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, MD 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 piece originally appeared in The Washington Post on July 20, 2012.

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34 Responses for “Should Doctors Keep Patients’ HIV Status a Secret?”

  1. Brad F says:

    Lisa
    Good post. However, I waited for your own personal pronouncement as the piece concluded.

    Where do you stand, if you will express your personal feelings? Ethics may be muddled in cases such as these, but we have our own morals. How do you handle above situations?

    For me, I might feel one way in theory (engage but remain at arms length), but in the moment, outrage might overrule my good reason.

    Brad

    • Brad F thanks for asking. I have not and will not divulge a patient’s status to an unsuspecting partner because right now for this infection it is against the law. Hence, my uneasiness. If a patient came into my office with active TB, I would be required to report this and his family members would be notiified. The way we have stigmatized and exceptionalized HIV requires me to behave differently so I would not.

      I understand why it is difficult for patients to tell their partners or anyone about their status. Having HIV remains taboo. But I hope raising these issues will force a conversation about why in 2013 HIV remains so stigmatized and how healthcare providers are part of the problem. Many of us feel uncomfortable talking about sex and HIV despite it now being a completely treatable sexually transmitted disease.

      Until we can figure out how to talk as openly about it being a treatable condition as we do about other infections and diseases I will continue to protect my patient’s information despite my discomfort knowing about the potential risk to others. It’s the law. I dont like it and that is why I am speaking out about this.

  2. Curly Harrison, MD says:

    You can offer counsel without violating privacy.

    • Yes and that is exactly what we do. My staff and I spend an extraordinary amount of time with patients like these trying to get them to a place of comfort and support to feel strong enough to disclose their status. These efforts are largely unsuccessful because we can not go home with them.

  3. Bobby Gladd says:

    “Six years ago, the Centers for Disease Control and Prevention recommended routine HIV screening in all medical settings. ”
    ___

    Exempting themselves, of course (the CDC staffers who wrote and published this recommendation).

    Are there any solid data on the sensitivity vs specificity and Bayesian misclassification rates of HIV screens? Would these misclassification rates escalate proportionally to a ramp-up to mass screenings? (Asked and Answered)

    I’m a 67 year old non-drug using healthy white male, faithfully married for a 3rd of a century to a professional woman who routinely donates blood.

    The probability of my being HIV positive is — effectively — exactly zero. The probability of an error during a “routine HIV screen” of my blood, however small in nominal terms, is consequently infinite in comparison. The upshot of such an error could wreak havoc on me.

    Also, at a cost of ~$50 each per rapid-HIV assay, well, do the mass screen math. There are roughly 238 million adults in the U.S.

    • It is true widening the screening net will yield some false positives but we continue to miss many people by not routinely screening. The cost of an HIV test is no longer $50 but more along the lines of $15-20.

      I will continue to test people who have never had an HIV test because I believe any sexually active person should be tested at least once. For every story I hear about a 67 year old with zero chance of being positive, I could match it with stories of 60 and 70 year old celibate people who were never tested but diagnosed with AIDS because a provider thought they had zero risk and zero chance of being infected.

      The cost-effectiveness of this strategy has been demonstrated.

      • Bobby Gladd says:

        “For every story I hear about a 67 year old with zero chance of being positive”
        __

        It’s not a “story,” it’s a fact. For me, it would have ZERO “cost-effectiveness.” It would be all cost, unknowable (but >0) risk, and no benefit.

        • Sue says:

          Basically, what Bobby is saying is “forget reducing the incidence of HIV and potentially saving lives by having regular testing, what about the fact that I have to pay $15 a year for a test I don’t need?”

          What is a small fee a year compared to someone’s life?

          • Bobby Gladd says:

            Naive. Ignorant of assay reality.

          • Tim Lahey says:

            Dear Sue and Bobby,

            To bring the conversation back to concepts and away from the tempting polarization of online commentary, I thought some background might help.

