“People need to know that the H in HIV stands for human.” HIV prevention specialist Carter Cantrell on discrimination and other barriers to care.

By Communications Team • January 27, 2021 • 10:21 am

Story as told to Michael Toumayan:

It’s been nearly 40 years since this country saw the first reported cases of HIV. Unfortunately, we still have work to do to make sure that people living with HIV like me can get the care we need.

In my job as an HIV prevention navigator at my local clinic in Columbus, Ohio, I’ve seen patients really struggle to access treatment because of discrimination in housing, employment, and even medical care. I know that passing comprehensive LGBTQ nondiscrimination protections at the state and federal level will help my clients and people living with HIV across this country take advantage of the life-saving treatments that are available.

Being diagnosed with HIV is traumatic, and patients suffer if we don’t get competent care and good information from our provider. When we face discrimination on top of all that, the outcomes can be dire.

When I was diagnosed with HIV nine years ago, I had very little knowledge of the disease. In my recollection, the provider at the clinic came in, gave me my results, and left. I didn’t feel cared about, and there was no effort made to leave me with next steps or educate me about what was happening.

Being diagnosed with HIV is traumatic, and patients suffer if we don’t get competent care and good information from our provider. When we face discrimination on top of all that, the outcomes can be dire.

I didn’t know the first thing about HIV, nor did I know that it was possible to live a full life with this diagnosis. Honestly, I thought I was being given a death sentence. That lack of care nearly cost me my life.

The day I was diagnosed was one of the worst I’ve experienced. I was watching my daughter that night, and I called her mother and told her about the diagnosis. Although my daughter’s mother is now much better educated about HIV, at the time she didn’t have all the facts. She immediately came and picked up our daughter because she didn’t want our child near someone with my diagnosis.

It broke my heart. I felt incredibly isolated and afraid. I truly believed that night that I was losing my child, and I didn’t think I would live long enough to see my daughter grow up.

That night, I drove to a bridge with the intention of attempting suicide. Thankfully, my daughter’s mother called me right as I was at my lowest. Determined to get help, I called my brother, who helped me check into a mental health treatment facility.

Knowledge is power. Compassionate, competent care saves lives. I decided to become a prevention specialist because I wanted to help people in similar situations to me.

It was at that facility that I was connected with a case worker who saved my life. This case worker was the first person to give me options, education, equal treatment, and hope in regards to my diagnosis. With their help, I was receiving HIV treatment within a month. A month after that, I was undetectable. I have been undetectable ever since.

Knowledge is power. Compassionate, competent care saves lives. I decided to become a prevention specialist because I wanted to help people in similar situations to me.

I now work to connect with HIV+ patients who have fallen off of treatment for six months to a year or longer. I work to get these folks back into care by connecting them with shelters, providing transportation, and even personally picking them up and taking them to treatment.

There are many reasons that people fall out of treatment. Getting adequate health care is difficult enough in this country—and when patients are dealing with stigma, discrimination, access issues, and mental health difficulties on top of that, it’s hard to be consistent with treatment. My clients fear discrimination from medical professionals as well as poor treatment from friends or family who might find out their status if they attend treatment. When homelessness is involved or lack of job security, these issues further compound.

I know from experience that to truly address HIV in this country, we need three things:

Competent Care

This is a lifesaver and a necessity. Medical providers must be competent in treating LGBTQ patients, supporting mental health, and providing HIV and STI care. Doctors need to understand that a medical diagnosis like this has a profound mental impact on a person, and they should be offering real support for the emotional impacts as well as the physical.

Education

As a prevention navigator, I ask everyone who gets tested if they know how HIV is transmitted. Many of my clients either don’t know, or think they know but are incorrect. We need to be teaching clear and non-judgemental curricula about HIV into our schools so that every single person has the information they need to protect themselves.

LGBTQ Nondiscrimination Protections

For those of us who are both LGBTQ and HIV+, discrimination can be a real barrier to accessing care. I see this all the time through the experiences of my clients.

Far too many LGBTQ Americans living with HIV have been denied housing or unemployment due to anti-LGBTQ discrimination, or have been fired or evicted due to this discrimination. According to the National Alliance to End Homelessness, up to 50 percent of people living with HIV are susceptible to becoming homeless because of discrimination faced at work and discrimination in housing.

No one should be discriminated against because of who they are, who they love, or their health status. People need to know that the H in HIV stands for human—that means any one of us can contract the virus.

That’s why it’s more important than ever that we pass the federal Equality Act—a bipartisan piece of legislation that would secure comprehensive nondiscrimination protections for ALL LGBTQ Americans, in all areas of life, including employment, housing, and public spaces.

No one should be discriminated against because of who they are, who they love, or their health status. People need to know that the H in HIV stands for human—that means any one of us can contract the virus. The likelihood that you know someone with HIV is incredibly high. They could be someone in your family, a friend, a colleague, or an acquaintance. I urge people to think about how you would want that person to be treated, and then live those values out loud.


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