Timothy Ray Brown, the so-called Berlin patient and until this week the only person to have been cured of HIV, says he celebrates four birthdays every year.
He celebrates his sobriety with a cake, he celebrates his real birthday with a cake, and he will never forget to celebrate both his cancer and HIV cures – this year also, with cake.
Before he contracted HIV, he had a substance abuse problem and to this day he regularly attends Alcoholics Anonymous (AA) meetings, adding that he now takes nothing that would “affect his brain”.
“I have sobriety birthday. If I reach the next year [sober] I get a cake. I get a cake to celebrate my [actual] birthday. I celebrate my leukaemia and HIV cure on 7 February. This year, I did actually get a cake for that,” he told Times Select in a phone interview from the Conference on Retroviruses and Opportunistic Diseases (CROI) in Seattle, US.
A new family of HIV-cured people
This week, he says, he became part of a new family when it was announced that two more HIV-positive men who had suffered from cancer after receiving stem cell transplants from donors with a genetic defect, no longer appear to have the virus in their bodies. “I am very excited to have other people join my family.”
Brown and the two men all had blood cancer and received stem cell donations from people with a rare gene defect called CCR5delta32, making them resistant to HIV.
Brown has been cancer- and HIV-free for 12 years. Being cured of two diseases made him an Aids activist, he said.
The two new successful transplants were announced at CROI this week.
The “London patient” has stopped antiretroviral treatment for 18 months, and the second patient, from Dusseldorf in Germany, has not taken ARVs for three-and-a-half months. The virus has not returned in either of them.
Except for Brown, 18 months is the longest an adult has been free of HIV.
“I think at this point it is almost clear that the London patient is cured, cause I think it has been long enough to prevent the disease [rebounding],” said Brown, who added he hoped to meet the London patient.
He had met “the doctor who cured him and his social worker” at CROI last week and both said he wanted to meet Brown.
“I had hoped he would come to the conference.”
Brown, whose partner’s name is Tim, said he loved London and would like to travel there to meet the new man likely cured of HIV.
Initially, Brown was called the Berlin patient because he had been treated in Germany and chose to be anonymous while he recovered from cancer treatment, the stem cell transplant and intensive radiation.
But once he was well, he decided to release his name.
“I decided, as the only person cured of HIV, I wanted to share my good fortune with as many people as possible.”
‘This is not a cure’
He said it was important to understand what was announced this week was not a practical cure.
“What is really important is this is not the cure. Stem cell transplants are very dangerous. I nearly died.
“No one should rush out to try to get a stem cell transplant.”
Scientists believe the three successful stem cell transplants may teach them what they need to know to reach a cure and remove the HI virus from the body.
But, Brown said he had come across resistance to a cure in some HIV communities.
At a discussion about HIV in the US, about 60% of participants told him they didn’t want a cure. He said he thought it was because they did not to want lose their disability grants, since some hadn’t worked “for years”. Being HIV positive was “part of their identity”.
How Brown contracted HIV
A sexual partner in the 1990s, who had tested HIV-positive, told Brown he needed to be tested himself.
Now, many years later, he told Brown he did not understand why he was fighting for a cure. “It kind of hurt me. [But then] I looked at his situation. I kind of understand now.
“At this point, he works at major international bank in Germany and because he has the disability of being HIV-positive,  he doesn’t have to go to work. He can work at home. He has got it made, basically.”
Brown was diagnosed positive in 1995 and was given AZT, the first drug to treat the disease.
“They gave people massive doses of AZT.  People died from the toxicity. They gave me a very small dose of it. That is really why I didn’t die from that.”
Brown urged South Africans to get tested for HIV.
“People do not have to be ashamed of having HIV. It is just another illness that can be treated. Get tested. If you test positive go and get medication. You can live a normal life ... Medication today is very good and I don’t want you to die.”