Cake, candles and a wish for more HIV cures

Cake, candles and a wish for more HIV cures

An HIV workshop pays tribute to Timothy Ray Brown, whose cure 10 years ago fueled research — and hope

Feb. 13, 2017 | By Mary Engel / Fred Hutch News Service

Timothy Ray Brown celebrates his 10th “birthday,” marking the anniversary of the stem cell transplant that made him the first and so far only person in the world to be cured of the virus that causes AIDS.

Robert Hood / Fred Hutch News Service

“It happened, and it was a hard survival. But I’m here.”

With these words, Timothy Ray Brown blew out 10 candles on a chocolate birthday cake as a room full of researchers, activists and people living with HIV cheered.

A decade has passed since the first of two stem cell transplants cured Brown of both leukemia and HIV, making him the first and so far only person to be cured of the virus that causes AIDS. Sunday’s “birthday” celebration, a tradition among transplant cancer survivors, capped a day-long workshop on HIV cure research on the eve of a major HIV scientific meeting, the annual Conference on Retroviruses and Opportunistic Infections, or CROI, being held in Seattle.

The Seattle-born Brown flew in for the workshop and celebration from Palm Springs, California, where he now lives. Later this week, he’ll mark his original birthday, albeit a little early, with his mother. He turns 51 in March.

Dr. Gero Hütter, the German doctor who cured Brown, could not attend Sunday’s party in Seattle but sent a videotaped greeting. At the time of Brown’s transplant, scientists had considered a cure for HIV so unlikely that it took Hütter a year after first reporting the case to get a paper published in a medical journal.

“I think that you all agree with me that Timothy’s case, as a proof of principle, has changed a lot of the field of HIV research,” Hütter said in the video. “Timothy is the motivation for hundreds of researchers, fundraisers and activists to go forward to the big target that HIV/AIDS can be cured.”

But if Brown’s cure inspired the field of HIV cure research, he is also a reminder of the challenges that remain.

‘The Berlin patient’

Brown was diagnosed with HIV in 1995 in Germany, where he was then living. A year later, he went on antiretroviral therapy, a medical breakthrough that transformed HIV from a death sentence to a manageable disease for those who have access to the drugs. It was not until he developed life-threatening leukemia, and chemotherapy failed, that he needed the stem cell transplant in 2007. That’s when Hütter had the idea of trying to cure both diseases at once by finding a donor with a rare gene mutation that blocks HIV’s entry.

In 2008, the cancer returned and Brown required a second transplant. But he has not taken antiretroviral medicine since the first, and today he still shows no signs of either leukemia or HIV. Identified only as “the Berlin patient” in that first paper and in subsequent media reports, Brown went public in 2010, around the time he returned from Berlin to live in the United States, as a way to call attention to the need for cure research.

No one considers a high-risk, high-cost transplant appropriate for the vast majority of people with HIV who don’t also face a deadly blood cancer. Brown’s experience shows why. The second transplant was especially hard on him and required a brain biopsy that left him with some neurological problems. Years of physical and other therapy have helped resolve that, but his eyesight is poor and the harsh chemotherapy that he underwent as part of his “conditioning” for the transplant has left him with nerve damage and balance problems. His disabilities leave him unable to work.

“Mainly, I just want my life to be normal again,” he said Sunday.

Several attempts to replicate Brown’s cure, with and without an HIV-resistant donor, have failed to show the same results. In many cases, patients died from the transplant or of their cancer before it could be determined whether their HIV was cured. In two patients in Boston who received transplants from donors without the protective mutation, HIV rebounded after several months of remission.

 

At Sunday’s workshop, Fred Hutch’s Dr. Hans-Peter Kiem described how he and other researchers are using Brown’s case as a starting point to find a less harsh and more broadly applicable cure. He and Dr. Keith Jerome co-direct defeatHIV, a Hutch-based HIV cure research group that focuses on cell and gene therapy. Their goal is to genetically engineer resistance in an HIV-infected person’s own blood stem cells rather than, as in Brown’s case, using immune cells from a matched donor with the rare HIV-resistant mutation. The group also is working on using

the immune system to eradicate or at least control HIV, just as immunotherapies are beginning to revolutionize cancer treatment.

DefeatHIV is one of six public-private research groups nationwide funded by the National Institutes of Health to research potential HIV cures.

“I really want to thank Timothy,” Kiem said Sunday. “He really inspired and launched cure research.”

‘You give me hope’

When antiretroviral therapy was first introduced in 1996, hopes were high that, taken long enough, the drugs would not just suppress but cure HIV. These hopes were dashed when researchers found that the virus integrates itself into some of the longest-lived cells in the body, forming reservoirs of latent infection that roar back if medication is stopped.

But according to studies presented Sunday by Dr. Merlin Robb of the U.S. Military HIV Research Program, early treatment with combination antiretroviral therapy is at least a step toward curing HIV. Starting treatment very early after infection can reduce the size of the reservoir in the first place and prevent further damage to the immune system, making any cure developed down the road more likely to be effective, Robb said.

