Worried about HIV? What you need to know about PrEP

| Jan 1, 2018

As a transgender person, you need to be knowledgeable about PrEP. Do not be embarrassed if you do not know about it. Many people, including medical professionals who should know better, have no idea what it is. You do not need to go door to door or talk about it to everyone you meet but if the subject of HIV/AIDS comes up, you need to spread the word about PrEP. Why do you need to take the responsibility for knowing about it? (1) Because transgender people have a high rate of HIV infection compared to other groups and the reputation of the whole trans community suffers from it (2) there is the possibility that you could save a life and (3) history has shown that you cannot rely on government health officials to spread the word to doctors who treat patients or to patients themselves.

You need to know about PrEP (pre-exposure prophylaxis) because of the unacceptable frequency of HIV in the transgender population and the U.S. population at large. Here are the stark numbers. Overall, there are 1.2 million people including transpeople infected with HIV in the U.S. and this number increases by 50,000 each year. Nearly 1 in 8 people in the U.S. are infected with HIV and do not know it. As for transgender people worldwide, about 20% of trans women are infected with HIV. The rate is lower in the United States but there are groups of people (e.g. transgender prostitutes) who have much higher rates than the average. (Curiously, cisgender prostitutes seem to have a lower infection rate than transgender ones.) Because transgender people have such high rates of infection, all transgender people are stigmatized.

WARNING SCIENCE AHEAD: Here is the science which you may already know: HIV (human immunodeficiency virus) is a chemical agent (containing a smidgeon of genetic material) that takes over some of the cells that protect you from infection, deactivates them and uses those cells to produce genetic material that proliferates to other cells. That chain reaction creates a “viral load” of HIV that can destroy immune system effectiveness. As if this were not bad enough, the virus rapidly mutates or changes its structure, making it hard to develop a vaccine (Vaccines “teach” the immune system to recognize foreign agents based on their structure.) It is worthwhile confirming that there is currently no vaccine to prevent or cure HIV although research is underway. HIV is still killing people and endangering others and not just in the homosexual community. The good news is that medicines can lower the blood level “viral load” to near zero if taken regularly and most people who contract the disease will survive and lead normally long lives if they faithfully take their meds.

So, what is PrEP? PrEP (typical brand name, TRUVADA) is a pill that a person takes once a day for protection against HIV. It is for those who are sexually active and might contract HIV. The drug is similar or identical to that used to treat HIV, except the drug is used to prevent the HIV virus from taking hold rather than lowering existing HIV levels. Side effects are minimal. To get PrEP, you will have to have an initial negative test result. To keep getting PrEP you will have to be tested every 3 months. A small price to pay for peace of mind.

Here are a couple of scenarios that illustrate the role of PrEP.

Scenario 1. So, you are cruising along having a marvelous sex life with someone you love. You both find out that your partner has HIV. What do you do? Well, of course, you love that person and the first thing you do is get them treated. At the same time, you get yourself tested and set up a regular testing schedule for both of you. Do not be afraid of testing for HIV. They can now provide results within a few minutes whereas it used to take weeks. Your partner probably should go on drug treatment to suppress the disease. You, of course, you will use all the conventional prophylactic protective measures (e.g. condoms, dental dams) when you have sex (maybe you should have been using them all along). But none of these measures reduce the risk to zero. Is there something else you can do to protect yourself? Yes, you can find out about PrEP, get it, and take it daily.

Scenario 2. You are very sexually active and have potential exposure to HIV from multiple partners. (Public health is not about moralizing, just about advising you that the science says that you are more at risk with more partners). What should you be doing? You should get regular HIV tests. You should ask your partners to get tested regularly and to tell you immediately if they have contracted HIV. You should use prophylactic protection with all of your partners. Finally, you can take PrEP daily to give yourself more protection.

PrEP clearly has a role in protecting people at risk in reducing the spread of HIV, and something that federal and most state governments will not tell you: YOU CAN GET IT FOR FREE. So why don’t people know about it or get it? Most doctors probably will not ask about your sex life or whether you are at risk for HIV unless you volunteer the information. Even then, most doctors don’t know about PrEP although any doctor can prescribe it. Typically, the doctors who know about it are those who already treat HIV and other infectious diseases. (Forget about the stigma of going to them, they keep secrets better than most.)

The Federal HHS does have a pilot outreach program to provide information about PrEP in eight states, including my own state of Georgia (which ranks 5th in numbers of HIV infections.) But the program, CAPU.S. (Care and Prevention in the United States), seems aimed at educating government officials about PrEP, rather than working doctors, and patients. The Federal and CAPU.S. websites are not written for patients and there is no outreach program to patients as part of CAPU.S.. As far as I can tell, the information has not trickled down (or out) to the population. Where are the public service announcements (PSA) and popular media interviews, billboards, and social media outreach efforts? There are CDC PSAs on HIV but they are pretty vague about HIV and do not mention PrEP at all. I did see a flyer for PrEP in one doctor’s office but it was from the manufacturer and this particular doctor specialized in treatment of patients with infectious diseases as well as transitioning transgender patients.

If you are a parent of a potentially exposed child, you need to read this article.

It reinforces what I have told you through a mother’s eyes.

Oh, yes, and PrEP can be cheap or FREE but you have to know how to get it. There is no mention of how to get it on the HHS and Georgia CAPU.S. websites but there are mentions on other state websites and on the manufacturer site. The state of Washington’s site is pretty good, for example. First, if you have medical insurance, PrEP may be free or at reduced cost to you. Because many people will be losing medical insurance soon, some will be unable to get it free this way. If you are uninsured and meet other requirements, you may be able to get it free from the manufacturer, Gilead. Get the application form. I recommend that if a person goes to see a doctor to get a prescription that they should have the doctor or their staff help you fill out the form. There is a Gilead help line 1-855-330-5479 but you may not be able to answer all their questions over the phone.

Worldwide, the availability of PrEP is spotty. Some countries like Norway give it away for free, while it is surprisingly not available in some usually progressive countries such as Australia. New Zealand makes it available for a dollar a month. There are HIV suppressing initiatives in some countries which are funded by private foundations or governments. The U.S. government PEPFAR program spends about a billion dollars a year to aid people in other countries including testing, counseling, and treatment but PrEP is not a part of it, that I can tell.

For the sake of improving the reputation of transgender people by reducing the frequency of HIV, when appropriate you ought to pass on your new PrEP knowledge to others, especially to doctors. At least you can say it exists and can be obtained FREE. Maybe you do not want to absorb or remember this information all at once. It is pretty scary stuff. At least you can remember that there was an article on TGForum about it and go back to it if you need it to save a life.

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Category: Body & Soul

About the Author ()

Dana Jennett Bevan holds a Ph.D. from Princeton University and a Bachelors degree from Dartmouth College both in experimental psychology. She is the author of The Transsexual Scientist which combines biology with autobiography as she came to learn about transgenderism throughout her life. Her second book The Psychobiology of Transsexualism and Transgenderism is a comprehensive analysis of TSTG research and was published in 2014 by Praeger under the pen name Thomas E. Bevan. Her third book Being Transgender was released by Praeger in November 2016. She can be reached at [email protected]

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