Timothy Ray Brown Interview
Timothy Ray Brown, also known as “The Berlin Patient” has been cured from HIV by 2 bone marrow transplants from a donor with a CCR5 delta 32 deletion (Hütter G et al, N Engl J Med 2009 ; 360(7):692-8 and Allers K et al, Blood 2011;117(10): 2791-9. Epub 2010 Dec 8). These procedures were justified by the occurrence of an acute leukemia in 2006, which relapsed after chemotherapy. Today, he remains free of HIV without taking antiretrovirals, and the most sophisticated tests cannot find any trace of HIV in his body. He kindly agreed to talk about his unique experience.
Alain Lafeuillade: in 15 years, starting in 1995, you went through AZT therapy, old and new antiretroviral combos, and finally became the only man in the world to be cured from HIV: what is your outlook about this incredible journey?
Timothy Ray Brown: I am very grateful that I no longer have to take my HIV medication and was slowly weaned off of the anti-rejection medication that I had to take as well. I am very pleased that my cure can be used as a catalyst to work for a universal cure of HIV as well as other diseases not necessarily related to HIV like Parkinson’s and dementia. My journey was not easy. It came very close to killing me several times. I would not recommend it as a general cure of HIV. It is important to me that more funds and energy of doctors and medical scientists be dedicated to establishing a cure of this horrible disease. I was just extremely lucky.
AL: although it is admitted that the procedure you received cannot be applied to other patients without malignancies, it was the “proof of concept” that we can rid the body from HIV, and it renewed scientific hope for a cure. You are -for sure- an advocate of increased research funding to find a cure, could we say that you became an activist and what kind of action do you plan?
TRB: I am an advocate and now an activist promoting increased funding to find a cure. I plan my own website, an autobiographical book and travel making speeches dedicated to that cause.
AL: what is your current life now that you moved back to the USA? What are the advantages and disadvantages of the Health care system compared to Europe? Are you still regularly investigated for HIV infection and how?
TRB: Actually, Germany took much better care of me as a foreign national than the USA has done. In Germany, I was able to keep a decent apartment which the state paid for due to my disability. Here I have not yet gotten permanent housing and am currently living in a single room in a run-down residential hotel. I receive little help by the Social Security Administration. It was extremely difficult to get the little that I finally received. In Germany even as a non-citizen, I continued to have health care including dental. I was provided with my apartment and other spending money. I am frustrated by the way that I have been treated as a citizen here in the USA. Nevertheless, my health care is good apart from dental. I have a missing tooth. I am pleased with my doctors although it took forever to get physical therapy for an injured shoulder. I continue to be tested for HIV reservoirs in my body. Until now, none have been found.
AL: there is a debate between trying to find a “functional” cure rather than a “sterilizing” cure, what is your opinion about this?
TRB: From what I know about this, I believe that medical scientists should be trying to find a ‘sterilizing’ cure because it is the only way to establish a complete elimination of virus-infected cells. However, I do not feel that I am not yet an expert on this subject.
AL: testing new drug approaches to “purge” the HIV reservoir or to “control” it by gene therapy might have a higher risk than a benefit in patients well stabilized on ART, at least at the beginning. What is your feeling about these ethical issues?
TRB: I feel that people should consult with their doctors and then weigh the risks carefully before they proceed with any treatments to “purge” the HIV reservoir or to “control” it by gene therapy. What I went through was by no means an easy procedure. I think that I would tend to go for taking the risk in order to cured in the end and not have to take ART any longer.
I feel that it is very important that the medical field - ie doctors medical scientists, pharmaceutical companies and government - works together energetically and quickly to enable a universal cure that is affordable even to the developing world and the poor everywhere.
AL: is there anything else you would like to add?
TRB: I feel that it is very important that the medical field - ie doctors medical scientists, pharmaceutical companies and government - works together energetically and quickly to enable a universal cure that is affordable even to the developing world and the poor everywhere.
Key words: Berlin HIV patient, Berlin patient, HIV cure, HIV eradication, toward an HIV cure