Other topics of discussion at the workshop included how and whether antiretroviral treatment can be safely halted under carefully monitored conditions to test if a cure approach is working (do not try this at home) and whether enough females, from mice to humans, are being enrolled in clinical trials to understand how cure approaches may work differently in different genders (no).

The workshop also focused on the how as well as the what and why of cure research. Laurie Sylla, a member of the defeatHIV community advisory board, which co-sponsored Sunday’s workshop, talked about how trust and transparency are key to HIV cure or any clinical trials.

Trial participants “want to know what are the risks we know about, and what are the risks we may not know?” she said. “And they want to there’s a safety plan. What’s going to happen to me if I participate in this? How quickly are we going to be able to identify that I’m having a bad reaction? And how quickly are you going to do something for me if that happens?”

Pat Migliore, another defeatHIV community advisory board member who has been living with HIV since 1984, recounted a list of fears involved in HIV cure: that long-time survivors like her will be left behind. That postmenopausal women will be left behind. That people of color will be left behind.

“Until there’s a cure for everybody in this world, there’s a cure for nobody,” she said.

As to whether there will be a cure in her lifetime, Migliore, 60, confessed to skepticism.

But, she added, “What gives me hope is seeing all of you. And Timothy, you give me hope.”

A role model, again

For all of the setbacks he has suffered and the disabilities he continues to confront, Brown, an early gay activist who once modeled himself after Boy George, retains his dry sense of humor and wicked sense of fun. He finds purpose in his role as the only member of a singular club and cheerfully embraces his role as symbol of hope.

And on Sunday, he stepped forward to be a role model once again. The only person in the world who has been cured of HIV revealed for the first time publicly that, several years ago, he started taking PrEP — for “pre-exposure prophylaxis — a daily pill that lowers the risk of acquiring HIV. Although Brown’s immune system is now HIV-resistant, he could become reinfected should he be exposed to a less-prevalent strain of HIV that uses a different kind of receptor to enter cells.

Brown recognizes how devastating it would be to people who take hope in his cure for him to have HIV again. And if the most famous HIV-free person in the world can be an example to others at risk of contracting HIV to use PrEP, then Brown is up for the task.

As Moses Nsubuga, an HIV activist and musician from Uganda in town for the workshop and CROI, sang a Ugandan birthday song and everyone else gamely joined the chorus, Brown basked in the appreciation and declared he could handle blowing out the 10 candles.

“It’s OK,” he said, before taking a big breath. “It has worked out.”

 

Join the conversation about an HIV cure on our Facebook page. Learn more about HIV/AIDS research at Fred Hutch.

Mary Engel is a staff writer at Fred Hutch. Previously, she covered medicine and health policy for newspapers including the Los Angeles Times, where she contributed to a series that won a Public Service Pulitzer for health care reporting. She also was a fellow at the year-long MIT Knight Science Journalism program. Reach her at mengel@fredhutch.org or follow her on Twitter, @Engel140.

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Conference on Cell and Gene Therapy for HIV Cure 2014

 

WEBSITE
ctg4hivcure2014.org

DATES
August 26-27, 2014

LOCATION
Fred Hutchinson Cancer Research Center
Seattle, WA USA

We are pleased to announce the inaugural Conference on Cell & Gene Therapy for HIV Cure will be held August 26-27, 2014, in Seattle, WA. This meeting is designed to foster scientific collegiality and to continue to build the important scientific collaborations and community relationships that are critical to solving one of the greatest puzzles of global health in human history.

Featured speakers include:

KEYNOTE
Francoise Barre-Sinoussi, PhD
Professor, Institut Pasteur, Paris, France
Research Director at the INSERM, France
2008 Nobel Prize Laureate, Medicine

PLENARIES
Lawrence Corey, MD
President and Director
Fred Hutchinson Cancer Research Center
Lawrence Corey Endowed Chair in Medical Virology
Professor, Laboratory Medicine and Allergy and Infectious Diseases
University of Washington

J. Keith Joung, MD, PhD
Associate Chief of Pathology for Research
The Jim and Ann Orr MGH Research Scholar
Director, Moleculary Pathology Unit
Massachusetts General Hospital
Associate Professor of Pathology
Harvard Medical School

This two-day international conference will be held at the campus of Fred Hutchinson Cancer Research Center in Seattle, WA. The audience will consist of national and international scientific researchers, early investigators, post docs, and graduate students. Registration Scholarships and Travel Grants are available.

Please visit our conference website for more details!

CGT4HIVCure2014.org

defeatHIV CAB Meetings

defeatHIV CAB Info graphics I

2015 defeatHIV CAB Meeting Flyer2015 defeatHIV CAB Meeting Flyer dates

 

 

 

 

 

 

 

 

 

defeatHIV CAB Info graphics II

 

 

 

 

 

 

 

 

 

 

 

 

2015 defeatHIV CAB Meeting Location map

 

Cal Anderson House
400 Broadway
Seattle, WA 98112

RSVP TO: 206-667-5810 or mlouella@fhcrc.org

 

 

 

 

The defeatHIV Community Advisory Board (CAB) invites you to join us for our standing monthly meetings on the 1st Tuesday of each month.

