Putting a Face on the Search for an AIDS Cure

Published on
October 25, 2012

I first heard about the man who became known as the “Berlin patient” sometime in 2008, when an AIDS activist told me about a patient who’d supposedly had the AIDS virus eliminated from his body. For me, the story remained a rumor until February of the following year, when a report on the mystery patient was published in the New England Journal of Medicine. It described the case of a man who had been infected with HIV for a decade and then developed an aggressive case of leukemia. According to the medical journal’s findings, he appeared to be cured of both after his doctors tried a radical treatment — a bone marrow transplant from a donor with a genetic mutation that made him resistant to HIV. The patient’s immune system was replaced by the donor’s, accomplishing two things: It no longer contained cancer-forming cells, and a receptor normally used by HIV to invade immune cells was disabled, blocking the door to the virus.

As a health and science reporter for Bloomberg News, I interviewed the young German doctor behind the treatment and wrote about his findings. To my surprise, the journal report attracted only modest press coverage at the time. I was fascinated, however, and began a two-year quest to find the anonymous “Berlin patient.” I eventually succeeded in meeting and interviewing the only person in the world who has been cured of HIV. I told the story of this gentle, soft-spoken man and his extraordinary ordeal in Businessweek and, later, San Francisco magazine.

For years, research aimed at curing AIDS had been on the back burner – so far back that researchers were reluctant to even use the word “cure.” Drug companies devoted their money to developing new treatment combinations — and government-funded research focused largely on prevention, which has been moderately successful, and vaccine development, which has been an expensive flop.  Brown’s cure and his willingness to step forward, coupled with the work of AIDS activists and scientists, have put cure research firmly on the AIDS scientific agenda. “Timothy’s case has contributed in a major way to shifting the discussion about this disease—from managing it to trying to cure it,” Steven Deeks, a veteran AIDS researcher, told me.  

The two articles, especially the longer report in the June 2012 issue of San Francisco, allowed me to tell a story that combined a compelling human narrative with a fascinating, if complex, scientific breakthrough that may hold profound implications for the future. It’s the kind of story I love.  It’s not the kind of story, however, that we as journalists run across every day. Still, there are some universal lessons I took away from this quest, and I’ll try to share them here.

Science is like a detective story, so tell it that way when you can.

Medical and scientific research is nearly always about a discovery, the effort to unlock a mystery or solve a riddle. While breaking news stories rarely give you the opportunity to do this, whenever you can, describe the quest that that the researchers were engaged in: How did they come up with the idea? Where did they begin? What were the steps they took and the roadblocks they had to surmount? Did they always believe it would work? Was there an “aha!” or “eureka” moment of powerful insight? If you can touch on these questions and incorporate them into a suspenseful chronology, you’ll engage your readers so that they’ll want to follow you down this path.

Find the character at the center of the action.

Sometimes a scientist is the main actor whose story you want to tell. A more common way to personalize and create drama in a health story is to tell the story of a patient. That’s not always easy to do. The patients who participate in clinical trials are anonymous and doctors may be reluctant to connect you. But not always, and it doesn’t hurt to ask.

I first requested an interview with the Berlin patient in February 2009 when I interviewed Gero Hütter, the young oncologist who conceived and carried out his treatment. The then-anonymous patient wasn’t ready to speak to the press at that point (in fact, he was fighting for his life, cycling in and out of hospitals and a rehabilitation center). But persistence and patience can pay off. In this case, I made it a point to keep in touch with Hütter, and when he came to San Francisco for a conference and to receive an award for his work, I met him and renewed my request. Months later, he told me the patient’s name and gave me his cell phone number in Germany. We began a protracted series of conversations that ultimately led to an interview, Brown’s first with a U.S. reporter.

If you can’t talk to a patient who is part of the research you’re writing about, you may be able to speak with one in an earlier version of a study, or someone who was treated at another institution. Even talking to a patient who was treated in the “old way” --before a new treatment approach was developed -- can help you tell the story.

Before interviewing a scientist, do your homework.

If you’re writing about a new research study, read it. Yes, these papers are dense reads and often hard to follow. But do your best. If a press release was issued about the study, it may help you. But be wary of relying solely on press releases as these promotional summaries can inflate or misstate findings. You may also get some help from the study author, but it’s also wise to check in with medical sources who aren’t connected with the original study or caught up in the success of the outcome. Some new outlets have as a policy to ask anyone interviewed about a study if they have a financial tie to the research. If there are earlier papers on the same subject, read them and any stories that were published about them. You can often find such papers cited in the new research. If you’re covering a broad area of treatment, there may be a review article that evaluates the research in that area. For example, use Google Scholar to look up the phrase gene therapy for HIV review (without quote marks) and you’ll find an article titled “Current developments in anti-HIV/AIDS gene therapy.”

One great resource on medical research is PubMed, an easily searchable database containing more than 21 million abstracts for biomedical research literature. You can often click on the author name in a study and find his or her email. Pubmed also cross references abstracts on related topics. To contact a study author or other scientist, you also can ask the press office at his or her institution to arrange an interview. Or you can reach out to the researcher directly. The websites of virtually every university and most research institutes have a faculty directory.

Use a gatekeeper wisely

With many health stories, the leaders of patient advocacy group can be well informed, highly opinionated and well-connected. In some cases, activists can become important characters in a narrative story. They also can connect you to patients with real-life stories. This gatekeeper might also be a physician, community leader, nun or outreach worker who can help you open the door and gain access to elusive sources. In reporting an AIDS story, particularly one in another country or that involves sensitive topics such as prostitution or drug use, your contact will need to be someone who has gained the trust of the people you’re trying to reach.  A gatekeeper can be invaluable, and it’s crucial to respect his or her time and resources. But it may also be important to remind him or her that as a journalist, your role is different than that of an activist or advocate.

Look for the business angle (Hint: Follow the money)

“Following the money” is a good suggestion for almost any health piece, and AIDS stories are no exception. The successful treatment of Timothy Brown helped jumpstart the efforts of two biotech companies, attracting investors and triggering research grants from California’s stem cell agency and the National Institutes of Health. Look at the proposals that were submitted and how the money is to be used. Ask some other questions: Who are the principal investors? How likely are they to make money? Are there conflicts of interest? How is the public likely to benefit? If a publicly traded company is involved, there will be research analysts who follow the company and provide their insights and recommendations to investors. Get their reports and talk to them.

Whether you are writing about AIDS prevention or the emerging field of cure research, these steps should take you closer to your goal. By paying attention to such elements, you can develop a story that combines cutting-edge science and a compelling human drama. In the process, you may get to meet someone like Timothy Brown, whose courage and struggle to survive may help lead to a cure for millions.

“My purpose is to try to effect a universal cure,” he told me. On his website, he put it still more elegantly: “My dream is not to be the man who stands before you and says, ‘I am cured,’ but to be the man who stands before you and says, ‘We are cured.’”

Photo: Timothy Brown, formerly known as "The Berlin Patient." (Eva Kolenko)

Rob Waters is a writer based in Berkeley, California. He writes a health and science blog for Forbes and his feature stories have appeared in Mother Jones, the Los Angeles Times, Salon, the San Francisco Chronicle, Businessweek, Parenting and other publications. He covered health, science and biotech for Bloomberg News and was a senior editor at WebMD and staff writer at Health magazine; he was also editor of the Tenderloin Times, published in English, Cambodian, Laotian, and Vietnamese.