Q&A: Lifting stigma, increasing knowledge of HIV

In the earliest days of the HIV/AIDS epidemic, HIV was characterized as “the gay man’s disease,” a misrepresentation that resulted in the exclusion of thousands of women from HIV/AIDS clinical trials and an increase in mortality among women who contracted the virus. Unfortunately, the reverberations of this misunderstanding persist today, in the sense that many women — as well as many clinicians — may not be aware that women represent approximately 50% of the 37 million people living with HIV worldwide.

According to UNAIDS, 1 million women and girls became newly infected with HIV 2015, and 470,000 women and girls died of AIDS–related illnesses. AIDS is now the leading cause of death worldwide among women between the ages of 30 and 49 years. There is a continued need for greater understanding of women’s HIV risk. For this reason, National Women and Girls HIV/AIDS Awareness Day is observed every year on March 10.

“We need to correct the existing misperceptions about who contracts HIV,” Regan Hofmann, policy officer at UNAIDS and a board member of amfAR, the Foundation for AIDS research, told Infectious Disease News. “It’s a retrovirus, and it goes wherever it possibly can go biologically. It doesn’t make judgment calls or decisions about whom to infect. If a human being is exposed to this virus, they can potentially contract it. Period.”

Regan Hofmann

Hofmann, who contracted HIV in 1996, discussed the stigma, misconceptions and challenges associated with HIV in women and girls. – by Jennifer Byrne

How can clinicians improve HIV awareness in women and girls?

The first thing we need to do to help clinicians make their female patients more aware of HIV is to help clinicians be more aware of women’s risk for HIV themselves. If society at large isn’t aware of, or discussing, the risk for HIV in women and girls, it’s less likely for clinicians to have it on their radar. We need to change this. I don't think enough clinicians are looking for signs of HIV in women or asking them about it. We should help ensure that clinicians understand why [testing for HIV] needs to become as normal and routine for women as getting a pap smear, a mammogram, a cholesterol count. HIV testing should be part of every woman’s regular annual checkup.

It’s important also to make sure that clinicians feel comfortable talking about HIV with their patients. Because of the stigmatized nature of the disease, some clinicians are afraid to either discuss it at all or to raise the issue with their clients for fear their clients will think they are being “profiled” as someone who seems likely to have a sexually transmitted disease. Women need to understand that not all clinicians are aware of the risk of HIV or that they may feel uncomfortable broaching the topic.

We also should help women and girls become aware that HIV is something they can potentially be exposed to and that they should ask their doctor for a test. If the doctor says, “No, you don’t need it” the woman needs to insist.

Though it has been enveloped in fear and hysteria and stigma, HIV is nothing more than a retrovirus. We need to strip away all of the things that have been layered onto this disease, and treat it as it is — simply a disease. A disease that is preventable, treatable and survivable if people become aware they have it and seek care and treatment.

Can you discuss the challenges of stigma associated with HIV/AIDS?

I’ve been on a mission for years to try to help deconstruct the stigma surrounding HIV/AIDS. I’ve tried to deconstruct it both inside my own head, so that I don’t feel badly about having this disease, and also so that I can hopefully help try to change the perception of the disease for the better among the general public. Basically, I have come to understand it this way: HIV is the virus that causes AIDS, which is a very difficult and terrifying disease. Untreated HIV infection can kill you. That is something that understandably really frightens people, and when people are very frightened, they tend to want to find ways to mitigate their fear, or separate or distance themselves from what frightens them. So, if they can say that only other kinds of people — not themselves — can have this disease, their fear is lessened and they can stop worrying. HIV–related stigma is driven by fear of illness and death. It is a very natural human reaction to a very terrible disease. It’s rooted in survival instinct: when we see others with an infectious, deadly disease, we want to stay clear of them. But with HIV, that is no longer necessary. We must help more people understand that HIV infection is a survivable disease. The antiretroviral medication people living with HIV take to stay healthy also reduces their viral load to undetectable levels, If a person with HIV is undetectable, they are virtually noninfectious.

What are the best preventive measures women and girls can take to protect themselves against HIV?

They’re just a few and they are really simple. Number one: believe you can get HIV. After I told people that I had been diagnosed with HIV, a friend of mine, whom I’d known almost my whole life, told me she was dating someone new, so I asked her if she was using condoms. She said no. I said, “Why not? Doesn’t the fact that I contracted HIV make you believe you could be vulnerable too?” She said, “Well, no, actually, I think you must have done something unusual to get it.” I had only been with the person who gave me HIV one time. I told her that. I told her I hadn’t done anything “unusual.” It’s amazing to think that though commonly we believe that a woman can get pregnant from one act of unprotected sex, there’s a perception that you have to do something “unusual,” or be super promiscuous, to get HIV, which is not true. Believe me, you don’t need to do something unusual at all to get HIV.

Number two: use condoms. Condoms work when used properly; they’re very, very effective. I understand it is challenging for some people, especially for some women, to ask men to use them. But they’re so important. Think of them as a seat belt. You are always safer when you drive with your seatbelt on and you are always safer when having protected sex (though condoms don’t protect against all sexually transmitted infections).

Years ago, at the International AIDS Conference in Toronto, I went to a demonstration given by an HIV prevention organization based in Paris that was teaching people how to correctly put on a condom. It was fascinating, and very practical. They used games and models to instruct people on proper application, fit and removal of condoms. It struck me how many of us don’t get taught these very basic skills, in school or in life. It would be so helpful if we could learn to feel comfortable teaching our children, in age-appropriate ways and ways that respect people’s faiths and cultural traditions, how to protect themselves — and also share that information with our friends and families. We hear a lot about how we should use condoms. But very little about how to specifically wield them well.

