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In memoriam Timothy Brown

With great sadness we have been informed that Timothy Brown, known as the “Berlin Patient”, has passed away on Tuesday September 29th at 3.00 hours PM PST, due to leukemia.

Stem cell transplantation
Timothy was diagnosed with HIV in 1995. In 2007 he was diagnosed with leukemia when he was living and working in Berlin as a translator. During his stem cell treatments for leukemia, doctors discovered that not only had the leukemia gone into remission, but Timothy’s HIV had been cured. No signs of HIV had been found since.

Earlier this year, the leukemia resurfaced and had spread widely through his body. The past few weeks Timothy received home hospice care in his apartment in Palm Springs, California. His partner, Tim Hoeffgen, has never left his side.

Source of inspiration
Timothy has been and is still a great inspiration for HIV/AIDS patients and scientists for all over the world. He was an active public figure in the HIV/AIDS arena and embodies a shared hope for a practical cure.

Timothy was also the source of inspiration for the IciStem study and was actively involved in the project as member of the community board.

Timothy was very enthusiastic about the two other IciStem patients that have not experienced HIV rebound after treatment interruption. He felt his family of cured persons was extended. Before he deceased Timothy expressed the importance of a cure for all and asked scientists and donors to keep fighting for a cure that works for everyone. He will be genuinely missed.

Our thoughts are with Tim, his family members and loved ones.

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Study supports claim HIV cure

Study supports claim of HIV cure in a second patient. No rebound of HIV in the London Patient who has stopped antiretroviral therapy after a successful stem cell transplantation to treat his hematological disease.

The so-called London Patient (IciStem patient #36) underwent a stem cell transplantation as part of his cancer treatment. The transplanted donor cells had a gene defect (CCR5delta32mutant), which renders these donor cells resistant against most HIV variants. Now, our study shows that 30 months after stopping antiretroviral therapy, no viral rebound has been observed in the London Patient.

This is the longest HIV remission after stem cell transplantation since the Berlin patient, who was the first person cured of HIV. Although traces of HIV were found in the Berlin Patient, HIV never rebounded and he is now celebrating his 13th  anniversary of being cured. The transplanted cells from a CCR5delta32 donor most likely protected his immune system. He also received aggressive chemotherapy, total body irradiation and two stem cell transplants. For over a decade, the HIV field has been puzzled regarding which of these factors were essential for his cure.

Professor Ravi Gupta of the University College London and the University of Cambridge, published a late-breaker abstract at CROI and an article on the London Patient in The Lancet HIV. In absence of a viral rebound 30 months after treatment interruption, several blood, semen, cerebrospinal fluid and tissue samples, including gut, lymph node and rectal tissue, were assessed. Using an arsenal of ultrasensitive techniques low levels of HIV DNA could be detected in lymph node tissue and blood cells, whereas HIV was undetectable in all other samples. Importantly, we demonstrated that the low levels of DNA that could be detected did not represent intact replication competent virus. The HIV DNA traces were also found in the first patient to be cured, the Berlin Patient. Scientists suggest that these remains can be considered as “fossils”, since they are incapable of reproducing the virus.

Dr. Björn Jensen of the Heinrich Heine University in Dusseldorf presented another HIV-infected patient (IciStem patient #19) who received a stem cell transplantation with these special donor cells (CCR5delta32mutant). The Dusseldorf patient interrupted his antiretroviral therapy 14 months ago and no viral rebound has been detected ever since. At CROI, it was demonstrated that no HIV DNA could be detected in blood T-cell subsets and gut biopsies (duodenum, ileum and rectum). In lymph node and gastrointestinal tract tissues traces of HIV DNA were shown using DNA scope. Since all functional assays were negative, it is likely that these traces do not represent replication competent virus. These results are compatible with sustained remission of HIV.


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New York Times: H.I.V. Is Reported Cured in a Second Patient, a Milestone in the Global AIDS Epidemic

Scientists have long tried to duplicate the procedure that led to the first long-term remission 12 years ago. With the so-called London patient, they seem to have succeeded.

For just the second time since the global epidemic began, a patient appears to have been cured of infection with H.I.V., the virus that causes AIDS.

The news comes nearly 12 years to the day after the first patient known to be cured, a feat that researchers have long tried, and failed, to duplicate. The surprise success now confirms that a cure for H.I.V. infection is possible, if difficult, researchers said. Please read the full article here.

