Photo credits: Freya Luna
The first time I learned about the HIV virus and AIDS, I was a child in the nineties. I was fascinated by this virus, its ability to mutate and our inability to find a cure. Fast forward 20 years later, and I find myself in a position where this virus is real to me, not just something I read/heard about.
When I first found out that the man I had fallen in love with is living with the virus, I felt like I had been punched. I wondered if we would be able to have a normal relationship and lead a normal life: be able to get married, have children, and grow old together. I didn?t know enough about the virus to make an educated decision. I also didn?t have anyone I could talk to about this, so I searched the web for answers. This is how I learned about serodiscordant couples, pre-exposure prophylaxis (or PrEP), antiretroviral therapy (ART), being undetectable, and also realized how little resources there are for people like me, that are ?negative.?
When I first approached my OB/GYN to let her know I was in a relationship with a man living with the virus and wanted to know what resources were available to me (other than condoms) to protect myself, she didn?t know. When I told her about Truvada (PrEP) and asked her to prescribed it, she said she didn’t know if she could prescribe a medication that she hadn’t heard of that and that she would check with a friend of hers that was an infectious disease doctor and let me know. That was nearly a year ago and to this day I still have not gotten a prescription.? When I asked her why there were so little resources for people like me who are HIV negative and in relationships with people living with HIV, she said that we didn’t live in an ?at -risk community.?? My partner also faced similar hardships in his home town, he didn?t fit the profile of an ?at-risk? man so there was little support available to him.
After my experience with my OB/GYN, I didn’t think that my primary doctor would have the answers either. I contacted an infectious disease doctor?s office and a local center that provides resources for people living with the virus and I was turned away because I’m not HIV positive.? I asked my partner to talk to his doctor to see if he would prescribe Truvada, but his doctor said he wouldn?t prescribe it because it would encourage risky behavior (i.e. having ?unprotected? sex).
Despite these obstacles, I was not discouraged. I continued my research online in hope I could find an organization that could provide answers to my questions. This is how I came across HIVE, and decided to contact them to find out if they could refer me to anyone in South Florida that could help me find the information I needed and let me know how I could get PrEP. This is how I met Caroline Watson who promptly answered my e-mail and provided the contact information to a clinic I could go to.
I think if we truly want to remove the stigma associated with this virus, resources should not only be available to a demographic group that is deemed ?at-risk.?? Also, medical professionals should not decide who should have access to PrEP or who shouldn’t.? This flawed logic reminds me of how it was once argued that we shouldn’t give condoms to college students because we are encouraging them to have intercourse hence, we should not give access to PrEP because we will encourage ?unprotected? (condomless) sex.? I should be allowed to be responsible for my own reproductive health and I?m appalled at the fact that it has taken me over a year to get the answers I need.
When I finally got the appointment at the clinic, meeting the nurse was a wonderful experience. Being able to talk to someone that is knowledgeable about living with the virus, who could answer questions about pregnancy and breastfeeding, and helping me be sure of what I already knew: this is not the end of the world.
Unfortunately, I haven?t been able to get PrEP as it is still not as accessible as I wish it was. First, I?m trying to check if I can participate in a study at that clinic that provides it and does the follow-up. If that doesn?t happen, then I?ll be provided with the contact to another office which will prescribe it, and finally, I will have to figure out if my insurance will cover it. That?s a whole other battle.
A year ago my partner thought I would run to the hills when I learned about his status, but knowledge and LOVE are a powerful combination.
Information and Resources from HIVE
As PrEP training and implementation roll out across the U.S., we are wondering how the 468,000 women who may benefit from PrEP are finding out about this new HIV prevention method, what they think about it, and what barriers remain. Applause for clinics who are routinely offering PrEP to women, including trans women. And applause for women who are thinking about what PrEP might be to them.
We are on a journey, learning and growing together. Want to share your #WheresMyPrEP story??Looking for a platform for your voice? Interested in helping others by sharing your story? We can work with you if you prefer to be anonymous. No professional writing skills necessary. Contact Caroline@HIVEonline.org.
See below for resources on PrEP.
New Study Shows PrEP is as Safe as Aspirin
Is PrEP Right for Me? A Guide for Women
?PrEP can cause side effects like nausea in some people, but these generally subside over time. No serious side effects have been observed, and these side effects aren?t life threatening.? ?CDC.gov
?PrEP allows a woman to control her own destiny by not having to rely on her partner?s behavior, his ability to take antiretroviral therapy, to have an undetectable viral load, to get tested. These benefits far outweigh the potential risks [of PrEP] for many women.? -Erika Aaron, CRNP, Drexel College of Medicine
Such a shame that it is so hard for us to get this medication that is proven effective in our type of relationships. My now fiancee thought i would run, actually hoped i would when he found out he was HIV+. we had not be together sexually yet at that time, and was scared, i did my research, was difficult and took a while but i was finally able to get prescribed PreP and we now have a 5 month old Prep Baby. thank you for sharing your story, maybe one day we can say it USED to be hard to get the medications we need.
Reposted for Freya, minus her photo (at her request):
Hi Jessica! Thanks for sharing! It’s always great to know that we are
not alone and that we can also look forward to having the opportunity to grow our family one day. I also agree with you and hope that one day we can say “it used to be hard to get the medication we need.”
So glad to read Freya giving voice to an experience that’s, tragically sometimes, too common among those of us deemed at substantial risk (cis queer male here) right along with those society might not. I went through many of the same obstacles that you mention (including the roughly one year effor before getting a prescription) and was ultimately successful. Can’t wait to read your “wonderful” blogpost about finally getting, using the prescription, and moving right along with life, your hunny bunny, the kids, and what really matters after putting this concern to rest! 🙂
Thank you for reading! I?m glad you were able to finally get the prescription! I?ll keep on writing. I?m glad there?s this community we can count on and realizing we are not alone is so powerful.
Hi Freya. Where in South Florida are you? I’m in Fort Lauderdale and there might be some resources here to help you. Feel free to contact me at Robert.Shore@flhealth.gov . 🙂
HI Rob, I’m in the same area. Thanks for providing me with your contact! I’ll send you an e-mail shortly. I’m currently under a study with the University of Miami and they have been extremely helpful. I will be writing an update on the last blog today. 🙂
So glad to hear that. U of M has a great resource – Dr. Susanne Doblecki-Lewis.
Hi Freya, you don’t tell in your post that your partner is on ARV-Treament. If he is on, do you know what TasP is ? I’m sure that you know that. And… why is not this form of prevention good for you? Certaintly i want to know your point of view about this.
HI Iv?n! Thanks for the comment. Yes, he’s on ARV- Treatment. I’m not sure what you mean by using TasP. Do you mean relying solely in the fact that he’s under ARV treatment for protection? If that’s so, I personally, didn’t feel safe enough with relying solely on his treatment. I wanted an extra layer of protection (if that makes any sense).