U=U is a blessing: but only for patients with access to HIV treatment: an essay by Tamás BereczkyBMJ 2019; 366 doi: https://doi.org/10.1136/bmj.l5554 (Published 17 September 2019) Cite this as: BMJ 2019;366:l5554
- Tamás Bereczky, communications and course director
The U=U campaign (undetectable means untransmittable, see box) seeks to publicise the science that shows that people with an undetectable viral load cannot transmit HIV.1 But my limited enthusiasm for this good news often earns me the scorn of fellow HIV activists.
“Don’t be such a sour apple,” they say. “Don’t you understand the importance of U=U for stigma reduction?”
I know, sadly, that the message is often still missing from the information that healthcare providers and counsellors give patients.23 Worse, U=U is meaningless for the many people with HIV worldwide who don’t have access to diagnostics and drugs—as the campaign acknowledges with a “third U” that represents universal access.
Fear of transmission
I’ve had HIV for 16 years, and I come from Hungary where stigma and discrimination are rampant.4 I understand, particularly acutely, how fear of transmission prevents acceptance of people with HIV—and why it is so important to eliminate this barrier.
In 2008, the Swiss National AIDS Commission gave a statement that said that people who are taking effective antiretroviral treatment cannot transmit HIV through sexual contact.5 When I heard this, my initial scepticism ultimately gave way to genuine relief: I didn’t pose any risk to my partners.
Communities of people with HIV worldwide have translated the U=U abbreviation and message for their own languages and settings.
The consensus statement
The U=U consensus statement has been signed by an impressive group of organisations, researchers, and politicians.
It says, “People living with HIV on antiretroviral therapy with an undetectable viral load in their blood have a negligible risk of sexual transmission of HIV. Depending on the drugs employed it may take as long as six months for the viral load to become undetectable. Continued and reliable HIV suppression requires selection of appropriate agents and excellent adherence to treatment. HIV viral suppression should be monitored to assure both personal health and public health benefits.”6
Thus it acknowledges the importance of treatment and diagnostics—but it is silent about how treatment adherence should be achieved, especially if access to drugs is lacking or unreliable.
The website of the U=U campaign contains a separate page about the “third U,”7 universal access: “Our challenge for the U=U community is to continue to fight for universal access for all people with HIV regardless of what barriers may exist and regardless of where they may live.” It offers no proposals, however, for how to attain this.
Lack of access to testing
People with HIV are advised to have their viral load tested every 3-6 months.8 Most tests measure a minimum of 40-50 copies of HIV RNA in a millilitre of blood. Most people receiving effective antiretroviral treatment have a viral load of fewer than 20 copies. The UK and most of Europe define undetectable viral load as fewer than 50 copies,9 when evidence shows that transmission of HIV becomes impossible.10
This has revolutionised thinking: the infection remains incurable but transmission can be stopped.
Standard bulky laboratory devices require substantial initial investment and can be slow because they test one batch at a time. Without reliable, affordable, and portable devices, regular testing remains a challenge.11
Despite research initiatives and encouraging news in recent years, no novel equipment has been developed. One portable device can be used at the point of care but it is expensive.
Some European Union countries, such as Greece, lack consistent reliable viral load testing.1213 Others lack testing altogether—for example, Serbia stopped viral load testing three years ago, activists there say. So, many people with HIV cannot know whether their viral load is undetectable unless they have the financial means to get tested abroad or through a private laboratory.
Lack of access to antiretroviral drugs
The U=U message has rightly spread like wildfire through patient communities, but people with HIV in some regions, like eastern Europe and central Asia, that lack reliable access to affordable drugs can only dream about having untransmittable HIV.
The UNAIDS 90-90-90 global targets14 are the benchmark for ending the epidemic. Their aim is that, by 2030, 90% of all people with HIV should know their status; 90% of all people diagnosed should be having antiretroviral therapy; and 90% of all people receiving treatment should be virally suppressed.