            Since all HIV testing assays are imperfect, there are trade offs to consider: how many false positives are an acceptable cost of finding the approximately 20% of people who are infected but don’t know it, and also are the costs justified?

            Modern HIV assays are awesomely accurate and nearly all algorithms require confirmatory testing of some sort, so the false positive risk is minimized, but not zero. The cost is also quite low given the magnitude of clinical benefit that can result.

            As you can imagine, these and other factors were considered in detail in formulation of the 2006 CDC guidelines which suggest all US adults be offered testing at least once regardless of their or the clinician’s estimate of risk. That last clause is because seroprevalence studies have repeatedly shown that many people erroneously believe they are not at risk when they are. That’s a major reason why 20% of those infected have not been tested: they think they are not at risk when in fact they have low or average risk and of course HIV is happy to get lucky when we do.

            Given that decades of life saved result from most HIV diagnoses for those with access to care, and that the cost of those lives saved is quite reasonable according to cost effectiveness studies, this policy seems reasonable.

            That said, despite the huge public health benefit of finding and treating those 20%, testing is of course entirely voluntary and so patients who truly believe infection is too unlikely to consider testing after education are welcome to decline the offer.

            For those wanting more details, Wikipedia has a nice brief summary of likelihood of false positives etc (link below) and the actual CDC recommendations are online plus PubMed has a gozillion related epidemiological studies.

            http://en.wikipedia.org/wiki/Diagnosis_of_HIV/AIDS#Accuracy_of_HIV_testing

            Hope that helps -
            Tim

        • Thanks Tim. The only other point I’d add is that the cost of HIV testing should now be covered by insurance companies thereby alleviating concern of cost to the patient.

  4. john irvine says:

    Interesting discussion. Here’s a random question.

    Should a doctor who is HIV positive be required to tell their patients?

    Not sure I have a position on this – and certainly not arguing for any kind of 80s style policies. Come to think of it, might argue no. But wondering what policies people have seen?

    • Bobby Gladd says:

      Should everyone who is HIV-positive be required to wear a Star of….well, HIV on their shirts, blouses, or coats? If a doc’s medical condition is of no material risk to a patient, then the answer is ‘No’.

      • john irvine says:

        Whoa. Treat the question in the manner it was asked. That battle is over. Done. We need to get over it.

        You’re perhaps forgetting how intensely physical the practice of medicine can be. And perhaps not thinking about the things that happen in emergency rooms. Sharp objects go flying. Instruments get dropped. Accidents happen. Hospitals are dangerous places.

        I am arguing no. But I want to understand what is happening.

        • Bobby Gladd says:

          Yeah, it was inflammatory and tangential. And you’re right about the dangers in hospitals. But the “risk” — is any — should by now be an empirical matter, than than just a conjured spectral “threat.”

          I was just thinking more of outpatient setting.

          I still argue “no” on balance.

          • john irvine says:

            Here’s another thought for us to all chew on.

            Much of our current thinking about what privacy is and how it should be handled dates back to this moment in history.

            As a result – to some significant degree – hospital privacy policies are insane.

            Many of our applicable laws are insane.

            For these and other reasons – communication and basic information sharing is limited and often virtually impossible.

            I think we should stop and think about that. In a scientific, thoughtful way. And then I think we should do something about it.

  5. Tim Lahey says:

    Hi Lisa -

    I’m an HIV doc and clinical ethicist and I feel your pain! This is a tough one. I’m glad you’ve worked to open the conversation like this.

    The problem is that there are competing priorities here. We want to earn our patients’ trust (and thus be most effective in the promotion of their health) in part by respecting their privacy, but we want to protect their partners from harm. Our first obligation is to the patient in front of us, but we do have some measure of responsibility for that unseen other.

    As you have said, there is no easy solution on a case-by-case basis, and it would be nice for national guidance on this to be clearer. It’d be a nice outcome of your thoughtful article to see more conversation about this.