Regular agenda items include reviewing HIV cure news and scientific reports, developing HIV cure educational materials for community engagement, reviewing and advising on defeatHIV clinical trial protocols, and planning for upcoming events.

Please RSVP and join us!

What is a CAB - I

What is a CAB - II

What is a CAB - III

defeatHIV CAB Photo Collage

 

defeatHIV Events: The Word on an HIV Cure

WORD CURE FINAL thumb 3    WORD CURE FINAL thumb 2    WORD CURE FINAL thumb 1b

 

THE WORD ON AN HIV CURE

Tuesday, January 14, 2104
7 to 8:30 PM

MIller Community Center
330 19th Avenue East
(intersection of Thomas and 19th Ave)
Seattle, WA 98112

FOR MORE INFO: 206-667-5810

Facebook Event Page:  THE WORD ON AN HIV CURE in Seattle

The defeatHIV Community Advisory Board (CAB) invites you to join us on Tuesday, January 14th at our next community event; “THE WORD ON AN HIV CURE.”

This evening will be a great way to meet defeatHIV, the scientists & the community members who have come together to support the research into an HIV cure conducted in Seattle at Fred Hutchinson Cancer Research Center.

The event is free, no registration required.  We will have free food and some entertainment to start us of on a good foot.

The two men who lead defeatHIV, Drs. Hans-Peter Kiem and Keith Jerome, will be on hand to reveal their current research and answer your questions on how they plan to create HIV-resistant cells and to ‘snip’ HIV DNA from its hiding places throughout the body.

This research attempts to build on the unique case of Timothy Ray Brown, the first person to be cured of HIV, but to make his HIV cure accessible to many more people using some nontraditional methods.

In addition, we will begin a community conversation around HIV cure research and the necessary roles that only community members could fulfill, which promises to be a discussion you will want to listen to, if not add your own voice to the mix.

What is there for me to talk about in HIV cure research
Some—and by no means all– of the questions we will want to hear your thoughts on during our discussion:

  • How much risk is too much? Some studies offer no chance for direct medical benefit (proof of concept). Others have higher risks.
  • Where do we draw the line in terms of too much risk?
  • How do we accurately speak about cure? Basic concepts are difficult to describe in plain language
  • What does ‘cured’ mean to you, and how can we know it? Proving someone is “cured” could be quite difficult – need for very long follow-up
  • What role does altruism play in deciding to join a cure research study? Some studies must be done in very healthy HIV-positive people
  • Should we even use the word ‘cure’? Recruitment must be ethical and must not overemphasize benefits (even inadvertently). Use the “c”word carefully.
  • At what cost?  A cure could be quite expensive
  • Will anyone be left out? What can we do to ensure this isn’t a future reality? A cure might only work for some people
  • How do we begin to dismantle the media hype or years of myths and false beliefs around a cure for HIV?
  • What effect does hearing about HIV cure research have on decisions around preventing HIV infection?
  • Outside of clinical trials, how else might I get involved?

If we are ever to see a cure for HIV achieved in our lifetimes, we will need every one of us to play a part.

As a group of people from various communities around Seattle, we have gathered to support this local work towards a cure. We are convinced that community voices as educators and advocates are needed now at the start of this journey to ensure that whatever cure may come is accessible to everyone.

Please join us on this journey.

We look forward to seeing you on January 14th.

Publication Spotlight: Hematopoietic-Stem-Cell-Based Gene Therapy for HIV Disease

Hematopoietic-Stem-Cell-Based Gene Therapy for HIV Disease
Cell Stem Cell
Feb 2012
Hans-Peter Kiem, Keith R. Jerome, Steven G. Deeks, Joseph M. McCune

Investigators from defeatHIV and the Delaney AIDS Research Enterprise (DARE), two of the three NIAID Martin Delaney Collaboratories, partner to review HSC-based gene therapy strategies for HIV disease – demonstrating how scientists in the field are uniting in the fight against HIV.

Read | Hematopoietic-Stem-Cell-Based Gene Therapy for HIV Disease
(Journal subscription required)

Video: Targeting Proviral DNA as Therapy for HIV Infection – Keith Jerome – CFAR – Oct 2011

Targeting Proviral DNA as Therapy for HIV Infection
Keith Jerome
CFAR Conference Video
Oct 2011

Dr. Keith Jerome discusses key strategies for targeting latent HIV as a therapy for disease in the University of Washington / Fred Hutchinson Cancer Research Center, Center for AIDS Research (CFAR) seminar series.

From Dr. Jerome:

“Chronic viral infections have plagued humanity for millennia.  Now infections such as HIV are being targeted by new approaches that raise the possibility of their cure.  In this talk, I explain the use of DNA editing enzymes such as zinc finger nucleases and homing endonucleases to disrupt essential viral nucleic acids, or the human genes encoding receptors needed for viral entry.  I also discuss the potential of this approach for other viruses, including hepatitis B virus, herpes simplex virus, and human papillomavirus, and the challenges ahead in bringing this technology into the clinic for therapeutic use.”

View | Targeting Proviral DNA as Therapy for HIV Infection