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Remembering Timothy Ray Brown, HIV Activist & AML Patient

Remembering Timothy Ray Brown, HIV Activist & AML Patient
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Published on October 19, 2020

HIV Activist and AML Leukemia Patient Leaves a Lasting Legacy

Timothy Ray Brown was the first person in the world to be cured of HIV, the virus that causes AIDS. He became an accidental icon for the AIDS awareness movement and later for the experimental stem cell treatment that helped him enjoy many more years of life. Timothy was dubbed “The Berlin Patient” because of where he lived, but also to preserve his anonymity. He eventually went public with his phenomenal story when he returned to live in the United States in 2010.

Condolences came from all over the globe to share in remembering the man who made medical history. Timothy passed away at age 54 in late September in California, from complications from leukemia. 

“On behalf of all its members and the Governing Council, the International AIDS Society sends its condolences to Timothy’s partner, Tim, and his family and friends,” Adeeba Kamarulzaman, president of the IAS and professor of Medicine and Infectious Diseases at the University of Malaya, said in a statement.“We owe Timothy and his doctor, Gero Hütter, a great deal of gratitude for opening the door for scientists to explore the concept that a cure for HIV is possible.”

Condolences also came in from AmFAR, the Foundation for AIDS Research. “Timothy was a willing participant in, and an outspoken advocate for, HIV cure research. A gentle soul who made history, he will be sorely missed,” read their Twitter post.2

HIV Drug Therapy Curtails AIDS

In 1995, when Timothy was living in Berlin as a translator, he was diagnosed with HIV. He was prescribed antiretroviral therapy, zidovudine (AZT), and shortly thereafter protease inhibitors, which block the function of HIV protease enzymes. He went on with his life and work for several years before his next medical crisis occurred.

Acute Myeloid Leukemia

Timothy began feeling fatigued in 2006, which was unusual for the active bike rider. His doctor tested his blood and learned that he was anemic, low in iron. A few more tests revealed that he had acute myeloid leukemia (AML), a form of blood cancer that affects myeloid cells. In normal bone marrow, myeloid cells eventually become mature blood cells, including certain types of white blood cells, red blood cells and platelets.

AML in patients with HIV is rare, but it does occur. In the general population of the United States, approximately 19,940 new cases of AML are diagnosed annually, according to the American Cancer Society.

After undergoing radiation treatment and several rounds of chemotherapy, Timothy fought a serious infection. He took a break between chemotherapy infusion days and went to Italy on vacation. On his return, the leukemia was in remission, but his doctors wanted to try something else, a stem cell transplant. At first, Timothy said no, because it sounded too risky. But when the leukemia came raging back in 2007, he decided to go for it.

Finding a Stem Cell Transplant Match

More than 200 people were potential matches for Timothy and researchers looked for someone with a specific gene mutation, the CCR5, one that could potentially put HIV into remission. The transplant worked! For the first time in history, a patient was free of HIV through a stem cell transplant. He then faced the challenging task of recovering and getting his immune system to be stronger.

“After three months, HIV was no longer found in my blood. I thrived until the end of the year. I was able to go back to work and return to the gym. I began developing muscles that I had never had before because without HIV I no longer had the wasting syndrome,” Timothy said in an article that he wrote about his experience.3 He continued to have ups and downs with leukemia and tried a second stem cell transplant that paralyzed his legs and required him to relearn to walk. But he continued to be a tireless advocate for research. Timothy persevered and in 2012, during the World AIDS Conference in Washington, DC, he started the Timothy Ray Brown Foundation under the World AIDS Institute. He worked with countless organizations to ensure that HIV will be cured for many and eventually all.

The world lost a powerful voice for patients everywhere when he recently succumbed to AML at age 54. He leaves behind his partner Tim Hoeffgen, and a bevy of friends and colleagues. His legacy and voice will live on in the work and the progress he created for the betterment of people worldwide. 

~Lauren Evoy Davis


1IAS bids sad farewell to Timothy Ray Brown, the “Berlin patient.” IAS.

2amFAR, Twitter.

3Brown TR. I Am the Berlin Patient: A Personal Reflection. AIDS Res Hum Retroviruses. 2015 Jan 1; 31(1): 2–3.

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