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Badilisha Lugha KISWAHILI

`My dream is to say `we`re cured` of HIV/Aids`

1st August 2012
Timothy Ray Brown

Correspondent GERALD KITABU recently in Washington DC talked to TIMOTHY RAY BROWN of Seattle, a man said to have been cured of HIV/AIDS. Brown gives his testimony:

“MY mother named me Timothy Ray Brown. The media re-named me ‘The Berlin Patient.’ I am the man who once had HIV.

I don’t make this statement as an empty boast. To be honest, I don’t think I fully believed it until the New England Journal of Medicine published the case report about me in February 2009, almost two years after I got cured. There’s nothing like having a respected medical journal talking about you to drive home a point. Since being cured I have mostly gone on quietly with my life. Some of you might think I would’ve shouted it from the rooftops! I’ve always been a pretty private person so I was initially satisfied with just being cured. It wasn’t until I looked at the bigger picture that I realised that I needed to tell my story. By sharing it, I hope that I can bring some new optimism to the fight against HIV.

So, how does a man from Seattle, Washington, come to be identified with a medical milestone in a city half a world away from his birthplace? I was attending school in Berlin in 1995 when I tested positive for HIV. My reaction was like that of many others who were diagnosed at the time. I was terrified. I knew people who were struggling with the disease. Some of my friends had already died from it. I don’t think I’d ever felt as alone as I did at that moment. It didn’t help matters any that a friend told me that I probably only had a couple of years to live. At that time most of us viewed an HIV diagnosis as a death sentence. Cure was not a topic for discussion. I just wanted to survive.

If you are familiar with the history of HIV, you know that the following year brought a new treatment that started to hold the disease in check for many of us. Combination antiretroviral therapy seemed like a miracle in 1996. Really sick people got better; people looked healthier. Over time we realized that many of us were living longer. I knew that I still had a deadly disease but death didn’t hover quite so near. I came to believe that I would remain healthy and live a pretty normal life.

The 11 years were pretty uneventful. Germany’s universal healthcare system provided me treatment that most people in the world didn’t have. I was also lucky that I mostly tolerated my HIV medications. I got used to the idea of a lifetime of pills. The clinics in Berlin allowed me to move HIV to a back burner. My story became commonplace for an HIV patient with access to healthcare.

It wasn’t until 2006 when progressive fatigue resulted in a referral to an oncologist. A bone marrow biopsy showed that I had acute myeloid leukemia. You didn’t have to be a specialist to know that this was bad news. Before I could spend much time wrestling with my mortality again, I was admitted to the university hospital under the care of oncologist, Dr. Gero Huetter, who started me on standard chemotherapy.

Chemotherapy wanted to remind me that treatment for a deadly disease can be miserable. It mocked me ‘what’ protease inhibitors upset your tummy once? Well get a load of this.” I developed pneumonia early on. I had to stop my third round of chemotherapy half-way through when I developed sepsis. I could’ve died. Fortunately I had some great doctors.

I was released from the hospital. My leukemia appeared to be in remission. But there was concern because I hadn’t been able to complete all of the chemotherapy. Dr. Huetter recommended a little vacation after my treatment, so I took off for Italy. The museums and beaches of Genoa were just what the doctor ordered.

In addition to providing excellent advice, Dr. Huetter had a revolutionary treatment idea. He was aware of the discussions going on in HIV research about something called a CCR5 receptor mutation. The CCR5 receptor allows the HIV virus to attach to the T-cell and subsequently infect the cell, spreading the disease. People without CCR5 appeared resistant to HIV infections. But they are rare: Only one percent of the northern European population is this lucky.

So why am I telling you this? Well, another treatment for leukemia would be to wipe out the cancerous immune system and replace it with healthy stem cells from a donor. Dr. Hutter thought that if a stem cell transplant was necessary, why not use a compatible donor who had the CCR5 mutation? The idea was that if my cancerous, HIV-susceptible immune system was replaced with an HIV resistant line of stem cells, not only would my leukemia be treated but HIV might be cleared from my body.

I thought: A possibility to be rid of cancer and HIV? At the same time?

Who could say “no” to the chance to strike back at a disease that had killed some of my closest friends? Who could say “no” to be part of something so groundbreaking? Who could say “no”? Me, that’s who.I said “no.”

Now, let me put this in perspective. When this was first proposed to me by one of Dr. Hutter’s colleagues, I was still recovering from chemotherapy. I had come close to dying. By comparison my eleven years of HIV treatments had been a cakewalk. And stem cell transplants are very risky procedures. Did I really have to go through this extra hell? Some might call me a difficult patient. That’s not true. I usually follow my doctors’ advice. Remember, I did go to Italy.

In January of 2007 my leukemia returned. Initial attempts at a different chemotherapy were not successful. A stem cell transplant became a viable option. Dr. Huetter screened 67 specimens before he found a compatible donor who also had the CCR5 mutation.

I underwent total body irradiation to wipe out my body’s immune system before receiving the transplant. I last took my HIV medications on the day of my stem cell transplant. The result? There was soon no detectable HIV in my system. My T-cell counts increased. I thrived. I went to the gym. With HIV I had developed wasting syndrome. Without HIV, I developed muscles. I was looking good. I felt good.

Until 2008 when my leukemia returned, not my HIV. Seven months after my stem cell transplant, off HIV medications and I was still without detectable disease. Well, the HIV anyway.

In February 2008 I underwent a second stem cell transplant from the same donor. My recovery from the second transplant was complicated. I became delirious and had to have a brain biopsy done. I have been left with some neurological problems that require ongoing care. My life is far from perfect but it is still my life.

It is now 5 years after my first stem cell transplant. I am still without leukemia, but then that’s not the reason why you are listening to me today. It is that after five years without HIV medications, I still have no trace of HIV in my body. I have been poked and biopsied from head to toe. Samples have been taken of my spinal fluid, anal mucosa, and any other place you doctors can think of to stick a needle. But no virus anywhere.

To quote Dr. Huetter in the December 2, 2010 issue of the medical journal “BLOOD” (and he is talking about me) “it is reasonable to conclude that cure of HIV infection has been achieved in this patient.”

Now I know my treatment is not about to become a common procedure to cure HIV. It is dangerous. It is expensive. But my experience has shown that a cure is possible. After all, I am not an abstract concept. I know that we have not yet achieved our next phase of miracles with HIV: A readily available cure. But there are more researchers now who are willing to focus on a cure, rather than just treatment.

My experience has also shown me the benefits of an effective public health system, and the synergy it can achieve working with academic medicine. I applaud those in the medical field for your dedication and hard work. I encourage them to continue to think outside the box. Remember I am speaking to you today because an oncologist had an idea about treating HIV.

For those burdened by cynicism or battle fatigue from their long fight against HIV, I hope that my experience brings a renewed optimism.

As I finish I would like to share my dream with you. My dream is to not be the man who stands before you and says “I am cured,” but to be the man who stands before you and say “We are cured.”

I am now speaking around the U.S. and overseas to raise awareness so that we can advocate for funding of researchers who are thinking outside the box, like my oncologist in Berlin did.

I am living on a fixed limited income due to the disabilities I have as a result of the leukemia treatment. Any donation you can make will help me continue my work promoting a cure and educating the public about the need for greater urgency for cure research.”

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