Even the greatest among us can stumble.
As the world mourns the passing of Nelson Mandela, it is important to look at the one area where the iconic former president of South Africa slipped — AIDS. The most outstanding moral figure of our age did not do what was needed as HIV began to destroy the country he loved. But his actions after he realized his failures are an important part of his legacy.
South Africa is beset with the worst epidemic of HIV in the world. According to the United Nations, out of a South African population of just over 51 million, 6.1 million of its citizens were infected with HIV in 2012, including 410,000 children under the age of 14. An estimated 240,000 South Africans died in 2012 from AIDS. There are 2.5 million children orphaned because of the disease. The grim social, economic and medical toll AIDS has exacted on Mandela’s country is almost beyond description.
In 1990, when Mandela was released from a 27-year prison sentence, the rate of HIV infection among adult South Africans was less than 1 percent. When the anti-apartheid activist was elected president four years later, AIDS was on it way to being an out-of-control plague, with infection rates doubling every year. In 1998, the rate of HIV infection among adults in South Africa was almost 13 percent, with 2.9 million people HIV positive.
Mandela and his party were more or less indifferent to AIDS throughout his five-year tenure. There were other huge challenges in rebuilding the new post-apartheid nation — but the indifference was not just a matter of priorities. Mandela and his party did not want to admit they had a problem.
Why they did not take prompt action to slow the epidemic’s spread is not clear. Perhaps Mandela and his people — like United States President Ronald Reagan and his administration in the 1980s — found the disease and its modes of transmission too repellent to acknowledge. Maybe they did not want to tarnish the new state with a problem that at the time carried so much stigma and shame.
Continue reading “Mandela’s AIDS Legacy of Silence and Courage”
Filed Under: OP-ED
Tagged: Arthur Caplan, HIV/AIDS, Nelson Mandela, public health, South Africa
Dec 9, 2013
Porn stars all across San Fernando were told to put their clothes back on and go home a couple of weeks ago on the news that a 29 year-old adult actress named Cameron Bay tested positive for HIV.
Shortly thereafter, the Internet lit up. News, judgments, and jokes shot left and right in newsrooms as freely as bodily fluids fly on set. Countless reporters and pundits surely worked overtime to do the deep background: who were Ms. Bay’s co-actors, who did what to whom, and inquiring minds want to know: were condoms used? Imagine the frenzied speculation, all those sticky keystrokes.
Don’t get me wrong: the details of the whodunit have medical import. Public health workers need to find who is at risk. Those who are at risk need testing and education including reminders that early tests can be falsely negative and must be repeated. Since this isn’t the first case of HIV among the scantily clad actors of San Fernando, CA, Ms. Bay’s diagnosis demands we try again to get porn stars to practice safer sex. My guess is legal maneuvers will never do much to affect the sex lives of the nude and infamous, but if porn viewers could learn to have fun even with a condom on set there might be a hope.
Twitter captured all this and more. It showed the diversity of our reactions to Ms. Bay and people like her. Some tweets expressed a sense of inevitability:
Some were judgmental:
Continue reading “Death of a Porn Star”
Filed Under: The Insider's Guide To Health Care
Tagged: HIV/AIDS, Medical Ethics, Patients, public health, public health messaging, stigma, Tim Lahey
Sep 12, 2013
At my infectious-diseases clinic in Southeast Washington, I work with some of the city’s most indigent patients. Some don’t have jobs, a home, a car or enough to eat. But recently, I saw a patient whose problem made these issues seem trivial.
Dealing with fatigue, a cough and a fever for several months, this woman in her 40s had been evaluated by four internists. They had tested her for a variety of conditions but not HIV. Each had recommended rest, two prescribed antibiotics, and one suggested an over-the-counter cough medicine. Experiencing no physical relief from these suggestions, the woman had decided to “lay down and die.”
However, after her longtime partner insisted she get medical help, she agreed to go to a hospital emergency room. After a rapid test, which she initially refused because she said she was not at risk for HIV, she learned that she was HIV-positive.
After that ER visit, she brought her partner, whom she credits with saving her life, to my clinic to be tested; she was concerned that she had transmitted the virus to him. He tested positive. About a week later, when he accompanied her to an appointment with me, I asked if he had been seen by a doctor to discuss treatment. He said no and indicated that he wanted to establish care in the clinic.
