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Promiscuous Gay Nerd: A Competent, Inclusive Health Department is a Right, Not a Privilege

, by Jake Sobo

PGNerd_JPEG“Can I talk to you for a second?” Even over the phone, I could tell something was up. My normally chipper and unfazed friend’s voice was trembling. His doctor had called to tell him that he had tested positive for syphilis, but that wasn’t the problem. He was leaving town the next evening and needed to get treated quickly, but finding a competent provider in his small town is basically impossible. So he called the local health department, thinking they could help. And that’s where it all went downhill.

He eventually spoke with a nurse at the county health department, who asked for his name and date of birth. When he told her his information, she abruptly put him on hold. When she came back, her tone had changed. She was suddenly severe and accusatory. “Oh, we got you. We know you’ve been running around sleeping with people and not telling them your status.” She went on a tirade, accusing him of being “recalcitrant” and warning him that he could be imprisoned under the state’s outdated, felony HIV disclosure law.

While gay men who live in large urban centers such as San Francisco may find their local health department staffed by gay men and allies who are compassionate and understanding of their sexuality, those of us who live elsewhere are often faced with homophobic and sex-shaming staff. We don’t have an LGBT health center tailored to our needs, like San Francisco’s Magnet, Seattle’s Gay City, or Boston’s Fenway Health. That means we’re often stuck with out-of-touch public health departments as de facto “health centers,” where employees sometimes seem more interested in blaming, shaming, and policing us than actually providing us with the care we deserve.

Like many gay men, my friend—we’ll call him Sam—is HIV positive. And like everyone in the United States who has been diagnosed as HIV positive through a confidential test, the health department keeps Sam’s name and information on file. Names-based HIV surveillance systems were controversial in the 1980s and early 1990s, because many privacy activists were concerned they were vulnerable to misuse and abuse. By the mid-2000s, those debates had fizzled and the CDC had convinced all 50 states to adopt the practice.

By the time Sam called me, my friend could barely speak. He was clearly traumatized, confused, and worried. “I don’t understand. I tell my partners my status. I don’t know what she was talking about.” He was scared to ever have sex again locally, and wondered out loud if it was time to leave the state he had called home for almost his entire life.

I tried to reassure Sam, but the fact is that I hear horror stories like his all the time. A recent study of Michigan county health departments ruffled feathers for revealing that some departments were using HIV surveillance systems in ways they did not disclose. That study found that some county health departments were cross-referencing names-based reporting systems with partner services referrals to identify HIV-positive people they suspect aren’t disclosing. Anyone who is newly diagnosed in these counties with HIV or any other sexually transmitted infection are asked not just to disclose their partner’s names, but also whether any of the people they named told them that they were HIV positive. They would then check that list of names against the state’s names-based reporting system to identify potential offenders.

Connecting the dots in Sam’s case, I suspect that’s the kind of shoddy police work being employed by his health department. He had been named as a partner by someone who tested positive for syphilis six months ago. If his local health department is employing the same method described in the Michigan study, they might have asked that person whether Sam told them he was HIV positive. If that person said no, but they knew Sam was HIV positive, that might have been flagged and noted in their system.

While that kind of sleuthing might sound reasonable in theory, let’s imagine for a moment that you are an HIV-negative person who has just tested positive for, say, chlamydia at your small-town county health department. The perfectly nice but clearly uncomfortable nurse asks you to tell her the names of everyone with whom you had sex, and then she asks you if any of those people told you that they were HIV positive. If one of your partners had disclosed to you that he was HIV positive, would you tell her? Even in spite of your nagging suspicion that she thinks your sex life is reckless, self-destructive, and sad?

If all the health department was seeking was surveillance data, such unreliability might be acceptable. But the fact is that many people still think that having sex with someone who is HIV positive is tantamount to suicidal behavior. Some health officials seeking this information seem to not just be looking for data, but also for ammunition in their efforts to harass and bully their community’s HIV-positive people into not having sex, period. My friend is now terrified of the health department, and will live in fear that some jilted partner will decide he should be harassed by officials or, even worse, thrown in jail.

I joked with Sam that we should file a class action lawsuit against local health officials for their pattern of abusive, defamatory, and hateful behavior. But it’s really not a laughing matter. I am sick and tired of this abuse. Let’s not mince words here: Health officials like the one who reamed out my friend Sam are helping to drive the HIV epidemic and to worsen gay men’s physical, emotional, and psychological well-being. Moreover, they are doing it in localities—namely, smaller cities—where there are fewer resources and fewer community-based organizations, and hence a greater need for culturally competent services for gay and bi men.

