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Babies could be key to HIV cure

Timothy Ray Brown the Berlin Patient, HIV, AIDS, Washington Blade photo by Michael Key

Timothy Ray Brown, the first person ever cured of HIV, is working with other patients seeking a cure. (Blade photo by Michael Key)

Last week, doctors in Minnesota performed a first-ever procedure on a young boy that could lead to finding a cure for both HIV and leukemia. This case is similar to that of Timothy Ray Brown (also known as “the Berlin Patient”), a founder of our organizations, the Timothy Ray Brown Foundation and the World AIDS Institute. If successful, it will be the first time a person has been cured of HIV as a direct result of an umbilical cord blood transplant.

Both procedures used blood cells from a human donor with CCR5 Delta 32 negative, a genetic deformity; persons born with the abnormality are naturally resistant to HIV. Timothy’s procedure, which was performed in Berlin, used stem cells instead of umbilical cord cells.

Fortunately, the German health care system supports access to multiple matches of CCR5 Delta 32 negative stem cell donors. In the case of the Minnesota child, because no CCR5 Delta 32 negative stem cell procedure has yet to be tried in the United States, the medical team used an umbilical cord blood match.

An hour before the boy’s cord blood transplant procedure, Timothy and I had an emotional discussion with Dr. John Wagner, head of the medical team at the University of Minnesota medical center.  Dr. Wagner and Timothy discussed the differences and similarities in the procedures, as well as a sad truth: In the United States, doctors face near-insurmountable barriers to obtaining Food and Drug Administration clearance for such groundbreaking procedures.

The use of umbilical cord blood is still controversial in this country, with most of the opposition fueled by politics and religion. Today, Dr. Wagner told us, there is a very small amount of umbilical cord blood being released or available for medical procedures such as the one performed last week.  His team was permitted access to only a small fraction of cord blood.

What if cord blood were more readily available?  Consider the immediate and long-term impact on all sorts of diseases, beyond leukemia and HIV.

An hour after the procedure was completed, Timothy called the young boy to wish him all the success in the world for a good and speedy recovery. “When I had my procedure done, I got caught up in the trap of lying around in my bed in the hospital watching television and not exercising,” Timothy told the boy. “Make sure as soon as you are able, get out of bed and do some exercise, go do what you love, go play some basketball.” Timothy said he could hear the boy’s mother and team of doctors laughing, as they seconded the sound strategy.

Timothy’s procedure has been performed on others in Germany, but none has survived.  “It became almost too much,” Timothy said. “I would receive one phone call after another letting me know another patient who received the same procedure I did had passed away.” In many cases, the leukemia and HIV was just too much for their frail bodies. In all cases, there were multiple stem cell donors available for each patient. But that was in Germany, not here.”

It is unfortunate the United States puts political and religious beliefs over potential life-saving scientific and medical discoveries. We have so much to be proud of in our country as it relates to science and medicine and also much cause for shame. In the case of the boy in Minnesota and Timothy Ray Brown, both could have said no to the groundbreaking procedures.  Instead, they said yes, giving a major push to finding a cure for HIV for everyone.

What is really quite beautiful is the impact of physical hardship on the human spirit — a man and a boy now share virtually the same experience medically, yet it’s also different. One received stem cells from an adult, the other umbilical cord blood from a baby. However in the end, it very well may be that Timothy Ray Brown, the first person ever cured of HIV, now will have more company. More importantly, he has a new friend and a potential new leader who might understand what it’s like to be cured of AIDS.

Dave Purdy is founder and CEO of the World AIDS Institute (worldaidsinstitute.org). Reach him at dpurdy@worldaidsinstitute.org.

26
Apr
2013

The cure for HIV rides a bike

As I watched Timothy Ray Brown mount his new red mountain bike, my parental instincts kicked in. What if he fell or couldn’t stop or hurts himself in some other way? Frightened, I kept visualizing how the media would handle the story: “Timothy Ray Brown, the first person cured of HIV, dies,” they’d say, “but not from HIV or cancer or his chemotherapy, stem cell transplant or other invasive treatments. Rather, he fell off his bicycle and succumbed to a severe head injury.”

The answer for an HIV cure for the world lies within Timothy, somewhere. I’m aware some may criticize Timothy’s riding a bike or going skydiving, bungee jumping, even driving a car.  Yes, he’s the first person to be cured of the world’s most unrelenting disease, but what’s even more important is he’s a human being who wants to live life to its fullest.

“The Berlin Patient” is the name the media gave Brown. At the time, he was living in Berlin and wished to remain anonymous. Why the anonymity? Because Timothy couldn’t believe it was true, he told us. He feared his cure was temporary and the HIV would return. After all, he said, it was only a year or so earlier that his leukemia had resurfaced. Of course, eventually the media learned his name.

On Feb. 20, Timothy celebrates the sixth anniversary of the procedure that led to his cure.

As many of you know, I’m the founder and Chad Johnson is the co-founder of the World AIDS Institute (WAI), established to document and preserve the global history of AIDS, inspire action today to improve the lives of people living with HIV and AIDS (and their family, friends, and communities) and strengthen the spectrum of innovative initiatives to find a cure.

