How to Advocate for Yourself at the Doctor’s Office
Advocating for yourself at your provider’s office can take many forms, but it’s generally about being prepared, inquisitive, and assertive about your needs.
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.
Also make sure to educate yourself about HIV and the concept of U=U, or undetectable=untransmittable, which means a person with HIV who reaches and maintains an undetectable viral load through treatment cannot transmit HIV to others through sex. This knowledge can help produce a more productive, credible conversation with your provider by shifting the relationship away from a purely deferential one where they have all the information.
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?
A short script with useful phrases can also make it easier to redirect a conversation that veers into judgment rather than care. Refer to the Centers for Disease Control and Prevention’s’s HIV stigma language guide, which offers direct substitutions for common stigmatizing phrases. For example, if your provider refers to you as an “AIDS patient,” which implies a constant state of illness that can be demoralizing, calmly and confidently state that you’d prefer the term, “person with HIV.”
“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.”
Your health script notebook (physical or digital) can also be a place to take notes during your appointment about any issues that come up or items you want to research later.
Bring a Support System
Consider bringing along a trusted friend, partner, or professional patient advocate to your appointment. They can take notes, ask questions you might not think of in the moment, and provide steady support if a visit becomes difficult. “The support person is actually really critical,” Blumenthal says. “There’s lots of data to show that peer navigators and peer support are extremely helpful for people living with HIV and other often-stigmatized medical conditions.”
Know Your Rights and Medical History
Under the Health Insurance Portability and Accountability Act (HIPAA), you have a right to privacy about your health status and to access your medical records. You can request your records from your previous providers — and sharing them with your new provider, whether on paper or through a patient portal, will help them get up to speed quickly. You can also ask to see your record after your appointment to make sure it’s correct and complete. If you disagree with anything in it, you can ask your provider to make an amendment.