When teaching effective prevention, it’s also helpful to share social and communication skills that help people, especially women and young women, to be in situations where they’ know they’ll be safe and have agency over what happens to them. Violence is an issue for women and girls; clinicians treating women for either violence (especially sexual violence) or HIV should screen for the other related issue.

Because the disease can also be transmitted through other means, such as through injection drug use, which is increasingly an issue — especially for young Americans — we need to also better address both the factors that lead to injection drug use and figure out how to protect people who have become addicted to avoid contracting HIV — which in turn helps control its spread.

Lastly, it’s important to know your own HIV status, and of course to ask your partner to get tested. Testing should occur as often as needed based on one’s degree of sexual activity. If you contract HIV, it is important to get treated as quickly as possible. It protects your health, your partner’s health and contributes to your longevity. WHO’s latest guidelines recommend taking medicine as soon as you are aware you are living with the virus, The bottom line is: understand it can happen to you, do everything you can to prevent it, (such as using condoms), know your status and if you contract HIV, get treated immediately.

Tell us about your activism in HIV. How has your HIV status influenced your work?

When I contracted the disease in 1996, I was shocked, stunned into silence and very afraid. At the time, I thought I was going to die in a year, maybe two, because that’s what would have happened if the medicine, which had just recently become available at that time, hadn’t proved effective. It did, thank God. For the first few months, I told no one about it, except for my family and the very few sexual partners I had had, so they could get tested and treated if necessary. I told no one else, other than the few people I considered dating, or dated, for 10 years. I was so concerned about what people would think of me, and how that might impact my family. I feared how having HIV might impact my ability to have a job, to maintain health insurance, to be able to rent an apartment.

After the first few years passed and I was still healthy and alive, I felt survivor’s guilt. It seemed so unfair I had made it and others hadn’t. Eventually, my survivor’s guilt morphed into a sense of survivor’s responsibility. Through an accident of birth I had been born into a country and in a place where I had access to medication that saved my life. I felt that because I was lucky, I should try to help other people who weren’t as lucky, and didn’t have access to life-saving medication or the understanding and support of their family.

I was a journalist, so I decided to use that avenue to try to help. I wrote an anonymous column about what it is like to live with HIV for a magazine called POZ for year. I became the magazine’s editor in 2006. After about 8 years covering the disease for the magazine, I became very interested in the policy landscape in Washington and how it was being leveraged to help address the disparities that existed, both in the United States and abroad, disparities that were driving the disease onward though we had the tools to stop it. It made me crazy, and still does, to know that we have prevention and treatment that works, and aren’t getting it to everybody in need. My interest in how legislation, policy and political leadership intersect with efforts to stop a global infectious pandemic led me to the UNAIDS, where I now work. The UNAIDS mission is to end the AIDS epidemic by getting prevention and treatment to all in need, and by removing the stigma and discrimination that stand in the way of us reaching all people at risk for contracting, or living with, HIV.

What are UNAIDS and amfAR doing to improve HIV testing and treatment rates?

Two years ago, scientific modeling showed that we can end AIDS as a public health threat by 2030 if we achieve targets for the further expansion of prevention and treatment by 2020. Doing so requires accelerated action and a strategic application of the tools we have to reach as many people as quickly as possible. We call it the “Fast-Track” approach. The prevention goal is to have no more than 500,000 new HIV infections worldwide by 2020 (there are now about 2.1 million annually). The treatment goal is known as the “90-90-90, “ because it aims to have 90% of all people living with HIV be aware of their HIV status; 90% of all who are aware of their status on treatment; and 90% of all who are on treatment virally suppressed. UNAIDS has always aimed for zero AIDS-related stigma and discrimination and we continue to work toward those goals. The less stigma and discrimination, the easier and more likely it is for people to come forward for prevention, testing and treatment. The key to ending AIDS eventually, as is true for all pandemics, is to reach as many living with the disease as possible. This is why compassionate inclusion of all people at risk for or living with HIV is essential.

At amfAR, we are making a huge push on the research front to find the cure. We simply can’t prevent or treat our way out of the pandemic. The very nature of the disease makes that true; people can be living with HIV without being aware, and unwittingly spreading it before they have symptoms. So, we need to get better at prevention and develop new and even more effective prevention tools, get more people tested and linked to care, but we also must simultaneously strive for the best prevention and treatment tools; respectively, a vaccine and the cure.

Thankfully, there’s much amazing new scientific discovery happening as we hunt for the cure; and some of the basic scientific research that’s being underway has actual and potential benefits for other diseases as well. HIV is a very tricky retrovirus to control. As we learn more about how to do that, we’re learning about ways to control other viruses, and some cancers.

Until the day the vaccine and/or cure are discovered, and are able to reach people around the world, which is a whole other set of challenges, albeit solvable ones) we will continue to push for an accelerated response to help all people stay safe from HIV.

It’s an exciting time in the response, but a delicate one. We have made remarkable progress against HIV, but the job of ending AIDS remain only half done. We can finish the job in less time than it took to get to where we are if we have the right response in this moment. And it will help enormously if more clinicians and more people embraced the reality that HIV can happen to anyone, including women and girls.

References:

CDC. HIV in the United States: At A Glance. https://www.cdc.gov/hiv/statistics/overview/ataglance.html. Accessed March 10, 2017.

CDC. CDC Fact Sheet. Today’s HIV/AIDS Epidemic. https://www.cdc.gov/nchhstp/newsroom/docs/factsheets/todaysepidemic-508.pdf. Accessed March 10, 2017.

Disclosure: Hofmann is a policy officer at UNAIDS and a board member of amfAR.