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Information for patients - CROI 2019

IciStem investigates systematically the HIV reservoir in people living with  HIV who either had or may get an allogeneic stem cell transplantation. Each patient registered at the IciStem program participates in a local study led by his/her treating physicians. IciStem advises systematic collection of clinical data and blood, tissue and CSF samples before and after the stem cell transplantation. The IciStem consortium contains a network of highly specialized expert laboratories that can perform the most sensitive tests available to date to measure the HIV reservoir and the quality of the immune system.

Despite all the sensitive tests available to date, the only way to evaluate whether the HIV reservoir has been controlled or cleared is to interrupt antiretroviral therapy (ART).  However, ART interruption must only be performed by patients who have been informed about the risk of therapy interruption and have   signed an informed consent. Furthermore, interruption of ART should be performed in a controlled clinical setting with monitoring over time of a possible viral rebound and the ability for scientifically evaluation.

IciStem is very grateful for all participating patients for assisting in the search for a cure. We understand that the news about patients who discontinued therapy and did not experience a viral a rebound thus far is hope giving. We want to emphasize this has been done after thoroughly testing of the HIV reservoir and with strict monitoring

People living with HIV who have received or will receive an allogeneic transplantation and who are interested to be registered to IciStem, may ask their treating physician to contact the IciStem team.

We can imagine that the HIV positive patients who do not have a hematological disease requiring a stem cell transplantation  visiting our website, would like to participate. Unfortunately, stem cell transplantation is an high risk procedure which comes with a high mortality and patients who do not have a hematological disease requiring a transplantation can therefore not be registered. We do hope we can provide knowledge in the nearby future which can translate the results of IciStem to a broader group of people living with HIV.


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Press release "A step closer to HIV cure" - CROI 2019

A step closer to an HIV cure. No rebound of HIV in two patients who stopped taking their HIV medication after stem cell transplantation for a hematological disease

Medical experts have found no evidence of an infectious virus for months in two HIV patients who stopped their antiviral medication. Both patients underwent stem cell transplantation as part of their cancer treatment. The transplanted donor cells had a gene defect (CCR5delta32mutant), which results in the absence of one of the critical entry gatekeepers that HIV generally needs to infect cells. One of the patients has been without antiretroviral treatment for 18 months, so experts are especially optimistic regarding a possible cure. The other case of HIV was undetectable after 3,5 months without antiviral medication.

Thus far, only one person in the world, ‘the Berlin patient’, has been cured of HIV. Although traces of HIV were found, HIV never rebounded and he is now celebrating his 12th anniversary of being cured. The transplanted cells from a CCR5delta32 donor most likely protected his immune system. He also received aggressive chemotherapy, total body irradiation and two stem cell transplants. For over a decade, the HIV field has been puzzled regarding which of these factors were essential for his cure.

Today, Professor Ravi Gupta of the University College London and the University of Cambridge, presented the breaking news of a new case with a possible HIV cure at the international Conference on Retroviruses and Opportunistic Infections (CROI) in Seattle and will be published in Nature today. His London patient has not experienced HIV rebound during the 18 months after he stopped taking his antiviral medication. This is the longest adult HIV remission after stem cell transplantation since the Berlin patient. Usually, when HIV+ individuals stop treatment, the virus rebounds within the first month.

A second potential cure from HIV after stem cell transplantation will be presented by Dr. Björn Jensen from Düsseldorf University. This patient stopped using his HIV medication for a shorter period of 3,5 months and has also remained HIV free. In previous cases of antiretroviral interruption after a stem cell transplant without the CCR5 Delta 32 mutation, the virus rebounded at month 3, 8 and 10, respectively.

The patients were investigated by internationally renowned researchers. Both patients are registered to the IciStem program.  IciStem is a joint venture of collaborating researchers and clinicians who share their expertise on HIV cure and stem cell transplantation to gain insight into the mechanisms of HIV eradication.  

In both patients only traces of HIV DNA were detected with the most sensitive techniques available to date, similar to the case of ‘the Berlin patient’. According to the principal investigators of IciStem, P. Annemarie Wensing, from the University Medical Center of Utrecht (The Netherlands),  and Javier Martinez-Picado, from the IrsiCaixa AIDS Research Institute (Barcelona, Spain), these cases support the further investigation of CCR5 related gene therapy.