The kind of HIV discrimination my friend experienced is called out specifically in our country’s National HIV/AIDS Strategy: “To be free of discrimination on the basis of HIV status is both a human and a civil right. Working to end the stigma and discrimination experienced by people living with HIV is a critical compo­nent of curtailing the epidemic.” Another critical component? The knowledge and attitudes of staff at health departments across the country: “The success of public health policy depends upon the cooperation of the affected populations. People at high risk for HIV cannot be expected to, nor will they seek testing or treatment services if they fear that it would result in adverse consequences of discrimination.”

The health department is not the police. They are not the church. Their role is to prevent illness and monitor ongoing epidemics. Sexually active people, gay or straight, in all parts of the country, should be able to go to the health department and be treated like human beings with legitimate sexual practices and health needs—that’s a right, not a privilege. They should not live in fear that their health department is going to judge them, scold them, or make them feel ashamed of their sexuality. They especially shouldn’t have to worry that their health department is going to report them to the police.

What can and should health departments be doing differently? For starters, those that don’t already have an explicit non-discrimination policy in place should adopt one. Right now. Also, staff trainings should include information about gay men’s sexuality and health needs, as well as the importance of making the health department a safe setting for all members of the community to access sexual health services from providers they can trust.

The next time my local health department calls for my help, I’ll be screening. You want my partners’ names? I don’t think so. Not until you regain my trust—and the trust of my gay brothers.

I suspect that many of you out there on the internet have stories like Sam’s. Many of you have positive stories to share, as well. And health department officials may want to share examples of public health done right. Please share your stories in the comments below or send me a note at mylifeonprep@gmail.com.

Jake Sobo is a pen name used for anonymity. Jake has worked in the world of HIV prevention for nearly a decade. He previously published a 19-part series documenting his experiences on pre-exposure prophylaxis (PrEP), “My Life on PrEP,” for Positive Frontiers magazine, which was picked up by Manhunt, translated into French, and widely read in the HIV prevention world. He has spent the better part of his adult life having as much sex as possible while trying to avoid contracting HIV.

Resources

Whether you are an individual seeking a positive experience at your local health department, clinic, or doctor’s office, or a provider looking to better understand and address the health needs of your HIV-positive and/or LGBT clients, there’s something for you in this resource round-up.

How to Improve Gay Men’s Sexual Health: How do we improve how providers and clients talk about gay men’s sexual health and HIV prevention? Experts in the field offer guidance in this report from a think tank on gay men’s health.

BETA “Virtual Library” on Talking to Doctors: Tried-and-true tips and strategies for boosting your relationship with your provider (or finding a better one), communicating with your health care team, and getting more from your medical care.

National LGBT Health Education Center: A project of the Fenway Institute, this site is jam-packed with resources to help clinicians improve cultural competence, take a thorough and non-judgmental sexual history, and provide better health care to LGBT patients. (Patients: you can download or print these materials, share them with your provider, and use them to advocate for your own health care and wellness.)

Advancing Effective Communication, Cultural Competence, and Patient- and Family-Centered Care for the Lesbian, Gay, Bisexual, and Transgender (LGBT) Community: Designed for hospitals but applicable to other health care settings, this “field guide” offers strategies, examples, resources, and testimonials to help improve communication and foster patient-centered care for LGBT patients.

Self-Assessment Checklist for Personnel Providing Services and Supports to LGBTQ Youth and Their Families: Is your health care environment a safe and welcoming space for LGBT patients? Use this checklist to gauge how you’re doing, and for ideas on making your clinic or office more inclusive and comfortable, from the waiting room to the front desk to the exam room.

GLMA Cultural Competence Webinar Series: This four-part webinar series explores physical and mental health concerns specific to LGBT individuals, reviews factors that drive how LGBT people seek and receive care—and how those factors affect health—and suggests ways to create safe, welcoming health care environments for all.

Helping Your Provider Establish A Friendly Environment: Written for patients but equally informative for providers, the Rainbow Access Initiative’s short guide to LGBT-friendly office practices gives practical tips, such as appropriate language for medical forms and conversations about sexual health.