Timothy is co-founder of WAI and founder of the Timothy Ray Brown Foundation of WAI that Chad and I helped launch eight months ago. The Timothy Ray Brown Foundation is the world’s first organization in the 31-year history of the AIDS epidemic whose sole mission is to find a cure for HIV.

Let me tell you a story. A few months ago, I was having lunch with Timothy when he said — in a burst of outrage — he wanted to go to the top of the Empire State Building and tell the world about the injustices people living with HIV face on a daily basis. Timothy vowed he would use his energy to make this right.

I told Timothy that I understood his anger and frustration, but felt diluting our message – finding a cure – might be counterproductive. “I think not,” he said, pointing out he had been HIV positive twice as long as he has been cured. Then he looked at me the same way he did months ago when he told me he was launching an organization to find a cure. His plan was to announce it during the 19th International AIDS Conference in Washington, D.C. He asked us to help him.

The day before we were to launch the Timothy Ray Brown Foundation, we hosted a reception with Speaker Nancy Pelosi at the Library of Congress. I remember seeing her aide whisper to her that Timothy was at the other end of the room. It would be the first time they would meet. Immediately, she started toward Timothy. As they met in the middle of the room, she looked him in the eyes and said, “You are miracle. You are a miracle.” Then they embraced.  She held onto him for a long time as if his energy would help heal the wounds of the hundreds of people in her California district who had died from AIDS, many of them her friends.

It is true: Timothy Ray Brown may be a miracle. But he also is a human being. And if he wants to ride his new red mountain bike, he should do it as fast and as far as he wants. Timothy Ray Brown, the first person in the world cured of HIV, wants to live life to the fullest.

Dave Purdy is Founder and CEO of the World AIDS Institute. Reach him at dpurdy@worldaidsinstitute.org.

13
Feb
2013

2012 was a very good year

It was an interesting year in so many ways. Looking back made me realize the first thing I did was accept reaching the age when many people retire. I contemplated that for about 10 minutes before moving on to more relevant thoughts. After all, life was still fun, my job still interesting and writing was still something I enjoy.

Each month of the year brought with it some new events to focus on. Overriding everything was the election. In January, I wondered why we should care what the Iowa caucus results were — and I am still wondering. That was about the same time the pizza guy flamed out over his transgressions with a series of women. The ups and downs of the Republican debates were fascinating in a macabre way, like watching a train wreck is fascinating. Some of the candidates faded faster than others including Tim Pawlenty, Michele Bachmann (not fast enough), Jon Huntsman and Rick Perry. Others like Newt Gingrich and Rick Santorum hung around longer and used the eventual nominee Mitt Romney as a piñata dragging him further to the right all to the eventual benefit of President Obama.

Then there was Foundry United Methodist Church’s fight for LGBT rights within the Methodist Church. While they lost that fight we can all be thankful for the ongoing work of Foundry and their Senior Pastor Dean Snyder. In May, Dr. Robert Spitzer, a leading member of the American Psychological Association, wrote an apology (better late than never) that admitted he was wrong when he authored a study supporting “reparative therapy” for gays. That study harmed unknown numbers of young gay men who were subjected to this phony therapy and still are in some areas.

June brought Pride with its festivals and parades and the knowledge that we now had a president who supported marriage equality and was willing to stand up and tell the world. There was also the decision by the Supreme Court to declare “Obamacare” constitutional. In his statements on the Affordable Care Act as well as other comments Justice Scalia again showed why he should be impeached.

July brought the International AIDS Conference to the United States for the first time in 20 years. There were meetings and talk about how far we have come in the fight against HIV/AIDS and recognition of how far we still had to go. There was the announcement of the first patient, called the “Berlin Patient” who has reportedly been cured and the discussion of spending more money on finding a cure and not just finding a vaccine. Secretary of State Hillary Clinton addressed the conference and to great applause spoke of a generation without AIDS being within reach.

In August we watched the spectacle of the Republican Convention in which they approved a platform clearly more appropriate for the 19th century than the 21st. They highlighted their fight against women and the LGBT community and selected the Romney/Ryan ticket, which proved a colossal mistake.

The election was going fine for the Democrats until the first presidential debate, when President Obama barely showed up. An election thought to be in the bag suddenly became a nail biter for a short while. But those of us who are Nate Silver fans soon understood that President Obama was going to win a second term and do so fairly easily. The bonus was winning marriage referenda in four states and gaining House seats and two Senate seats as well.

All in all, a good year yet it ended with so many things left to be done. Some are easy and can be done with the stroke of a pen like the president signing an executive order to ban discrimination in federal contracting. Others — like setting the nation on a course to fiscal solvency — will take negotiation and perseverance and require our help as we pressure Congress to act.

But at midnight on Dec. 31, as we say goodbye to 2012 and welcome in 2013, let us all drink a toast to the year past and say a prayer and pledge to each other that in the year to come we will keep up the good fight for equality and will do everything in our power to make the world a safer and healthier place for all.

27
Dec
2012