For World AIDS Day, let’s remember those we’ve lost to the virus but also remember that we all have an opportunity to fight it.
Today is World AIDS Day, a day that we use to remember those lost to HIV, the virus that causes AIDS. It’s also used to remember that many more people are currently living with HIV and AIDS.
For queer people, this day is especially important because it’s a reminder of what we’ve lost: an entire generation of artists, musicians, lovers, activists, and elders who had so much to give queer life and the world at large. Tens of thousands of queer people were lost to us.
Every year, we end up uncovering or rediscovering art, writing, or music created by this “lost generation”, ever reminding us of the thousands of potentials that were so cruelly and violently lost to us.
With that said, it’s important to not only mourn for those lost or lament the talents stolen from us. We also need to remember two vital things: one, the tenacity and ferocity with which queer people — both those with HIV and AIDS and those who don’t have it — fought and continue to fight against HIV and AIDS. We also need to remember that their work to get the US government to listen to their demands has been saving all of our lives, and will continue to as we discover new ways to treat and prevent the disease.
One more contribution they gave, not just to people with HIV or AIDS or people at risk to it, but to all of us, was the development of the “right to try” principle. This principle essentially states that those who have an incurable chronic or terminal illness — such as cancer or multiple sclerosis — should have the right to try anything that can potentially extend their lives, treat their suffering, or even cure their ailments.
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ACT UP, the AIDS Coalition to Unleash Power, developed a plan to create change in the way that medications were approved. The Food and Drug Administration, which is the governmental body that approves which medications can be sold for human use in the U.S. and its colonies, was targeted in a series of protests and teach-ins by the group. These protests achieved several things: first, they were successful in expanding access to treatment by removing some of the barriers that kept vital HIV medications in red tape. Second, they were able to get patients involved in the process of clinical trials. Pushing to get patient-oriented trials was probably the single most important thing they achieved. That’s to say nothing of their success in getting more money for research and care in the first place.
These clinical trials, even to this day, are assisted by people with HIV and AIDS and the involvement of people living with either has been vital in the latest discoveries of pre-exposure prophylaxis (PrEP) and the undetectable equals untransmissible (U=U) declarations. The reason that PrEP and U=U are so important are twofold. First, PrEP is an important tool in the HIV prevention toolkit.
People who take it, as long as they take it consistently, are mostly safe from HIV, especially if it’s used in combination with a condom. Secondly, U=U is equally important in preventing HIV because now that we know that once the HIV viral load is suppressed to below clinical levels, combining it with other prevention methods is certain to prevent someone from getting it. On top of that, U=U is also useful in the fight against the criminalization of HIV and AIDS. From the 1980s onward, queer HIV and AIDS activists have not given up their fight against the virus.
In the spirit of World AIDS Day, here are a few tips for queer folks who are HIV negative who wish to get on PrEP:
Find a doctor who is queer or sexuality affirming — This is one of the most important suggestions. Without a doctor who understands queer sexuality, one can find themselves judged or facing heteronormative aggressions in place of care. Additionally, many doctors still don’t understand what PrEP is or why people need it. If you find yourself in a position where you’re not out to your doctor or where you have to explain PrEP, you may end up needing to see another doctor who better understands.
Use alarms or notes to help you remain compliant to your medication – If you’re like me and have medication compliance issues — meaning if you’re unable to consistently take your medications at the times you’re supposed to — you’d probably have an issue with PrEP. To combat this, set alarms or take notes to remind yourself to take it at the designated time. If you’re noncompliant with your medication and don’t take it consistently, it may not be as effective at preventing HIV transmission.
Take advantage of financial support programs for Truvada — Truvada, the medication currently used for PrEP, can be prohibitively expensive to pay for out of pocket. Some insurances, and potentially Medicaid, can pay for the medication but it also might not. Applying for the Gilead Advancing Access program can help you save money on the medication. Similar programs will probably exist for any medication that replaces Truvada as PrEP.
For World AIDS Day, let’s remember those we’ve lost to the virus but also remember that we all have an opportunity to fight it. In fact, it’s our responsibility to the lost for us to keep fighting it. One day, HIV will be eradicated like smallpox if we all do our part.