    For what it’s worth, I’ll tell you how I handle it: I err on the side of respecting privacy unless I think there is a clear danger to somebody else. By this I mean that I do the same kind of extensive counseling you do with the patient, which includes encouraging them not only to disclose but to use safer sex practices. In those rare situations in which there is a partner who does not know about HIV, and whom the patient is not protecting via disclosure or reasonably effective preventive measures, then I tell my patient that I feel worried that danger is nigh and that I’d like to help them make things better. Would they be willing to disclose or have my help with disclosure? If this doesn’t work and still the patient admits to real HIV risk to their partner, I let them know I feel duty bound to disclose anonymously for the safety of that other patient.

    This is analogous in my mind to a psychiatrist who learns of murderous intent or a family practice doc who learns that patient is abusing a child – some priorities trump even privacy.

    Hope it’s helpful to have that perspective, and thanks again for keeping the conversation alive.

    Best,
    Tim Lahey

  6. Robert Remis says:

    There is a critical element left out of the discussion so far. An HIV diagnosis is reportable in all jurisdictions in Western industrialized countries. Public health personnel have the authority, responsibility and training to carry out partner notification. This is done routinely in most jurisdictions and is carried out with respect and tact. The public health department will help you resolve your dilemma.

    • I disagree that health departments are equipped to address this problem and able to help solve the dilemma. Despite decades of STI contact tracing experience, many have not implemented partner notification for HIV. We have a program here but it does not effectively address the issue related to disclosure.

  7. Thanks for the post. This is definitely a difficult area of ethical grayness. However, I agree with your decision to uphold the law and maintain your patient’s privacy. Guaranteed secure trust between patient and doctor encourages individuals to seek medical assistance in the first place. But just because you should maintain patient privacy doesn’t mean you are forbidden from counseling the patient towards revealing their condition to their partner.

    http://advancedacneinstitute.com/blog

    • Lisa Fitzpatrick says:

      Counseling patients to disclose is a given and standard of care in our practice. We also routinely offer to help them disclose by having them bring their partners in….but few take us up on this offer. The solution requires something much broader beyond the walls of our clinic and the support we offer. They are not disclosing because of HIV stigma. The question is how to meaningfully and impact fully address this on a societal level.

  8. Cassie Stegeman says:

    Good post. Very controversial topic that needs more public awerness.

  9. Kelly Adams says:

    Great post, thank you Dr. Fitzpatrick for your thoughtfulness on this topic. I am a social worker in a busy public HIV clinic, and I find myself being extra cautious (in terms of privacy) in ways that I don’t think would apply if I worked, say, in a dialysis clinic. Clearly HIV is still highly stigmatized, but I wonder if health care professionals aren’t adding to the stigma by always “tiptoeing” around the issue? I mean, when a doctor feels the need to call me in to deliver positive test results because they’re THAT uncomfortable, I think there’s a problem.

    This is a little tangential, but still relevant to the privacy vs. public health issues you’ve raised – considering the emphasis on retention in care and “treatment as prevention” in HIV positive patients, how far should we (social workers, doctors, etc) go in trying get bodies in the clinic? If you have a patient who is difficult to reach (phone being cut off, moving constantly, etc), how much can you reveal to a family member or partner in attempting to communicate that the patient NEEDS to be seen? Because HIV is an infectious disease, we can’t just give up and say “oh well” if a patient falls out of care (without viral suppression, they’re putting others at higher risk of infection), but I also think that people do have a right to some choice in the matter of receiving medical treatment…

    Not easy questions!

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  11. Kelly,
    Thanks to “condom size chart” above I am now seeing your comment. :). I believe a critical mass of providers should petition CDC and HRSA to consider these issues and provide national guidance. What do you think?

  12. Lisa says:

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    please i wish to know the implications of not reviling hiv test result to my a partner,husband or wife … what effect will these have in a family

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