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(UPDATED and Amended*) Bloomberg: “The Berlin Patient” redux, a tale of HIV immunity and perhaps, confusion

On the Bloomberg wire and at its partner, Business Week, Rob Waters introduces maybe you and certainly me, unless I’d heard of him and forgot, to a remarkable man who had AIDS but no longer does. He calls him the Berlin Patient.

This is a straight business story, focussing on a company with an idea, and thus as are many business stories, largely a piece that takes at face value the company’s business plan. Not exactly an unpaid ad, but close to it. It is a remarkable business plan, even accounting for the lack of any discouraging word in the piece. The news is that a San Francisco man, after a stem cell transplant in 2007 in Berlin in which he received cells from another person with natural resistance to HIV, seems to be cured. And not merely of HIV infection but of AIDS. And that  a California company called Sangamo BioSciences is aiming for a commercial, mass market version using an occasionally reported technology, involving “zinc fingers” that alter DNA, to tweak stem cells to generate immune systems resistant to HIV infection.

Which, if it works, and even if it’s colossally expensive when imagined as a mass treatment, is colossal news.

I am also colossally confused. Waters reports explicitly that this 44-year-old San Francisco man who now seems clear of the virus had, until recently, been known in medical circles only as ‘the Berlin patient.”

If so, he may be Berlin patient #2. The first one is described well in this 1998 New York Times story by Mark Schoofs, headlined The Berlin Patient. My guess is that The Berlin Patient of that story is the source of the transplant to our San Francisco patient with the apparent cure, and that the Bloomberg/BusWeek story gets mixed up on who the near-fabled Berlin Patient is. And it’s not the first report to do so:

*UPDATE – See comments below to see why, but in writing this I got a little carried away on the idea that these two surprising, seemingly fully-cured “The German Patient” examples in the history of HIV and AIDS treatment are somehow intertwined. I withdraw the implication that reporters on the recent episode had significant holes in their stories due to omission of the earlier one. I apologize to Waters and Sheridan, who resented  implications of oversight I made as result of  my delight with myself on learning there was a German Patient #1.  It remains a curious thing.  And now to return to the original post….

There probably are others. But if it took me only a moment to search out “The Berlin Patient” and the term’s history, the exact meaning of the term ought to have been explored and, if there is more than one of them, explained in print. In an email exchange, Rob Waters assures me that at least since a 2009 paper in the New England Journal of Medicine, the title “The Berlin Patient” has been on the patient in his story.

A search for a good technical description of Sangamo’s zinc fingers strategy reveals:

Thus, the Bloomberg/BusWk story has been building, and has been reported in bits and pieces, for years. It merits update. But it also could have used more history, and some perspective. A cure for AIDS is a huge claim. Any  hint of such a thing ought to include an explicit recognition of the long list of astoundingly hopeful ideas and initial results that have, so far, fallen short of fulfilling those hopes.

Grist for the Mill:

Sangamo Feb 7 Press Release ; Sangamo 2008 Press Release ;

- Charlie Petit

4 Responses to “(UPDATED and Amended*) Bloomberg: “The Berlin Patient” redux, a tale of HIV immunity and perhaps, confusion”

  1. Kerry Sheridan Says:

    Readers,

    Please note my story did not refer to a “deadly” stem cell transplant. Nor did my story link David Baltimore to this particular research. He is involved in a separate effort. The full article is at this link below. I interviewed several experts on this topic and would be glad, if asked, to provide any more details.

    Best,
    Kerry Sheridan

    http://health.yahoo.net/news/s/afp/healthusgermanyresearchhiv

    An American man is still HIV-free more than three years after receiving a stem cell transplant, suggesting the first-ever cure of the virus that causes AIDS, German doctors said.

    But while the highly risky technique used on the man known as the “Berlin Patient” would not work for most of the 33 million people with HIV worldwide, scientists say the research shows important progress toward a universal cure.

    “Our results strongly suggest that cure of HIV has been achieved in this patient,” said the study in the peer-reviewed journal Blood, a publication of the American Society of Hematology.


  2. Kerry Sheridan Says:

    Also, I disagree with Mr. Petit’s assertion that I was “mixed up on who the near-fabled Berlin Patient is.” All the scientists I interviewed for the story refer to the man involved as the “Berlin patient.”

    Next time I hope Mr. Petit will take the time to contact me if he has questions about a story.

    Thanks,
    Kerry


  3. Charlie Petit Says:

    Thanks Kerry – Glad for the chance to clarify. On the ‘deadly’ transplant, it was in reaction to the headline, not your writing. Most of our readers know headlines are seldom written by reporters. I usually say as much. I should have done so this time too.

    Second, I’ll concede I seldom call or contact reporters whose stories I cite. I’m a critic, and react to what I read. That said, I selected your story as one example to show that the Bloomberg-Bus.Wk. article is no outlier, but is one of many referring to the SF man as The Berlin Patient. Your story is a good one, reasonably long and well reported, so I called attention to it.

    If the researchers have also been calling the SF man The Berlin Patient , that’s good information to have. But it leaves interesting question?: whatever happened to the first Berlin Patient? Is his near-immunity to HIV a factor in the new round of treatments? Thanks again and best regards.


  4. Charlie Petit Says:

    I’m posting this comment for Rob Waters/ CP
    ——————
    Read your post today. I think you’re confusing the issue and getting too hung up on the provenance of the phrase, “the Berlin patient.” Yes, there was another but they’re not the same guy and they didn’t have the same procedure. Berlin patientn #2, if you want to call him that, went from HIV-infected to having no detectable virus after receiving a stem-cell transplant and has captivated AIDS researchers for that reason.

    Here’s the NEJM report that brought this patient to public attention:
    http://www.nejm.org/doi/full/10.1056/NEJMoa0802905

    Here’s a link to a reprint of a follow-up paper by Hutter on this same patient:
    http://www.investorvillage.com/smbd.asp?mb=1933&mn=36742&pt=msg&mid=9934559
    (Pubmed’s entry is still blank, just the title w/no abstract but this is a true copy of the abstract).

    Neither my story nor the AFP story you highlighted are confused or off-base. There is a guy, he lived in Berlin, he had HIV and leukemia, he had this procedure, it apparently cleared all traces of HIV from his system and many AIDS researchers are very interested in this as a model (and have referred to him as a Berlin patient). CIRM, the CA stem cell agency gave out a $14 million grant to the City of Hope and Sangamo to pursue this. It’s been vetted by scientists. Sangamo is attempting to develop a gene therapy that would acheive the same end by different means.

    Yo suggested that the first `Berlin patient’ who was reported top have gone off antiviral drugs back in the late 1990s might have been the stem cell donor for the second patient. I asked that question of Gero Hutter, the doctor for Timothy Brown (Berlin patient #2) and here’s his reply:
    “It would be very unlikely:
    1. Normally, a donor should only donate stem cells once in his life.
    2. The probabilty of matching between two unrelated people is only 1:100,000 up
    to 1:1,000,000, so it would be a very great accident that both donors are the
    same.”

    I think you’ve gone on a tangent on the issue of the Berlin patient.

    Best,

    Rob


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