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.
Unfortunately, this was not the first time I had seen an HIV diagnosis being kept secret in a serious monogamous relationship. Over the past four years, I have encountered dozens of HIV-positive patients, men and women, who have not told their sexual partners about their diagnosis. This is extremely troubling, especially considering that, in the United States, about 20 percent of people with HIV are unaware they are infected.
A few months ago, a patient of mine urgently wanted to know her viral load — which would tell her the amount of HIV in her bloodstream. She had a new boyfriend and had decided that if the amount of virus in her blood was low and was controlled by her medication, she would not disclose her status until they were married. For the first time, I realized that our incredible achievements in reducing HIV infections could be undermined by the fact that good treatment may make people feel less responsible for disclosing their status.
Am I somehow complicit in perpetuating the dishonesty if I say nothing?
I encouraged this patient to think about how she would feel if she were in her partner’s position. She did not feel strong enough to divulge her secret on her own and asked if she could bring him for a visit, so they could get tested together. That way, she reasoned, she could feign shock and distress when I revealed her diagnosis.
We played out the scenarios. What would happen if he learned that we both were being dishonest? Would physical harm come to her? Would I jeopardize my credibility and integrity as a physician? I certainly believe so.
This ethical dilemma looms large in medical practices across the country. Since we can’t destroy the sacred patient-provider confidentiality, we encourage patients to tell their partners about their HIV status and to use condoms, and we link them to support groups if we can. The next patient comes in, and the cycle repeats.
These issues give me heartburn. Most of my patients are very comfortable with me; they know they can tell me anything without being judged. But am I being a responsible medical professional by keeping someone’s health history confidential when I know that my patient might be putting someone else at risk? Should there be consequences for people who don’t tell their partners they have HIV? How do we balance personal responsibility while minimizing stigma and shame?
We cannot ignore these questions. We have conferences, research meetings and working-group discussions about prevention strategies, research agendas, and how to improve care and treatment. But in my experience, we don’t discuss, devise or implement ways to help patients be honest with their partners.
Above all, we need to remove the stigma associated with HIV testing and being HIV-positive. If health-care providers and patients viewed and handled the disease like the manageable and treatable condition it is, we could chip away at the negative perceptions associated with the virus, like we have done with cancer, tuberculosis and syphilis.
Changing perceptions of HIV, despite how it is transmitted, will eventually facilitate disclosure. Six years ago, the Centers for Disease Control and Prevention recommended routine HIV screening in all medical settings. But in Washington, a city with one of the highest HIV/AIDS prevalence rates in the country, many health-care providers still think that they can discern which patients are at risk for HIV. If providers thought of the disease as a chronic condition similar to diabetes or high cholesterol, and tested for it regularly, HIV’s stigma would recede.
This seems simplistic because it is. Change would start with testing everyone at a certain age and continuing to do so routinely, whether or not they are “at risk” of infection.
A credible body such as the Institute of Medicine or a similar scientific group should convene a civil discussion about how and where to implement routine HIV screening in the primary-care setting. Officials should also reconsider HIPAA and other patient confidentiality regulations to determine when and if exceptions can be made.
If we want to eliminate the disease, we have to address the most difficult and unspoken parts of it. If we don’t, the achievements we’ve made in fighting HIV will plateau, and the epidemic will continue to grow.
Lisa Fitzpatrick is a CDC-trained medical epidemiologist and infectious-diseases physician in Washington. From 2005 to 2007, she directed the CDC’s Global AIDS Program in the Caribbean and implemented the President’s Emergency Plan for AIDS Relief (PEPFAR) for that region. This article is adapted from a piece that appeared on PBS’s Frontline Web site.