When I asked if he had ever been on HIV drugs, he gazed at the medication chart and pointed out his previous regimen, a cocktail that contained indinavir. Because I and many other doctors stopped prescribing this medication a decade ago, I knew he had been keeping his condition from her for years. He stopped talking and avoided my gaze. It was clear he knew that I had learned his secret. I had many questions for him; but this visit was for her.
It was not the right moment to dredge up this history and ask how he could keep his diagnosis hidden while watching his partner struggle with her health. I chose not to ask about his dishonesty, their relationship and whether they had used condoms to protect her from getting HIV. At this point, I needed to help her understand that, even though she felt weak and sick, the medications would soon make her feel better. And that, with the right treatment, she could still live a long life.
While talking with my patient about her treatment, my mind kept wandering back to her partner’s secret. Was it my role to admonish him in front of her, or would that make things worse? What would they say to each other when they got home? I wanted to discuss these questions, but did I have a right to insert my judgment into this situation? At a private visit with me two weeks later, she let me know that this was the moment she realized he’d been keeping his diagnosis from her for years.
As a physician, I am not allowed to reveal any medical information about my patients or their circumstances without their written permission. This confidentiality is sacred. But in this case, that constraint felt inappropriate and irresponsible.
Continue reading “Should Doctors Keep Patients’ HIV Status a Secret?”
Filed Under: Physicians, THCB, The Insider's Guide To Health Care
Tagged: CDC, confidentiality, doctor/ patient relationship, HIPAA, HIV/AIDS, infectious diseases, Lisa Fitzpatrick, Patient privacy, Patients, Physicians
Aug 11, 2013
The U.S. Preventive Services Task Force formally published its recommendation for routine HIV testing for all individuals age 15 to 65 in the Annals of Internal Medicine this week. An editorial and patient materials are all available free to anyone with an Internet connection. Many people who work in HIV hoped that this would finally move HIV into mainstream medicine.
With a U.S. Preventive Services Task Force Recommendation, patients don’t need to ask for the test, it would become a routine blood test like many others, stigma would be reduced, and insurance would likely cover it. The evidence backs it. However, within 24 hours of the Task Force Recommendation going up online, the American Academy of Family Physicians questioned age 15 as the logical starting point, instead urging that testing begin at age 18. This is just some of the resistance that the medical community is putting forward now.
Several months ago, I spoke with Roger Chou, MD, MPH, associate professor of internal medicine at Oregon Health and Science University, Portland, Oregon, who headed the evidence review for the U.S. Preventive Services Task Force. “About 25% of people who have HIV and are not aware of it,” Chou said. “They have no identifiable risk factors.”
Other reasons why data to back routine HIV testing are in, include that “the screening test is highly accurate, we have direct evidence from randomized controlled trials that we can reduce the risk of transmission by 90%, and that you can’t trust what your patient says, , or that patients don’t always think that they are at risk,” said Chou.
Continue reading “USPSTF Backs Routine HIV Testing”
Filed Under: THCB
Tagged: HIV/AIDS, Laura Newman, prevention, Screening, USPSTF
May 5, 2013
“Your baby did not die for nothing,” Rebekah said, looking up at the monitor so Kim would not see her tears. “Your baby was a messenger to us.”
This is how a friend who specializes in high-risk obstetrics attempts to comfort a grieving patient when she delivers a stillborn baby, as portrayed in my novel Catching Babies.
This bedside homily is small succor in the face of unspeakable devastation. But the idea that one family’s heartbreak will contribute to medical research and in some remote but real way help spare families in the future is often the only comfort an OB/GYN or nurse-midwife has to offer.
Which is all the more reason to celebrate this week’s tremendous news about HIV: this time, the messenger baby lived.
According to reports, an infant was born in Mississippi with the virus that causes AIDS, given aggressive doses of the anti-viral medications known to contain — not cure — the disease, and is now disease-free at two-and-half years old. It is the second known “cure” of an HIV-positive patient, and there are no words to describe how exhilarating it feels to read or type those words for anyone who came of age during, or lost friends to, the ugly and terrifying scourge of AIDS.
So take a moment to savor it. A baby with HIV has been cured. No viral load. Disease-free. Yes!
Continue reading “HIV Messenger Baby”
Filed Under: OP-ED, THCB
Tagged: high-risk populations, HIV Messenger Baby, HIV/AIDS, J.D. Kleinke, Medicaid Expansion, prenatal care, The Affordable Care Act, Universal coverage
Mar 8, 2013
In 1986, British Prime Minister Margaret Thatcher’s special cabinet committee on AIDS made a fundamentally important decision which changed the course of the emerging HIV epidemic in the UK. In spite of some vocal opposition, it decided there should be clean needle exchanges for injecting drug users (IDUs) to prevent the spread of HIV.
