I am a mom to five kids between ten and twenty-one. One of my sons is nineteen and gay. He came out at sixteen in a home where he had been raised in a devout evangelical setting. Our family life revolved so much around our activity level in our church that I knew only one openly gay person before then, so you can imagine how uninformed I was about the LGBTQ community in general. That didn’t last long though because I knew I needed to get to know some LGBTQ people so I could understand what their lives were like, and what my son’s future might look like. The only way I could learn was to leave my little bubble and venture off to different places where I knew I’d be able to develop relationships with LGBTQ people or pick up literature at events like Pride.
One of those events was AIDS Walk Los Angeles. It was there I met [A&U Senior Editor] Sean Black, whom I eventually got to know over dinner. Sean shared with me that he was HIV-positive and since then, I refer to him as “My Forever Friend.” He has played a priceless role in helping me emerge out of my myth and fear-based fiction to a fact-based awareness, educating me about many things, PrEP, or pre-exposure prophylaxis, being one of them.
I knew I wanted to find this prevention medicine for my son. I thought it would be as simple as getting a girl on the pill. It was actually pretty challenging. It doesn’t have to be that way for anyone else.
The hard part wasn’t getting my son to comply or become educated. From the time my kids were little, we have had a running dialogue about sex and sexuality in an effort to maintain open communication about the topic. I wanted to set them up to have a satisfying and safe sex life as adults and felt the chances of that were higher if we made the conversation casual and important, instead of awkward and uncomfortable. Then came the days when I realized some of my kids weren’t waiting to become adults to have sex. Thankfully, we’d developed this relatively open relationship. I think their willingness to come to me or to dialogue would have been greatly hindered if shame were something I brought into the conversation. At some point, I realized they needed to hear me say, “No matter when you choose to have sex or whom you choose to have it with, you should know those decisions don’t define you, or how I feel about you. You are more than your sexuality. You are mine and valuable simply for that reason.” After that, I found out plenty of stuff I sometimes wished I didn’t know; however, no effective parent sticks their head in the sand about what their kids are up to. All the more reason for us to pursue the best route for safe sex. So, I told my son to become educated about PrEP.
Finding a doctor who would write a prescription for PReP was the biggest struggle in all of this. I have a fantastic group of physicians from which to draw. I should have called to ask if they prescribed PrEP before visiting. Not one of them had even heard of PrEP! These were the people I hoped would teach me more about this medicine. Instead I’d end up saying, “You know? PrEP? That drug that somehow keeps you from getting HIV?” No. They really, truly didn’t know. Only one doctor said to me, “What is the name of that medicine? I’ll learn about it tonight.”
I got tired of striking out. One day my son and I took off for an LGBT center in search of help. They gave us a whopping three names of doctors they were familiar with in Orange County who prescribed PrEP. Three names. I’ve since found there are more.
I made my son make the appointment because I wanted to begin to hand over the responsibility for his health to him. We discussed that PrEP wasn’t a license to run off with any ol’ person from Grindr, which he knew was never safe anyway, but it still needed to be said. This medicine wouldn’t protect against any other STIs. It absolutely had to be taken very consistently. However, if he was old enough to be engaging in sexual activity, he was old enough to be the one to be responsible for safeguarding his health. His healthcare and self-care was to be taken seriously.
The day came for us to meet Dr. L. Thomas Lochner. He is an internist, but also specializes in HIV. I must say that Dr. Lochner was worth the wait, and I could see, as I’d heard it would, that seeing someone who regularly treats many gay men would indeed make a big difference. I didn’t know how relieved I, as a parent, would feel to know my son now had access to Dr. Lochner, who could be available to address every aspect of my son’s health.
I couldn’t believe it was 2017 and we lived in the U.S., and still it took this much to get treated to receive PrEP and get a prescription written! That need not be the case for you. I went back to meet with Dr. Lochner and he shared some information that would have been really helpful for me to have known when I was pursuing help finding PrEP.
Allie Oakes: How can people find a doctor who prescribes PrEP?
L. Thomas Lochner, MD: There are PrEP websites in more populated areas that reference prescribing and knowledgeable doctors. Another website is AAHIVM.org, the American Academy of HIV Medicine. Anybody who is knowledgable about HIV is going to be knowledgeable about PrEP. It makes their job much more fun to be treating someone for prevention, rather than treating HIV.
What should people know about the process of getting a prescription for PrEP and taking it?
Any primary care doctor can prescribe it. The patient comes in and says they’re interested in PrEP. The directions are one pill daily. Initially before they start the drug, you need to make sure they are still HIV-negative because it would be inadequate to treat someone who has HIV with that alone. You also check their kidney function baseline. If they’re HIV-negative and kidney function is normal, then they go ahead and start. They have to be over eighteen. Very rarely, they may have some loose bowel intestinal problems [but] that goes away for most people. Every three months afterwards, you’re supposed to get retested for HIV and have your kidney function rechecked. It works to prevent HIV [most effectively] if you take it faithfully. Human nature is that very often in the beginning, we’ll be very good at [adherence], and then we tend to lax over time, so I usually recommend that people use a weekly Sunday through Saturday pill box. Once a week, they put a pill in each box, close them obviously, and if today was Tuesday and you look in the Tuesday box and see that pill is still there, then you didn’t take it. That is the best we can do to make sure that you take it faithfully.
Is there anything people should consider?
Since we have been prescribing PrEP for the last year and a half or so, we have seen a huge spike in the number of other sexually transmitted diseases. Syphilis—we didn’t see syphilis for years, and now I probably see one person a week on the average. I literally hadn’t seen it for years. Gonorrhea. Chlamydia. Those are the big three that I see a lot of. [Editor’s note: Sexually active individuals could use condoms in addition to PrEP to help prevent STIs.] I was at an HIV conference and we were talking about whether or not PrEP should be used because it might encourage more people to have unsafe sex, and the lecturer said to a room of doctors, “Well, let me put it this way. If you had a vaccine that you could give everyone to prevent them from getting HIV, wouldn’t you do that?” and the answer was, “Well of course we would.” This is the next best thing to a vaccine that prevents HIV. Unfortunately, human behavior is such that we won’t always take it faithfully, and we are more likely to have unsafe sex, especially adolescents.”
I’m incredibly grateful for the many LGBTQ people in my life who were willing to let me ask questions, and who could point me to resources that gave me the chance to open my mind and heart, growing as an individual, and especially as a mom. If Sean hadn’t been willing to sit with someone who knew almost nothing of the LGBTQ community, my son wouldn’t be protected today. If my young, gay friends hadn’t said to me, “Go to the LGBT center!,” I wouldn’t have found the doctors’ names when I did. If Dr. Lochner wasn’t willing to let me come back and ask questions, some of you might not have such a clear path as to how to pursue PrEP.
It took several people giving their time and energy, but now, you all have this information and you can share it with someone else! That’s so exciting! Giving young people the knowledge of how to become protected should make us all feel a little better!
This is real life as an involved parent. We can model making choices as individuals for our own care and the care of our kids that set us up for making this the best life possible in every way. Influencing and educating our kids can be difficult enough without worrying about their health! I can say, “Goodbye” to worrying now that I’ve finally been able to say, “Hello!” to PrEP.
Allie Oakes, forty-two, lives with her kids in Orange County, California. Her son, Cooper, has been out for three years and she celebrates him and every LGBTQ person, as she does her other kids. She speaks and writes about the radical transformation that occurred in every area of her life when she began to see the LGBTQ community through the eyes of a mom. To learn more about how she became unable to contain her love for all, especially the marginalized, visit her website, www.madeofonyx.com, where she also offers information she wishes she and Cooper both had when he came out.