HIV and Self-Advocacy in a Medical Setting: How to Overcome Institutional Stigma

“They may ask, ‘How did you get HIV?’” says Raymond Alejo, RN, a community health nurse with the Hawai’i Health and Harm Reduction Center in Honolulu. “Or take unnecessary precautions, like wearing gloves when they don’t have to,” such as to take a temperature or blood pressure reading.

Why Self-Advocacy Matters for Your Health

“People with chronic medical conditions need to be able to advocate for themselves,” says Jill Blumenthal, MD, an infectious-disease specialist with UC San Diego Health. “You’re not always going to be with someone who has all the information, and it may be you [who] is that person. And if you want to have the best care that you can get, just making sure that you’re communicating those needs around your HIV [status] is very important.”

How to Advocate for Yourself at the Doctor’s Office

Before you go to your first appointment with a new provider, it helps to do some research about their experience treating people with HIV, Dr. Blumenthal says. “Any ability to message a provider in advance is a big bonus,” she says. “I think that’s probably a best practice that often doesn’t occur.”

This research is especially important because not every provider will be up-to-date on HIV. “I was talking to an American clinician not too long ago, and he had thought that the HIV epidemic was over,” says Dominic Chow, MD, PhD, MPH, a professor with the Hawai‘i Center for AIDS and the University of Hawai‘i Department of Medicine.

Prepare and Bring a ‘Health Script’

Bring a “health script” to your appointment with pertinent information and questions. This should include information about your medical history, symptoms, and current medications, Alejo says, adding that questions you may want to jot down include:

• What’s my next step as far as care is concerned?
• What are my medication options?
• Will my insurance cover my care?
• Who can I turn to for more questions?
• What is the best pharmacy to use?

“HIV is a chronic medical condition, just like diabetes, just like hypertension, just like many of the chronic conditions people deal with,” Blumenthal says. “Talking about it in a way where you feel comfortable with it can make a provider feel more comfortable as well.”

Bring a Support System

Know Your Rights and Medical History

How to Handle a Stigmatizing Encounter

Here are some strategies for handling healthcare bias.

• Note and pause. Note that the stigmatizing event happened rather than ignore it.

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  Blumenthal recommends asking for “a minute” to pause the conversation and collect yourself before moving on.
• Document everything. Quickly write down details of the event — the date, what happened, who was present, etc. — to create a record, suggests Blumenthal. “Then it’s something you can come back to and either say, ‘I’d like to speak to a clinic manager about this,’ or, ‘I’d like to send a message to the doctor or the provider about what happened,’” Blumenthal says.
• Ask for clarification. If something doesn’t feel right, Alejo suggests “asking for clarification about what you’re experiencing” to invite your provider to reconsider and explain what they just said or did. Recognize that we all make mistakes and approach the issue with curiosity, not certainty.

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• Escalate when necessary. A patient advocate or clinic manager can address a pattern of stigma that a single conversation didn’t resolve, says Blumenthal. “A lot of health systems have phone numbers and departments where they listen to patient concerns,” Blumenthal says. “I think that’s a great way to express something that occurred.”

How to Find an HIV-Competent, Affirming Provider

Ultimately, you may decide that your provider is not a good fit. “If you’ve developed a great relationship with your clinician, and they’re willing to explore and learn, then it’s a win-win,” Chow says. “If you aren’t getting what you need and you feel stigma, then you should find a different provider.”

Some resources that can point you in the direction of an HIV-competent, affirming provider include:

• State HIV/AIDS Hotlines
• Ryan White HIV/AIDS Program Medical Providers
• HIV.gov’s HIV and STI Testing Sites and Care Services locator
• American Academy of HIV Medicine’s referral link directory

“Word of mouth” is another great way to find a provider, Chow adds, “as with any profession, be it electrical, plumbing, or anything.” Other medical providers, friends, family, online reviews, or people from an HIV support group may be able to point you in the right direction.