Despite some regions making great progress, we’re miles from achieving these goals.1516 In 2017, the rate of people receiving treatment in Russia, for example, was 42%,17 and the rate of people who knew their status was also low.18 Some Russian territories have regular stock-outs of drugs, as do many countries including Romania, which has exceptionally high prevalence of HIV infection.19 A 2018 study of treatment in central and eastern Europe reported stock-outs in nine out of 23 countries.20 It also found huge discrepancies in access to drugs because of affordability.
UNAIDS recently called for a scaling up of the response to achieve the 90-90-90 targets.21
Leveraging the message
Activists in developed countries have said that advocates in regions lacking access to drugs and testing should use the U=U message to call more strongly for improvements. But this ignores the political, social, and cultural contexts in which people with HIV live.
The U=U message has spread readily among communities, but political barriers often make it impossible to be more vocal without advocates risking their liberty and physical integrity. Ideological dogma also acts against people with HIV as well as men who have sex with men, injecting drug users, sex workers, and prisoners—that is, the key affected populations.
Take Russia’s anti-LGBT laws,22 state sanctioned homophobia in Poland23 and Hungary,2425 the lack of or cuts to harm reduction services for people who use drugs,26 and increasing new HIV diagnoses in eastern Europe and central Asia.27
Such cases suggest that an information strategy alone, like U=U, may be insufficient to achieve universal access to testing and treatment. But—as I know—perceived criticisms of U=U are often quickly shut down with verbal attacks, worryingly these are often sexually explicit.
What U=U should do
But enough of the complaints—I also have some suggestions. U=U supporters should emphasise that access to drugs and diagnostics is as important as access to the U=U message.
Large and effective patient and civil society organisations such as the European AIDS Treatment Group, the Terrence Higgins Trust, the International Treatment Preparedness Coalition, and the International AIDS Society are fighting for reliable and affordable access to drugs. U=U campaigners should consider collaborating with them.
The U=U movement should demand more research to improve the evidence on simplifying and optimising treatment regimens. More affordable drugs and diagnostics, and consistent access to generics, could mean more people get treatment.
U=U campaigners should advocate for the development of easy to use, reliable, portable, and affordable viral load testing. HIV patients’ advocates and communities have an excellent track record in initiating and supporting scientific research. We should reach out to researchers and try to understand why development in this area has stalled.
What is U=U?
The Prevention Access Campaign was launched in 2016 by a group of HIV activists led by its current founding executive director, Bruce Richman.
Its U=U movement aims to “end the dual epidemics of HIV and HIV related stigma by empowering people with accurate and meaningful information.”
It does this by disseminating “the revolutionary but largely unknown fact that people living with HIV on effective treatment do not sexually transmit HIV.”
It also proposes a “third U,” universal access, and calls for access to HIV drugs for all who need them.
The U=U consensus statement has been endorsed by over 850 community organisations from nearly 100 countries.
Many public health institutions, researchers, politicians, drug companies, and non-governmental organisations, including UNAIDS, support it.
Its website (www.preventionaccess.org) presents evidence and publicity materials, and states it is funded by the US charity Social and Environmental Entrepreneurs and supported by Broadway Cares/Equity Fights AIDS, AIDS United, Gilead, ViiV Healthcare, Janssen, Elton John AIDS Foundation, and Walgreens.
Tamás Bereczky works for the European Patients’ Academy on Therapeutic Innovation, while also supporting, as a member, the European AIDS Treatment Group (EATG).
He has been HIV positive since 2003.
He was an EATG director for almost four years, was co-chair of the European Commission’s Civil Society Forum on HIV/AIDS between 2013 and 2015, and has been involved in many EU and global projects.
He has been a member of the BMJ Patient Panel since 2017.
His research as a social psychologist concerns the significance and perspectives of patient organisations in Europe. He is a PhD candidate of the ELTE University of Budapest set to defend his thesis late in 2019.
Provenance and peer review: Commissioned; not externally peer reviewed.
Competing interests: I have read and understood BMJ policy on declaration of interests and have no relevant interests to declare.