Women and cure in the U=U era

Undetectable equals Untransmittable. Three powerful words that have come to symbolise a transformative development in HIV treatment. From the fear and stigma of the early days of the HIV epidemic and through the era of HIV treatment, U=U has the potential to shift perceptions of what it means to live with HIV. For people living with HIV, it is a release from the fear of discrimination and rejection. It gives them confidence to enjoy all the pleasures of healthy sexual relationships, to have children, to live without stigma. For others in the community, it shifts perceptions of HIV as something to fear to a manageable condition like so many others.

What is U=U?

The idea that HIV treatment can prevent HIV transmission has been around for over a decade. Studies from the mid-90s on preventing mothers living with HIV from passing HIV to their babies provided early proof of the concept of treatment as prevention. In 2008, the Swiss Statement asserted that people with well-controlled HIV infection could not sexually transmit HIV to sexual partners. Since then, a number of large studies have proven the claims in the Swiss Statement. The U=U campaign launched in 2016 after the completion of HIV transmission studies where only one partner was living with HIV. These studies (HPTN052, PARTNER, PARTNER2 and Opposites Attract ) followed thousands of heterosexual and homosexual couples and found zero risk of transmitting HIV if the HIV positive partner had a sustained undetectable viral load. The powerful U=U consensus statement outlines the principle that has since been endorsed by nearly 800 organisations around the world.

The U=U message is simple. People living with HIV who take their medication as prescribed and who have an undetectable viral load for at least six months cannot transmit HIV through sexual activities. While this message is powerful and relevant for all people living with HIV and their communities, it has a distinct impact on women*. Reducing stigma is one major and powerful way U=U is transforming perceptions.

Heather Ellis, chair of Positive Women Victoria, says “U=U is a key factor in reducing stigma… it reduces fear in new relationships by giving women the confidence to disclose their status and giving HIV negative partners the confidence to continue. It removes the fear of infection”. After living with HIV for 30 years, Susan Paxton wishes the U=U message was stronger. “I know few women who will speak publicly about living with HIV, because they are still weighed down by the burden of secrecy”. She sees the U=U message as powerful within the HIV community, but not reaching the broader community. The power of U=U lies in spreading the message as widely as possible.

How is U=U different for women*?

Sexual health, pregnancy and breastfeeding need to be addressed in the context of U=U. While U=U can prevent sexual transmission of HIV, it does not prevent pregnancy or other sexually transmitted infections. The sexual and reproductive rights of women* living with HIV need to be strengthened and supported within the context of U=U. Jackie, a young mother living with HIV for 3 ½ years says “it’s amazing to know I can have a potential pregnancy without transmission of HIV to my baby, but I’m really disappointed with the current Australian recommendations on breastfeeding”. The World Health Organisation recommends that mothers living with HIV should exclusively breastfeed their babies for the first six months of life while having ongoing access to antiretroviral treatment. In Australia, women living with HIV are advised NOT to breastfeed because of the small risk of transmission of HIV via breastmilk. The data on the risks of HIV transmission via breastmilk are sketchy, with few studies conducted with breastfeeding mothers on continuous treatment.While U=U is clear about the risks of sexual transmission, more research is needed to define the risks of transmission by routes such as breastfeeding.

How does U=U impact the search for an HIV cure?

Heather Ellis says “the treatments we take that brought about U=U are as good as a cure, but I pray scientists will discover a cure for the millions of people globally who don’t have access to HIV drugs. Without access, many will die from AIDS”. Jackie reflects “with U=U, you can have a normal happy life, but cure is still the end game”. For some, well-controlled HIV is good enough and finding a cure is not important. Susan Paxton plainly states “I don’t expect a cure in my lifetime.”

U=U is so simple, it could affect people’s willingness to participate in cure trials requiring treatment interruption. For Susan, treatment interruption gets a decisive no.  She draws on the terror of AIDS: “I know what a raging viral load means. Many people who’ve been diagnosed more recently than me just don’t know how scary it is to think you’re going to die. I’m just going to keep popping my pills.”

For Heather, the decision to interrupt treatment would be dependent on context. “I would be reluctant to interrupt treatment, probably like many people. I would need a lot of information to feel justified, especially because I don’t experience any side effects of treatment.”

Jackie reflects on the history of research involvement from the HIV community “I think about the people who died. It’s because of them that I’m here. It’s because of them that we have U=U”, but her willingness to participate in research comes with constraints. “I’m in two minds. On one hand, I have a good relationship with my doctor and know I would be closely monitored and looked after. On the other hand, I have many other responsibilities. I’m finally in a stable situation after a lot of upheaval in my life”. U=U raises the stakes for finding an HIV cure because it transforms HIV into a manageable, chronic infection.

I think about the people who died. It’s because of them that I’m here. It’s because of them that we have U=U

Jackie

The search for an HIV cure in the U=U era needs to address a range of community concerns. Women* are under-represented in HIV cure trials. There are underlying differences in HIV infection in women* and men, so cure research should involve both. Cure strategies must work just as well for women* as for men. A number of issues exist around access to research studies, many which are more likely to affect women*. These include work commitments, childcare needs and balancing multiple responsibilities.

The design of study visit schedules and support for study participants should consider these issues. Reflecting on her willingness to participate in research, Jackie says, “I’d be 150% in, but there are questions including ‘can I bring my child with me?’ and ‘will it fit around my work commitments?’”. HIV advocacy organisation ICASO released a community brief addressing U=U for women* in late 2018. The brief draws on the experiences of women* living with HIV around the world and calls for women’s* experiences to inform the messaging around U=U. It draws attention to the need to ensure women’s* sexual rights and self-determination, full reproductive rights and equal access to treatment and care.

The search for an HIV cure must include women*. The search for a cure must also reflect the power of U=U.

*women: inclusive of young women, post-menopausal women, mothers, lesbian and queer women, Aboriginal women, women with disabilities and trans women in all the diversity of geography, sexuality, ethnicity, religion, education, employment and socio-economic status.

Thank you, Susan, Jackie and Heather, for generously providing your time and thoughts.

antiretroviral therapy ART cure HIV research U=U women