‘It Should Be Like Taking Your Temperature’: Getting Tested for HIV Is Self-Care

 In: Announcements

Photo courtesy of Jeff Weinstein

A Q&A about HIV testing with LGBTQ+ elder Jeff Weinstein

Since 1995, National HIV Testing Day (NHTD) is recognized annually on June 27. According to hiv.gov, the purpose of NHTD is to raise awareness about HIV and encourage people to get tested. In this spirit, SAGE sat down with journalist, LGBTQ+ elder, and activist Jeff Weinstein to discuss his experiences with HIV testing. Read on to learn about what it is like getting tested for HIV and how to take charge of your own sexual health!

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SAGE: Hi, Jeff. Could you start by introducing yourself to our readers?

Jeff Weinstein: I am Jeff Weinstein. I am a lifelong writer, editor, and journalist. I am 76 years old, and I live in New York City and Bellport, Long Island. I am married to a writer, Daniel. Often, we both find ourselves writing in the same room at the same time.

I’m here because one of the last pieces I wrote was for a magazine called The Baffler. I have been involved most of my life with LGBTQ+ liberation. I came out the year after Stonewall, in 1970, when I was in graduate school. I have been beating that drum ever since.

SAGE: What a time to come out. Thank you for sharing. Let us dive into our topic for today. I would love to learn about your experience with getting tested for HIV and how that feels now as someone in their 70s.

JW: Right. I was trying to think about the first time I was tested. I cannot remember what the first time was, but I wish I could. I do know that when testing began, people were extremely nervous about being tested. I do remember going with at least one or two people I knew when they had to be tested to hold their hand.

My present healthcare provider put me on PrEP. He said it was a necessary thing if I was going to be hooking up with people, which I do. I am in an open relationship. But to get PrEP of any kind, you are required to test for HIV every three months. Medicare will pay for testing only once a year. You cannot do what you are asked to do around HIV testing every three months to get the drug [PrEP] to remain free of HIV if your insurance will not pay for it.

I need workarounds for testing. I have to find a way. My healthcare provider and I work together to figure it out. Some of that workaround for HIV testing is in the piece that I wrote for The Baffler.

Healthcare providers will tell a senior, “No, you don’t need to be tested for HIV.” But you must be active with your healthcare. It is difficult. People are very shy about talking about their sexuality, young and old. Sometimes they do not trust their healthcare provider. And there is a reason not to occasionally.



SAGE: We’ve gotten into your motivation for getting tested during this stage in your life and why others should get tested. Now, let us dive into this year’s theme: “Level up your self-love: check your status.” How does this resonate with you personally? Do you see getting tested as an act of self-love?

JW: We should love our bodies and understand that our bodies are worth caring for and deserve to be cared for. We should not have to go through hoops to get the care that we deserve. I think that working with others and fighting for medical care is a form of love — not only for oneself, but for other people. That is where I would take that.

People should not be shy with healthcare providers. It is not easy to help people with this. But sometimes people need somebody to walk them in and help them write down a list of the kinds of questions that they want to ask.

I have had a lot of bad experiences with healthcare providers all through my life. I will say it again, I am 76. I was a type one diabetic at age eight. I came out, and I had STIs when I was in school. I thought it was important to tell healthcare providers that I was having sex with guys, and that I was queer. Sometimes they did not listen to me. I remember one person during the age of AIDS in the late ’80s and early ’90s who never spoke to me about whether I was using protection or not.

I think I might have even written this; some healthcare providers are not going to be always particularly good about this. I think you must then either be pushy about this if you can be or find a queer-positive healthcare provider. SAGE can help with that, and so can other organizations. That is what I would do. It is important that we get the care we deserve. And that is very much involved with using the help that we can ask for. I love my healthcare providers now. I trust them. And I am happy to talk to other people to show that it is possible to do this. I know it is not easy for everybody, but it is possible.


Photo courtesy of cdc.gov


SAGE: Yes, you are serving as a great example. To embrace taking care of your body and to take care of your health and advocate for yourself. You know yourself best and what you need. What advice would you give someone who is apprehensive? You mentioned reaching out to a friend, but what are some other ways people could act on this and get help?

JW: Well, I mean, one of the things that I had to do — because I am afraid of forgetting things — is write things down. When I had something in my hand, in a way, it was like getting back to myself. If you are nervous, it is very good to talk to somebody. Even if that person cannot go with you to your appointment. There is no reason that you cannot admit you are nervous. A good healthcare provider will say, “There’s no reason to be,” or “Would you tell me why?” They are here to help. There are a lot of reasons people are nervous, too. Sometimes people do not want to talk about what they do in private or about what they are not sure about.

All sorts of STIs can be frightening to people when they do not know about them. And they also do not know that there’s treatment for so much now that there was not before, including effective treatment for HIV.

SAGE: Thank you, Jeff. How has your experience with HIV testing and HIV stigma influenced your outlook on aging?

JW: On aging? That is a very good question. My outlook on aging has changed dramatically for several different reasons. COVID is one of the reasons — losing so many people. The fear of infection with COVID just immediately reminded me of the fear of acquiring HIV. When it felt like a death sentence. I do not like using those terms because it is so not that now if you have access to HIV treatment.

You do not want to be afraid of mortality because it is going to be there. I am writing a piece right now about grief. Grief takes many forms as you get older, and the nature of grief for me has changed as I have gotten older. There are so many reasons for, and ways of, grieving. One of them is being angry — because people’s lives could have been saved. That is where HIV comes in. My grief now is fury. My wonderful lovers and friends died and need not have done so because care was postponed for them. I am sure you know the story. The drugs that could have saved lives were held back and were not used or misused by so many people.


Photo courtesy of cdc.gov


SAGE: Thank you for sharing, Jeff. Is there anything else that you want to add? Or anything that you want to tell people who are considering getting tested for HIV and are getting older?

JW: The thing I really want to say about getting tested is please do not be afraid of being tested for HIV. It is extremely important. People do not ask questions a lot of their partners or the people with whom they are having sex. Also, I have read and spoken to people who did not realize that they were vulnerable to HIV. People can have HIV and pass it along, and not know they are doing so if they are not tested. It should be like anything else. It should be like taking your temperature. You know, frankly, it is a test. You will get an answer: It will be negative, or it will be positive.

If the test result is positive [a result indicating that the person has HIV], there are certain things you can do, and it is good to know. [For example, get connected to an HIV medical provider to get HIV medications. When a person with HIV is on HIV medication and has an undetectable viral load, it means they cannot transmit HIV to another person sexually. Learn more about how HIV is transmitted.] If a doctor says you do not have to be tested for HIV, you say, “Yes, I do” or find another healthcare provider!


This interview was edited for clarity and length.