Top Cancer Doc: I Have HIV -- Stigma Can Be Devastating

Nick Mulcahy

December 12, 2016

SAN ANTONIO – Eric Winer, MD, the prominent breast cancer clinician and researcher from Dana-Farber Cancer Institute in Boston, Massachusetts, revealed for the first time publicly that he is infected with HIV here at the San Antonio Breast Cancer Symposium (SABCS) 2016.

"It's by no means a secret, but it's something I've never talked about in public...or in a room with more than five people," Dr Winer told the meeting attendees during an honorary lecture on December 9, one day before his 60th birthday.

Born with hemophilia in 1956, at a time when the average life expectancy for males with the disease was less than 20 years, Dr Winer was the recipient of historic good luck when factor VIII concentrate became available. He was 13 years old at the time. "Overnight, I was a normal teen," he said.

But during his years in medical school, he became one of about 10,000 Americans who were infected with HIV between 1979 and 1983 from contaminated blood products. Once again, Dr Winer had good fortune (and excellent medical care) and lived long enough to receive highly active antiretroviral therapy (HAART), the introduction of which immediately changed the course of HIV infection. As with so many other persons with hemophilia, he also became infected with hepatitis C virus (HCV) at the same time he contracted HIV, but he was cured of HCV after 2 years of treatment with interferon and ribavirin.

The past 8 years have been especially good, thanks to HAART, Dr Winer said.

"Bizarrely, I have a better chance of being around for another 15 to 20 years than I did at age 10, 30, 40, or 50," he said, acknowledging his highly unusual life history.

But Dr Winer also revealed that the stigma associated with HIV was so immense that he led an "undercover life" in the late 1980s and 1990s. "I could barely tell my friends and colleagues," he said, referring to his HIV diagnosis.

Although he would have preferred to be like Magic Johnson and fully disclose his status, Dr Winer nonetheless kept quiet, fearing the loss of his career and financial vulnerability, as well as the social hardships his children would have to face. He provided one anecdote that reflected the level of fear about HIV at the time ― his dentist "fired" him, citing staff concern about his infection.

"The stigma...based on medical illness can be devastating," he said, referring to both his illness and breast cancer, which is still stigmatized in "many parts of the world" and continues to be "in some places in the United States."

He reminded the audience that "people are far more than their illness" and that "there is always room for hope because science marches forward."

Dr Winer delivered these and other life reflections during his William McGuire Memorial Lecture, an annual honor given to an oncologist who has made significant contributions to breast cancer medicine.

C. Kent Osborne, MD, of Baylor College of Medicine, in Houston, Texas, introduced Dr Winer, describing him as "well known" for his contributions in research and education as well as "his internationally recognized skill as a breast cancer clinician."

After delivering a retrospective review of the past 25 years of progress in breast cancer care and reciting a list of needs for the future, Dr Winer transitioned into "personal reflections," which is standard for McGuire Lecture honorees.

"I want to share my own story with the hope that it might be of interest and helpful to others," he said at the beginning of the reflections.

He described an usual childhood in which he partly "grew up" at Boston Children's Hospital, and at age 11 was riding a "full size" tricycle for fear of falls and bleeds.

In 1982, while in medical school and hearing about the initial three cases of HIV reported in people with hemophilia, he said to himself: "Damn, we're all infected." Interestingly, Dr Winer also said that in those early years, conventional wisdom in the hemophilia medical community was that "most people [with HIV infection] won't get sick."

He married his wife, Nancy Borstelmann, in 1984 and had two boys and a girl from 1985 to 1989. Their daughter was born just as conventional wisdom was changing to "everyone's going to get sick and die."

In 1987, he moved to North Carolina and Duke University for his medical fellowship. It was a "pretty crazy time," he said.

"I never imagined I would see my kids grow up, and though I was not in denial, I simply did not think about it very often."

He's had some serious complications from HIV treatments, including portal hypertension with acute and chronic gastrointestinal bleeding. In 2008, he received a vascular shunt to address the problem.

Dr Winer is very mindful of treatment complications with his own patients and told the audience that "we need to carefully consider toxicities when we have treatments with small potential benefits."

He also believes that oncologists need to help their patients "cope" and believes that his early adversity has served him well in making adjustments throughout life (ie, with coping).

Dr Winer also observed that his once-a-week factor VIII long-acting concentrate injections cost about $600,000 a year. Without insurance coverage, "nobody can afford this," he said.

Thanking his wife, Dr Winer closed the lecture, and the audience rose for a standing ovation.

Follow Medscape senior journalist Nick Mulcahy on Twitter: @MulcahyNick

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