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Living With HIV & AIDS

Lessons From a Life With HIV

Regan Hofmann and her horse, Boogey Man | Photo by Phyllis Dawson

Having lived openly with HIV for 18 years, I get asked a lot of questions. I’m happy to answer them. It’s why I share my status: to help break the soul-crushing stigma and discrimination that can accompany HIV.

Here’s what I remind people: I have HIV not because I’m a bad person, but because I was a biologically unlucky one. I take responsibility for the choice I made that made me vulnerable to HIV. It was the same choice hundreds of millions of people have made; it’s just that when I did it, HIV was present. HIV is a virus, not a punishment. I deserve the same compassion and medical care as anyone who faces any illness.

The stigma is so enormous, however, that it was only after years of repeating these facts to others that I was finally able to embrace them myself. I live daily with a virus that is trying to kill me. I am currently winning our mutual battle for survival for one reason: I have access to lifesaving antiretroviral HIV treatment.

Incredible progress

Significant scientific advances have been made since I was diagnosed 28 years ago. Then, I took 14 pills a day and was given a year to live. Now, one small pill daily keeps me on the planet, and I am trying to navigate how to grow old gracefully.

Data from the Joint United Nations Programme on HIV/AIDS (UNAIDS) shows there are 39 million people living with HIV. The great news is that 29.8 million of them are accessing treatment. Treatment not only allows those of us with HIV to live healthy, long lives — it also serves as prevention. When a person’s HIV viral load is undetectable, HIV cannot be transmitted.

The astonishing progress made against AIDS was unimaginable only a decade ago. A growing number of countries have met, or will soon meet, the “95-95-95” targets (95% of people living with HIV know their HIV status, 95% of people who know their HIV status are on treatment, and 95% of people on treatment have suppressed viral loads). In addition, 18 countries and territories have eliminated mother-to-child transmission of HIV.

But our work remains unfinished as 9.2 million people with HIV are not accessing life-saving medicines. Only 57% of children aged 0 to 14 who are living with HIV are on treatment. We have the tools to prevent each new HIV infection and every AIDS-related death. So, the fact that every year more than a million people contract HIV, and more than half a million people die of AIDS, is unconscionable.

Unnecessary obstacles

Stigma and discrimination hinder our ability to reach the United Nations’ goal of ending the AIDS pandemic as a public health threat by 2030.  The stigma that I face is compounded for people who are from marginalized communities. For gay men and other men who have sex with men, people who inject drugs, transgender people, sex workers, and people in prisons, there is a disproportionate risk of HIV, and there are multiple layers of challenges when seeking HIV prevention and treatment. Women and girls face heightened risk and struggle to access care, too. Across sub-Saharan Africa, 3,100 young women and girls aged 15 to 24 acquire HIV every week — three times the rate of their male counterparts.

Ending AIDS requires that we overcome the inequalities and disparities that make it dangerous, unaffordable, or impossible for millions of people at risk of or living with HIV to get the care they need and deserve.

When politicians or pundits attack people living with HIV, or marginalized communities, they make it much harder for people to access services to prevent and treat HIV. Hate perpetuates pandemics. Respect for all people is how we overcome pandemics.

Especially in the context of a pandemic, the well-coordinated and well-funded global attack on human rights — which has recently intensified — undermines global health security. This is the message we carry to global leaders: it is by honoring their responsibility to uphold the human rights of all people that they can make the world safer for everyone.

Looking forward

A friend recently asked whether I am glad I came forward with my HIV status. Of course, there are many moments when I wish this was not my reality – when I wish the world wasn’t privy to this fact about me. But I am also deeply grateful for the chance to enlighten people that we can put AIDS in history’s rearview mirror and to share how we can do it: by setting aside judgment, prejudice, fear, and misunderstanding, and embracing everyone, everywhere.

I know the excruciating pain and hopelessness of being diagnosed with a terminal condition. Thankfully, I also know the joy and indescribable release that comes when it is no longer terminal — when science and compassion enable survival and give you a new lease on life. This experience should be universal for all people facing HIV.

I became an AIDS advocate, and work for UNAIDS, because I know that continued progress is possible if we can convince world leaders to extend kindness, support, and equitable access to care to all. The evidence is crystal clear: we can end AIDS, and overcome any pandemic, but only if we reach everyone — including here in America. I’ll die trying to ensure that we do.

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