The opposition to that move has been echoed in the years that followed — not least in the United States. Government-financed needle exchanges would condone crime, the critics claimed. It would encourage drug use and give entirely the wrong message to the public.
The experience of the last quarter of century has disproved those fears. There is no question that needle exchanges and drug substitution have reduced HIV: only 2% of new infections in Britain now come through that route. The policy has neither encouraged drug taking nor crime. Similar reports come from other nations that have adopted this approach.
Tragically, not all nations have followed such a lead. Nearly half of the countries with epidemics concentrated among IDUs have no needle and syringe programs at all according to UNAIDS. The result is the further spread of HIV and an increasing death toll — only four of every 100 people who inject and are eligible for treatment get antiretroviral (ARV) drugs.
Continue reading “Needle Exchange Programs Vital In Fight Against AIDS”
Filed Under: Uncategorized
Tagged: HIV/AIDS, International, Needle Exchange Program, Norman Fowler, PEPFAR
Aug 1, 2012
This post considers potential pitfalls of home HIV testing. It provides an excuse to write a slightly less nerdy column on the mathematics of screening tests.
My friend and co-author A. David Paltiel flew in from Yale to speak with my University of Chicago students. David is a national authority on medical cost-effectiveness, particularly in matters connected with HIV. For example, this beautiful New England Journal of Medicine piece showed that population HIV screening is surprisingly cost-effective, even in relatively low-risk populations. In significant measure due to this analysis, the Centers for Disease Control and Prevention modified national guidelines to promote much more aggressive HIV screening in a variety of settings. So if your primary care doctor or emergency department nurse asks you whether you’d like an HIV test–blame Paltiel.
David and I have published related work on issues surrounding home HIV tests, now under FDA review. (See a great earlier commentary by Walensky and Paltiel here.) To simplify things, the idea here is that you could go to your local Walgreen’s and buy a test kit for about $40. You swab the thing around your mouth. In about 20 minutes, with impressive “accuracy” (in a minute I’ll explain why the commonsense word “accuracy” is a slippery way to describe screening tests), the test will say whether you are HIV-infected.
One natural group of customers might be romantically-involved University of Chicago students: They go out on a date. It goes well. They buy a pair of test kits (maybe romantically sharing one) for a quick HIV test. If the tests come out well…. whatever one cares to happen can now proceed.
Is this test a good idea? In some ways, yes. This normalizes testing. Some people will get tested who would not otherwise obtain care. But there are a variety of reasons to worry. One issue concerns the ability of ordinary people not to mess the test up. A second issue concerns whether home HIV tests will lead people to avoid other medical and public health systems that could provide better counseling and (if needed) stronger post-test linkages to care.
Continue reading “Don’t Try This at Home: The Mathematics of HIV Testing in Low-Risk Populations”
Filed Under: Superhealthanomics, THCB
Tagged: HIV/AIDS, low-risk populations, Screenings
Mar 15, 2012
After years of disappointing trial and error, a vaccine shows success in a clinical trial in preventing the transmission of HIV/AIDS. Granted, the trial shows a less than one-third success rate. Compared to the 85 percent success rate of the new H1N1 swine flu vaccine, that’s quite low. Yet it clearly is the most promising success to date , and we can only hope that it soon leads to a workable vaccine that that immunizes against the HIV/AIDS virus. But what until then? Each year, in the United States alone there are 1.1 million people living with HIV and it is estimated that someone in the U.S. is infected every 9 and a half minutes. Even under the best conditions, the optimistic view is that it will take at least three years before a HIV vaccine is available in the United States. What can be done to help those who have the disease now? Is the American public ready to act?
Actually, a lot–though it seems most Americans remain unaware of this. As a researcher for Public Agenda, a non-profit non-partisan research and public engagement organization in New York City, I have had the opportunity to study both what could be done today to reduce the effects of HIV/AIDS transmission and increase treatment and to see what the public thinks of these ideas. The gap between the solutions that HIV/AIDS experts push for and what the public understands about how to address the AIDS epidemic is wide indeed.
Continue reading “HIV/AIDS: The Future Looks Promising, but What About Now?”
Filed Under: Uncategorized
Tagged: HIV/AIDS, Jonathan Rochkind
Sep 28, 2009