GLMA Provider Finder: Looking for an LGBT-friendly new doc? Search by zipcode to find one near you. Click “Additional Search Options” to locate a provider by specialty (HIV/AIDS, behavioral health, complementary/alternative medicine, and more), gender, languages spoken, clinical setting, and payment option.

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Comments

6 Responses to Promiscuous Gay Nerd: A Competent, Inclusive Health Department is a Right, Not a Privilege

  1. Thank you for sharing. I was diagnosed with HIV in 2010 by the NYC Department of Health. Even in a city like New York the experience was deeply stigmatizing. I now do some work in HIV Prevention and Education and its important to me to help people access HIV testing and services in a culturally competent and non-stigmatizing environment.

  2. Kay B says:

    Most of this post made me really sad. What the nurse said is absolutely completely inappropriate (and I would expect and hope that it was not in line with her dept’s protocols) and I’m sorry that your friend experienced that. I’m also horrified to hear that it is something you hear regularly.

    But I’m also really sad to hear about withholding partners’ names. I did disease investigation for a County health department and most of my patients/clients were MSM living with HIV. What makes someone at risk for an STD? (1) Having sex. And many of the sex partners of someone coming in with a new STI are probably not in sexually monogamous relationships (though obviously you can get an STI from a monogamous relationship as well), which is a further risk factor. I am most definitely not judging — so, so far from judging — but I am stating a fact.

    When a patient was willing to provide names of sex partners, it offered an opportunity for the health department to reach and engage with someone who was having sex, and likely having sex outside of the context of a monogamous relationship. It was not a time to judge or lecture or to make any conclusions about the relationship between the original patient and the named sex partner. I would never dream of sharing any sort of information between those two parties — e.g., bringing back disclosure information or misinformation — but rather I’d just get in touch with that sex partner and say something along the lines of ‘Hey Sam, someone who came into my clinic tested positive for an STI and gave me your name. When was the last time you were tested? Can I make an appointment for you to get tested at a clinic convenient to you?’

    I fully agree that having a stigmatizing encounter with a health professional is harmful to sexual health, mental health, the HIV epidemic, etc. But I’d just also like to point out that I engaged many, many people who then tested and found an infection — sometimes the same bacteria or virus that the original person had, sometimes not — which was then treated. And that’s the point. Sometimes these were people who didn’t consider themselves at risk for anything for some reason, sometimes these were people who did test with some regularity but tested again because of the call, whatever. Sometimes people knew about the free testing & treatment options, sometimes they didn’t. Sometimes people knew that you can carry gonorrhea in the throat, sometimes they didn’t. Sometimes they were in care for HIV, sometimes they weren’t.

    I know that disclosing sex partners and getting a call about a possible exposure are not generally fun conversations to have. But I hope that people can recognize the purpose and the utility of this practice. And I hope that everyone who has contact with a health dept has an experience that is factual and non-judgmental, that validates a healthy sex life*, and that potentially provides some value to them.

    Best,
    KB

    *I just want to clarify that despite my use of the word monogamous, I by no means have ever preached that as an ideal. Whatever works for you, works for me. I’m just stating some generalities about risk, which of course do not apply to every situation. You can have low-risk open relationships or anonymous sex and you can be at risk within a monogamous relationship and I absolutely know that. I personally got an STI within a monogamous relationship from someone (who was by no means sexually naive) who didn’t think he needed to disclose because he didn’t think what we were doing posed a transmission risk (or he thought I already had it, hmm, I guess I never asked). No hard feelings, no blame. And we’d had a ‘hey, have you tested recently?’ conversation, but we didn’t go into details — despite my occupation. The existence of experiences like this is why I appreciated when clients would provide me with sex partners, even when they didn’t think these sex partners were at risk based on their encounter. Maybe the encounter was no- or low-risk. But who among us couldn’t use a reminder to test?

  3. Kay B says:

    And PS — thanks for sharing those resources. I’m sure I could stand to learn something and look forward to reading them myself.

  4. Ian says:

    This is shocking, not just for the breach of trust, lack of compassionate understanding and inclusivity, but also for the appalling waste of limited public resources. If all that energy and staff time went into creating supportive environments for research, prevention, testing and treatment, how different would the landscape be … As HIV- gay man, and more importantly as a human being, the way HIV+ people are treated not only outside the LGBT community but within it still makes me sad for humanity. People’s fear and ignorance is barrier to moving forward in any real way, but such fear and ignorance from the medical profession is unacceptable.