Let’s raise awareness about the HIV prevention tool less talked about
by Allie Oakes
Happy New Year from my family to yours! Resolutions anyone? I tend to make resolutions every month now that my five kids are growing up and I can actually think about what else I’d like to do with my newfound time! However, I can’t seem to get away from wanting part of my time to be spent attempting to improve the lives of everyone’s children. One way I do that is by sharing what I learn from my fairly unique experiences as a mom so that others who may not be having these experiences can be intentional about their own lives.
In my first article for A&U regarding the difficulty of accessing PrEP (pre-exposure prophylaxis) for my son, I discussed prior illnesses that threatened my kids’ survival. I mentioned that those battles led to my appreciation for good health. I’m writing again to spread the word about PEP (post-exposure prophylaxis)! I went to Santa Ana, California, and visited RADAR, a satellite facility of Radiant Health Centers to gather information. RADAR offers HIV and hep C testing and gets those infected linked to care, among other things. Manny Muro is an HIV Prevention Educator (and was also Mr. Gay Pride OC 2016/17). Here is a window into our conversation.
Allie Oakes: Manny, tell me about what PEP is and why we need it.
Manny Muro: PEP stands for post-exposure prophylaxis and is a HIV prevention drug. PEP was originally created for people who had been exposed [or potentially exposed] to bodily fluids [of an individual who is HIV-positive or may be] as a result of their occupation, like doctors and nurses. Now, it is also being prescribed to people who are seeking it for their own emergency care. Perhaps they have had sex with someone who was possibly living with HIV. They find themselves considering accessing this medicine. PEP is only effective if you take it within seventy-two hours of the sexual encounter, and the sooner the better. The longer you wait, the less effective it is. Once prescribed, it is typically taken once or twice a day for twenty-eight days.
For many, it isn’t easy to tell someone details about how you may have become exposed to HIV, especially if you were sexually assaulted, have shared needles, or had condomless sex. Often, people don’t want to report those things to the police, but they want to go to the hospital.
It is important that PEP be easily accessible. Many people who need PEP are unaware of it, don’t have insurance, and at times, some don’t even have transportation to a medical provider. Accessibility becomes a big issue. All these factors come into play but because of the lack of resources and knowledge, it is really difficult for people to access this medicine. Some don’t have access to PrEP, let alone PEP. PEP could become their last hope to remain free of HIV. We need to preach just as hard about PEP being something to take after a sexual encounter as we do about PrEP being something to take before sexual encounters. That way people will be tested to find out if they have been exposed to HIV, and if they have, ideally they will know what can be done about it. Again, if they pursue PEP within seventy-two hours, it may not be too late to prevent becoming infected. We need to work harder to get both of these medicines into peoples hands.
I totally agree. We’ve spoken before about everyone not always having the presence of mind in these situations and needing step-by-step instruction. Talk to me about this kind of instruction.
Go to the emergency room. Prepare to advocate for yourself by making a commitment to yourself to speak with complete honesty with your nurses and doctors about whatever activity occurred. Some people feel embarrassed about saying they just had unprotected sex. Don’t be afraid to take yourself out of your comfort level for the sake of your future well being. It will be easier to insist upon getting good care and being taken seriously. There, [healthcare workers] will give you a blood test for HIV, STIs and any other required tests. If needed, they’ll prescribe PEP, and then most likely suggest a follow up appointment.
If you are concerned about any of this, talk to your own GP if time allows. You can also go to www.radianthealthcenters.org to access further instructions found on our PEP card (available in English and Spanish). The card also has a number you can call for more information about how you can access PEP. But remember, if you need immediate care, heading to the ER where they can not deny services for emergencies is the best option. Some counties are providing resources to help pay for PEP. Gilead Sciences, the makers of [the drugs currently used for] PrEP and PEP, has a copay card on their website. Do not let anything deter you, especially the price. It is much more costly than to deal with the infection for the rest of your life, not to mention all the potential illnesses for which being HIV-positive puts you at risk. There is no cure for HIV. Until the day comes when we have a cure, we have PrEP and PEP.
Some kids here in California don’t know they have a right to be treated without parental consent. What does access look like?
Planned Parenthood does STI testing and will sometimes provide PEP and PrEP. Find your local organization for services by going to www.pleaseprepme.org.
HIV affects everybody, yet there are certain communities that are more highly impacted than others. The African American MSM (men having sex with men) community in the South—look up the stats—it’s a huge disparity. All people have to find their grass-roots organizations and not be deterred by lack of funding or lack of someone else’s knowledge. A lot of things play into HIV infection rates. There are people, places, and safe spaces that will help you through that process. You just have to do your part by figuring out how to get your needs met.
I, for one, am a Latino man who has sex with men, and that means [according to the CDC estimate] I have a twenty-five percent chance in my lifetime of contracting HIV. That is why I am doing what I am doing. This is who I am, and Santa Ana is my community. I do not want that happening to me and I do not want that happening to anyone in my community. I am advocating because I am that person.
The message starts at home, talking to your family and friends. Maybe one day there will be commercials about [PEP], but for now there aren’t. It is a slow process, but again, we start by having those difficult conversations at home with those you care about. People aren’t often comfortable talking about sex or their drug use at home. So many homes don’t have a culture where people feel free to talk about their sex lives or their drug use. Situations will arise and this quiet culture in our homes and communities furthers the transmission of HIV. There is no open dialogue, especially between adults and people of a young age. Too often, a result of no safe dialogue is fear and lack of knowledge, and those two make it impossible to lower infection rates. All communities are affected by HIV so all communities should be talking about it.
PEP is a great option for people who didn’t have the option of PrEP beforehand. It’s not too late as long as you haven’t passed the 72 hour window, and PEP is highly effective.
Now that you know about PEP, ask yourself some questions. Are our communities helping the fight against HIV by creating judgment-free spaces in which sex and drugs can be discussed by people of all backgrounds and ages? Are parents and other influential adults educating our kids about stranger danger, the need for education, finding a sense of purpose, emotional and spiritual wellbeing, the importance of community and family, and how to acquire life skills? Then why aren’t more parents and influential adults educating youth about protecting their bodies so they actually have a choice? I encourage you to ask yourself how you can be a voice that raises awareness in what is truly a fight against culture and against HIV.
It’s not too late to make 2019 a year in which you make your life count in simple and practical ways as a person who wants to be a part of that fight. Even if it means you’re only taking care of yourself! Others may find themselves with the capacity to be proactive in a different way by normalizing the conversations that need to take place, or making statements through social media. Some may even realize the need to approach local schools to look at their sex ed programs and find out what needs to be done to make sure PEP and PrEP are included, not to mention advocating for sex ed that is educational for straight and LGBT+ youth.
By reading this article, you have already taken a step in the battle to end AIDS. How can you now impact the health of another person in 2019?
Allie Oakes, forty-three, lives in Orange County, California. She has five kids and her oldest son, Cooper, surprised her a few years ago by coming out at sixteen. She speaks and writes about the radical and systemic transformation that occurred in her life when she began to see the LGBT+ community through the eyes of a mom. She is the founder of Made of ONYX, whose mission is to better the lives of LGBT+ youth and their parents. To learn more and connect on Instagram, visit www.madeofonyx.com.