
@colorme2500: Okay, look. Here is how an Hematopoietic Stem Cell Transplant works. First, you irradiate the bone marrow and use chemotherapy to kill all of the white blood cells in the patient’s native immune system. Then you introduce immature white blood cells (aka Hematopoeietic Stem Cells) from the donor to the patient’s blood stream. These colonize the bone marrow and effectively set up a new immune system. But as I’ve explained before, there risk factor associated with this therapy is extremely high. And unless the graft tissue has the CCR5 Mutation, for which there is a grossly inadequate donor supply, then the HIV virus will simply attack the new immune system and you’ll be right back where you started. So this therapy is not scaleable to the population of HIV infected, nor does it provide a higher survivability than existing treatment methods. Now, there are lots of research studies underway to improve the mortality figures of these types of transplants. But they are being carried out on patients who have terminal Leukemias, because they would otherwise die if they don’t receive this type of treatment. So I agree that we should carry out further research into Hematopoietic Stem Cells, and there certainly have been some exciting developments recently (especially in the area of synthetic blood), but it doesn’t make sense to test these therapies on a population that neither needs nor will benefit from it. And while it might seem less ‘sexy’ than blood therapies and stem cell grafts, the reality is that reducing transmission rates and prophylactics have far more potential in terms of the long-term reduction in morbidity across the general population.
colorme2500
@Random: Has it cured anyone?
No, that’s why.
Random
@colorme2500: So what are your credentials for assuming you know better than scientists working in the field?
It’s far better that a range of possibilities continue to be investigated and researched, rather than narrowing a potential cure down to just one approach in the event that that ultimately ends up leading nowhere.
colorme2500
@Random: I’m actually studying to become a scientist.
It is ok to put your eggs in different baskets, as long as you put most of your eggs in the basket that has already shown to be a cure instead of completely dismissing it because of a Little risk.
Random
@colorme2500: Then you should know there have been *many* false dawns in the search for an HIV cure. Any cure will have to be scaleable, and as has already been pointed out, in its current form, the one mentioned above isn’t. There are, however, other forms of gene therapy being investigated, which may yet to prove to be successful. Or not. But then you should know that if you’re ‘studying to become a scientist’.
colorme2500
@Random: I do know all that, but that doesn’t change my mind.
My main focus would still be on that and trying to somehow make it perfect and without or at least with as little risk as possible.
I’m still sure that the cure is already found, it just need some adjustments to be perfect.
On the cancer front however, things are way worse, that is the area i will be spending all my time in.
But i really wish i could split my body up and work in both.
Anyway, let’s just agree to disagree and hope that the cure is just around the corner.
Oh, and please remember that all medicine is chemotherapy, so always think twice before filling your body any of that.
Always ASK, ASK, ASK!!
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