The cases show that, even with one transplant, mild cancer chemotherapy and without radiation, remission may be achieved.

Today, 39 patients who are registered with the IciStem program have received a transplant. IciStem has the largest program to investigate HIV cure following stem cell transplantation, and has identified more than 22,000 donors with the rare CCR5delta32 gene defect. IciStem investigator Gero Hütter, who was the physician who performed the transplant on the ‘Berlin patient’. was instrumental in this aspect  of the program .  IciStem is funded by the Foundation for AIDS Research (amfAR).


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Work from the IciStem consortium has been rewarded at the EBMT!

During the Annual Meeting of the European Society for Blood and Marrow Transplantation (EBMT), Jon Badiola has been awarded with one of the Best Young Abstract Awards. Jon Badiola is a Hematology resident at the Virgen de Las Nieves University Hospital in Granada, Spain. His work is united in the IciStem Consortium and Jon was an author of the abstract that has been awarded: "HIV status in long-term follow-up after allogeneic stem cell transplantation: the “Granada patients”". The abstract was selected from the top-scored abstracts submitted by young physicians. This is a wonderful achievement, thank you all for making this possible!

Jon Badiola
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Our abstract has received a "Best Young Abstracts Award"!

We are very excited to confirm that our abstract “HIV status in long-term follow-up after allogeneic stem cell transplantation: the “Granada patients”", which was submitted to the Annual Meeting of the European Society for Blood and Marrow Transplantation in Lisbon, has been awarded as one of the "Best Young Abstract Awards”. The ceremony will take place on Tuesday, March 20th at 17:00h. This will be during the 44th Annual Meeting of the EBMT, which will take place from 18 till 20 March. On behalf of Jon Badiola González, we want to thank you all for making this possible!

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EpiStem project announces consortium name change into IciStem

Press release: EpiStem project announces consortium name change into IciStem

The European project to investigate the potential for HIV cure by Stem Cell Transplantation adopts a new name to better reflect the international expansion of its activities

UTRECHT/BARCELONA, September 12th, 2016 - In response to the expanding international activities of the consortium, EpiStem, the European Project to guide and investigate the potential for HIV cure by Stem Cell Transplantation, announces its name change into IciStem, International Collaboration to guide and investigate the potential for HIV cure by Stem Cell Transplantation.

Over the last months patients from outside Europe have been included in the project. Following the press conference during the recent AIDS Conference in Durban, South Africa, the project receives a lot of international attention and exchange of information with several institutes from outside Europe has been reinforced.

As of September 12th, 2016, EpiStem will change its name into IciStem to better reflect the global nature of the project and the broader health care commitment. In alignment with the adoption of a new name, the website of the consortium is renamed into www.icistem.org.

About IciStem
Since 2014, IciStem investigates HIV infected patients who receive stem cells from another person (Allogeneic Stem Cell Transplantation) in an observational study. The patients all undergo this procedure because of life-threatening hematological conditions. The project guides and investigates the potential for HIV cure in these HIV-infected patients, aiming to understand the biological mechanisms leading to reduction of viral reservoirs in the body and to identify potential cases of HIV-1 eradication/remission. IciStem is not a clinical trial, but systematically monitors the patients before and for extensive periods of time after the stem cell transplantation.

Funding is obtained from amfAR Research Consortium on HIV Eradication (ARCHE), a program from The Foundation for AIDS Research, amfAR.

The project is co-led by Javier Martinez-Picado, ICREA researcher from the IrsiCaixa AIDS Research Institute (Barcelona, Spain), and Annemarie Wensing, clinical virologist from the University Medical Center Utrecht (Netherlands). The IciStem investigators form a consortium of hematologists, infectious disease specialists, virologists, immunologists and blood/tissue bank specialists from France, Germany, Spain, the Netherlands and the United Kingdom who collaborate with clinicians globally to enroll patients to study blood and tissue samples before and after the stem cell transplantation. 

Further information on the project can be received through IciStem@umcutrecht.nl or at www.icistem.org.

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The IciStem project is supported by AmfAR Research Consortium on HIV eradication (ARCHE) Research Grant # 109858-64-RSRL


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