Prevention Access Campaign builds a movement as Undetectable Equals Untransmittable goes global.
Orignally posted on www.poz.com
Bruce Richman is founding executive director of the Prevention Access Campaign (PAC), which launched the Undetectable Equals Untransmittable (U=U) campaign in 2016. U=U refers to the fact that people living with HIV on effective treatment do not sexually transmit the virus. Since the launch of U=U, a groundswell of research has confirmed that having an undetectable viral load renders people incapable of transmitting HIV to their sexual partners. (Click here to read more about the science.)
Before launching PAC, Richman was the founder of Inspired Philanthropy Group. He developed philanthropic initiatives with people and brands, including Donna Karan, Ellen DeGeneres, Archibishop Desmond Tutu, The Bob Marley Foundation, Banana Republic, Sephora, Cartier, professional sports stars and others.
Richman received a master’s in education from the Harvard Graduate School of Education and a doctor of law degree from Harvard Law School. He tested HIV positive in 2003. He learned in 2012 that his undetectable viral load meant he could not transmit the virus, which inspired him to share the good news worldwide.
Why is U=U important?
U=U sets people living with HIV free from the fear of transmission. We have been living with and dying from HIV stigma for over 35 years. U=U is a chance to end that stigma.
U=U is also an incentive to getting more people on treatment. Reducing HIV stigma should lead to more people getting tested for the virus. For those who test HIV positive, U=U is an added incentive to start treatment, stay on treatment and stay in care for their health and the health of their partners.
U=U also helps public health as an argument for increasing access to treatment and services for all people living with HIV. The combination of keeping people healthy, helping them to maintain an undetectable viral load and preventing new HIV transmissions gets us closer to ending the epidemic.
Why is U=U still not widely known?
There are many reasons. U=U is radically at odds with the status quo. This is revolutionary information. It goes against decades of fear of the virus and of people living with HIV, so to unlearn all that is going to take some time.
It will take consistent repetition of the message from influencers in the HIV field and in various communities to move people to accept this is true. Even when folks accept that it’s true, it is still a challenge to communicate it.
The decisions of whom to communicate it to and how are filtered through prejudice and paternalism, where information providers are deciding which people living with HIV are supposedly responsible enough to get this information. Communities that are already marginalized are being left out of this information.
It’s dangerous to keep the misperception out there that we are a risk. Not only do people living with HIV internalize that message, but people who want to love us, have sex with us and babies with us are getting that message too.
Tell us about PAC’s U=U strategy.
We’ve successfully advanced the U=U message through advocacy, education and communications.
In early 2016, we collaborated with leading researchers on HIV sexual transmission to issue the first U=U global consensus statement as an advocacy tool. Over 800 community partners from nearly 100 countries have since endorsed the U=U message.
Our advocacy work initially focused on U.S. public health departments and health ministries around the world, as well as major influencer organizations, to update their risk assessments to align with the science. That advocacy has expanded to include updating their treatment guidelines accordingly.
When it comes to education, it’s about helping people understand the science and how to communicate that science. It’s really not that complex. It’s about TLC. Treatment: stay on treatment as prescribed; Labs: get labs done regularly; and Connection: stay connected to care.
The details are also not difficult. The threshold for U=U is under 200 copies per milliliter, synonymous with viral suppression. U=U only prevents HIV. Condoms help prevent other sexually transmitted infections and pregnancy. U=U applies only to sexual transmission, not to breast feeding or needle sharing. U=U may not exempt people with HIV from disclosure laws.
All that said, medicine only works if you have access to it and take it, but that can be hard to do because in many communities the social determinants of health still need to be addressed.
The challenge with communicating U=U is not to convey it in a way that shames people who are not undetectable. The message should be used as a public health argument to ensure all people can become undetectable. [Editor’s note: Click here for more on this topic.]
As for distributing our communications, we have a newsletter with resources that we send out to our partners on a regular basis. We curate the best U=U campaigns and research and fact sheets from around the world. Why reinvent the wheel when there are some excellent materials out there?
We also do media monitoring. Every day we get clips of articles that include references to undetectable or viral load suppression. We aim to correct any inaccurate or stigmatizing language.
Why has U=U succeeded globally?
It’s mind-blowing how fast the U=U movement has grown. It’s a testament to the strength and conviction of people around the world who are living with HIV and those who care about us.
Just in the past few months, I’ve had calls with folks in Vietnam, Cambodia and Romania. I’m constantly corresponding with people in Australia and New Zealand. I traveled to Canada, where the federal health minister signed the country on to the U=U campaign. Princess Stephanie of Monaco signed her country on to the campaign. In Osaka, Japan, they had a sexy U=U party. Every week, there’s more exciting U=U news.
The message has been embraced because U=U is a concept owned by everyone. People living with HIV are tired of being treated as disease vectors. We’re tired of having this virus interfere with our relationships and threaten our lives.
What are your hopes for U=U in the U.S.?
We have a lot of work to do in the United States. Public health departments are leading the way rather than community-based organizations. There are some groups that have developed U=U campaigns and are training their staff, but we’re seeing a lack of energy, especially on social media, from many groups.
Up to now, it’s mostly just individuals in the United States who are tweeting and sharing U=U on social media. Strong messaging from federal agencies has helped get us this far, but despite those efforts, we’re finding that U=U still isn’t catching on as much with the community-based organizations.
For example, I was at an HIV conference recently where I was glad that U=U had a plenary session, but among the exhibitors there was only one organization out of many that had any U=U materials. There was, however, a lot of information about pre-exposure prophylaxis (PrEP) and HIV testing.
What we need is for these U.S. groups to be proactive in communicating about U=U. They can’t just send out a statement on U=U once and expect that to have a lasting effect. They have to keep saying it, keep sending things, keep encouraging people and updating websites, just like they’ve done for PrEP.
I really hope that the end result of all our collective efforts on behalf of U=U is that we change what it means to live with HIV, so that people who test positive for the virus are seen as just having a chronic condition and not as dangerous people who should be feared.
If we keep increasing our efforts, then all people living with HIV can live happy and healthy social, sexual and reproductive lives without fear.
