BE PROACTIVE

Because many health providers need to know your HIV status in order to treat you optimally, it helps to ask up-front: “Is your practice experienced and comfortable treating people with HIV—especially when it’s undetectable like mine?” If they respond, “Oh, absolutely, that’s no problem” or even “We don’t have many (or any) patients with HIV, but we’re happy to consult with a specialist,” then you’re good to go.

However, if a provider says, “Sorry, we don’t take people with HIV,” then you may have a valid claim under the Americans with Disabilities Act (ADA). In that case, you could consider contacting a lawyer, filing a complaint through ADA.gov or reaching out to your state or local human rights division or commission. If you decide not to take any such action, at least you’ll know to seek care elsewhere. And if there truly isn’t an alternate provider, you may need to politely but firmly remind the refusing provider that the ADA requires them to treat you.

BE THOUGHTFUL

“I think that, in general, every practice wants to get better,” says Demetre Daskalakis, MD, chief medical officer at New York City’s LGBTQ-serving Callen-Lorde clinics, who believes that providers don’t make patients with HIV feel uncomfortable on purpose. In situations that fall short of outright refusal, like having “HIV+” written prominently on a visible medical chart or seeing staffers don excessive protective gear once they learn you’re HIV positive, you might want to start with  simple, nonconfrontational questions, such as: “Excuse me, could you not leave my chart with ‘HIV+’ stamped on it where others can see it?” or “Can I ask why all that personal protective equipment is necessary, given that HIV isn’t spread casually and I’m undetectable?” Sometimes, that alone might be enough to prompt change.

WEIGH YOUR NEEDS

Small things at a health practice might make you feel stigmatized or uncomfortable, but if you have limited care options—because, say, you’re in a rural area or because of your insurance options—then unfortunately it’s up to you to decide whether speaking up is worth it.  “The patient shouldn’t have to educate the provider,” says Daskalakis. That’s absolutely true. But you’d be surprised how often providers are not up to speed on basic facts about HIV, including the fact that people on antiretroviral meds who have a suppressed viral load can’t transmit the virus to others. This is known as Undetectable Equals Untransmittable, or U=U. If you’re in a resource-scarce setting, you may have to play the role of patient and teacher, as annoying as it is.

REMEMBER THE STAFF WORKS FOR YOU

It’s easy to feel intimidated by health care providers, especially when age, gender, race, sexuality or other power differentials are in play. But ultimately, says Daskalakis, “patients have a lot of rights—and the boss in the room is you.” At the very least, he adds, providers should help refer you to another provider, rather than leaving you without care.

TALK TO SOMEONE YOU CAN TRUST

Feeling discriminated against or stigmatized by a health care provider can take an emotional toll. Make sure you have at least one person, such as a trusted family member or friend, you can talk to about the experience, even if you decide not to address it directly with your provider. If you don’t have someone you can turn to, consider calling a nearby HIV services organization (search for one using the POZ Directory) and asking whether there’s someone you can talk to. You might also find support in one of the many online communities for people living with HIV, such as the POZ Forums or a community Facebook group.