World AIDS Day 2015

When we created Grindr for Equality, we envisioned education and support for sexual health in addition to our work for LGBTQ rights. Today, World AIDS Day, we proudly recommit to these efforts, which exist in a four-pronged plan for your health.

  1. Testing– We’re ensuring Grindr users around the world know where and when they can access LGBTQ-competent, anonymous STI testing.
  2. Protection– We’re sharing the most up-to-date information in the languages our users are most comfortable with so they can make informed decisions about using protection every time they have sex.
  3. Prevention– We are increasing access to STI prevention tools like PrEP, the HPV vaccine, and, someday soon, theherpes vaccine.
  4. Treatment– We are supporting Grindr users who are HIV+ to gain access to treatment. We are also committed to fighting the stigma attached to being HIV.

In the latter half of 2015, we took a deep dive into the third piece of this plan, as we sought to understand our users’ experience with pre-exposure prophylaxis, or PrEP.

For those who may not know, PrEP refers to any medication taken by HIV-negative people to reduce their likelihood of getting HIV. The most common and only U.S. FDA-approved drug in this category right now is called Truvada, which is taken daily and has been shown to be extremely effective in preventing HIV infection. In fact, the U.S. CDC just published a reportrecommending that 1 in 4 gay and bi men should take PrEP.

So along with our partners at the San Francisco AIDS Foundation (SFAF) and with help from theCenter for Disease Control and the Gilead science team, we fielded a survey and heard from Grindr users who shared their experiences. We’re very excited here to be able to share a little bit of what we found.

  • 1,213 users (25.5% of those surveyed) reported currently being on PrEP. An additional 2,655(55.7% of those surveyed) were interested in taking it in the future. Of the racial cohorts,Latinoswere the least likely to be currently taking PrEP.
  • Information. Grindr users want more general information about PrEP. 51.4% of those who aren’t on it but want to be said they didn’t know enough about it. 37.3% of those who weren’t interested in taking it at all said lack of information contributed to their disinterest.
  • Rural respondents faced a variety of increased hurdles to accessing PrEP, notably including lack of access to LGBT-competent doctors and community clinics.
  • Anxiety. 1 out of 20 respondents that were currently on PrEP rated the anxiety they had about bringing it up with their doctor at a 1 or 2 on a 5-point scale with 1 being the most nervous. 17% of respondents who weren’t currently on PrEP but want to be said anxiety about talking to their doctor was part of why they hadn’t started. 3.9% of those who were not interested in taking it said anxiety about talking to their doctor contributed to their disinterest.
  • Doctor Pushback. 1 out of 10 respondents who were currently on PrEP, reported they had trouble getting their doctor to prescribe it for them. This figure was double for Black Of those who were not currently on PrEP but want to be, 5.7% said their doctor refused to prescribe it.
  • Adherence. 35.2% of those who weren’t taking PrEP but would like to said they were anxious about having to take a pill consistently everyday. On the other hand, over 90% of respondents currently on PrEP said they had taken all seven doses over the past week.
  • Side Effects. There is some concern over immediate side effects among respondents, but there is much more anxiety about PrEP being new and the possibility of facing long-term side effects or unknowns in the future.
  • Outness. 3.6% of those who are currently on PrEP said they were not ‘out’ to their doctor. 21.2% of those who weren’t on PrEP but would like to be said not being out to their doctor was a factor. 7.6% of those who were not on PrEP and don’t want to be said that not being ‘out’ to their doctor contributed to their disinterest.
  • Health Insurance. A large majority (91.2%) of respondents were accessing PrEP through their health insurance with only 1.9% reporting they did not have any insurance. More than half of respondents currently taking PrEP were making use of Gilead’s copay or medication assistance programs. Of those who were not currently taking PrEP but would like to, 16.8% said one of the reasons was a lack of health insurance. 13.0% of those who were not currently taking PrEP but would like to, said they have insurance but it won’t cover PrEP. 19.3% of those who are not interested in taking PrEP said issues of insurance contributed to their disinterest.
  • Stigma. Among those who are currently on PrEP, only 2.9% rated their concern over stigma as “extreme” whereas 52.3% said “unconcerned.” 14.6 of those who are not currently taking PrEP but would like to said stigma played a role. 7.2% of those who were not interested in taking PrEP said lack of insurance coverage contributed to their disinterest.
  • Doctors’ Silence. Most respondents said they found out about PrEP from their friends. Only one in ten reported hearing about it from their doctor.

All of this information has helped us to craft a nuanced plan for 2016 as we increase the number of pro-bono PrEP-related in-app messages.  For example, seeing that Latinos were so much less likely to be accessing PrEP, we will prioritize the circulation of PrEP information in Spanish. And seeing that many don’t know where to get it or are nervous to ask their usual doctor, we intend to undertake a mapping project of LGBTQ clinics in the country so more people will know what their options are. We already have efforts underway to measure PrEP access and attitudes in Puerto Rico as well as among trans and gender non-conforming Grindr users across the country.

This is only the beginning of our work. Grindr for Equality has always been all-in when it comes to the health of our community. Our very own founder and CEO, Joel Simkhai will be among those featured in a forthcoming CDC campaign designed to normalize HIV testing and motivate individuals to get tested.

At Grindr for Equality, the rights, well being, and advancement of our community are our focus.  You are our tribe.  Together we are changing the world.