Statement on 4/21 New Member Meeting

There is nothing special about ACT UP’s new member meeting getting virtual-bombed yesterday. These types of attacks are what trolls do, and have done, to people all over the world, for many years. Nor is it the first time ACT UP has been trolled. It is frustrating that this instance is getting more attention because it happened to a well-known group at a time when many people are just beginning to use video conferencing. It is likewise frustrating that we are getting more attention, because we are well-known, than people who are less familiar with trolling and therefore not as equipped to cope with it, like the countless elementary school kids and religious minority groups who’ve had their discussions interrupted over the last several weeks.

But the ultimate frustration is that there is still an HIV epidemic. We have had medications, for years, that stop people from both getting and transmitting HIV. If we know how to prevent transmission with nearly 100% effectiveness, why are there still over 35,000 new HIV diagnoses in the U.S. every year? Because of a lack of education, funding, and resources, and because of structural inequalities.

The COVID-19 epidemic is exposing these systemic flaws to many people who have not noticed or experienced them before. We’ve been working on addressing these problems for over thirty years, and, though we’ve made a huge amount of progress, there is still work to be done. That work cannot be done until there is adequate pressure — pressure the media can help provide — on institutions to rectify deficits and inequalities in our public education and health systems.

Because the purpose of our video meetings is to discuss HIV and COVID, we ask that all media coverage of this incident link to this statement, and include something from the following list of information:

• Many people are silent carriers of COVID, who can be asymptomatic for weeks. Most Americans now understand this, so now is a good time to teach that it is possible to have asymptomatic HIV for more than a decade — you don’t “just know” if you have HIV. The fact that it can take ten years to show symptoms of HIV is not taught in schools, which is likely why nearly half of HIV+ Americans under 25 don’t know that they have HIV. If you don’t know your HIV status, you’re at higher risk of dying from COVID. When it is possible, everybody should get tested for both HIV and COVID-19, even if you have no symptoms of either one.

• PrEP has been available since 2012. It’s far too expensive, but it exists and it works better than condoms for preventing HIV. Current CDC guidelines are worded so that PrEP is much easier to get for men and trans women who have sex with men than for other groups, which discourages women and trans men from taking control of their sexual health. This is unacceptable and the guidelines must be updated.

• Currently, PrEP is patented by Gilead Sciences in the United States, despite having been researched with American tax dollars. Gilead has been price-gouging Americans for years, charging over $1700 per month in 2019 for medication that costs $6 a month to make, and is available in other countries for only $8 a month. This type of gouging drains Medicare and Medicaid budgets. Gilead is now developing treatments for COVID-19, and we must be vigilant to ensure they do not repeat these predatory practices.

• The PARTNER II study confirmed something AIDS activists had suspected for years: that people with HIV who have an undetectable viral load, which is attainable by simply taking HIV medications consistently and correctly, cannot sexually transmit HIV at all. This is frequently referred to as “Undetectable = Untransmittable” (U=U), and is also more effective than condoms for preventing HIV transmission. Treating people with HIV (or COVID) as though they’re dangerous undermines public health. There are many ways people can prevent HIV, and many ways people can prevent COVID, and we should not be shaming people or fixating on one-size-fits-all prevention methods.

• Finally, unlike COVID, HIV cannot be transmitted by coughing, sneezing, kissing, or spitting. Laws and OSHA policies criminalizing these acts stigmatize people with chronic illnesses, and reduce people’s willingness to learn their HIV status and stay in treatment for HIV.

Although this is still tentative, we will most likely be holding these educational webinars biweekly until New York City’s lockdown is over. If you are unable to attend a meeting, we recommend the following resources on some of the many structural issues impacting both HIV and COVID-19.

Suggested additional resources:

• United in Anger, 2012 film (Available on Amazon Video, Kanopy, and Youtube for streaming)

• The Body “COVID-19 and HIV Are Not the Same. But They’re Similar in Many Ways That Matter.” article https://www.thebody.com/article/covid-19-aids-not-same-but-similar-in-many-ways

• BBC “Coronavirus: Why some racial groups are more vulnerable” article that has data from around the world about COVID racial disparities, most of which can also apply to HIV: https://www.bbc.com/future/article/20200420-coronavirus-why-some-racial-groups-are-more-vulnerable

• Know Your Options: Pregnancy/HIV Prevention Poster