Today over a million people in the U.S. live with HIV. The number of new infections continues to decline; however, annual infections and diagnoses have increased among some groups. So, testing is still critically important.
Here to talk to us are Zpora Perry, a social worker with the Infectious Disease Clinic and the HIV Care Clinic at the UVM Medical Center and Jay, a Vermonter living with HIV.
What is the state of HIV in Vermont?
Zpora Perry: At best estimate, we have about 600 people who are in care for HIV in Vermont. That means there are about 460 here in Burlington and then we have three satellite clinics around the state in Rutland, Saint Johnsbury, and Brattleboro. Additionally, some people get care at Dartmouth-Hitchcock and a handful of private practices.
In Vermont, about sixty percent of the people living with HIV are men who have sex with men. We use the term men who have sex with men instead of gay, because some people don’t identify as gay. They just identify as a man who has sex with another man sometimes.
The great news about living in Vermont is that there is really good care. At last count about ninety-five percent of those people in care were what’s called virally suppressed. That means on a blood test there was no evidence of the HIV virus in their blood.
You mentioned some at risk groups but is really anybody at risk?
Zpora Perry: No one is immune to getting HIV. It’s spread through sexual contact and through sharing needles. It used to be spread through blood transfusions, but now the blood supply is tested and you can’t get it that way.
The good news is, even just in the last four or five years, there are more and more things to keep people from getting infected. One of those is PrEP, which stands for Pre-Exposure Prophylaxis, and that’s one pill that you have to take every day. It’s ninety percent effective in protecting you from getting infected with HIV.
Jay, what were your thoughts and feelings when you were diagnosed?
Jay: At some point in the mid-1990s, I stopped being completely religious about using condoms. I ended up seroconverting as a result of that. Seroconverting means testing positive for HIV when all the HIV tests that I had taken before showed that I was negative, that I didn’t have the virus or antibodies to the virus. Then, this test showed that I had antibodies.
Back then, there was a home test that you could buy. I did the home test and it was positive and so I called the clinic. I knew some of the people who worked there because I had done a lot of HIV prevention work with them.
That was actually what made it harder, too. There was a little bit of an identity issue for me because I had done all this prevention work; I knew how HIV was spread. There was some shame in admitting that I had seroconverted.
How are you feeling today?
Jay: I feel fine, I’m good. I’m in good health. It’s been really great to read or hear about some of the studies that show that my life expectancy is the same as somebody who doesn’t have HIV. And you know that’s certainly not where it was twenty years ago necessarily. Now, I have heart disease; that’s something I have to worry about. Twenty years ago it wasn’t.
You were diagnosed right as new medicines were coming out?
Jay: Yeah. In the mid-1990s, a new class of drugs called protease inhibitors came out. It changed things for the better on the treatment side. A lot of people who were getting sicker were put on these medications, and they got better.
I only switched to this new one-pill-a-day regimen in the last year. I was used to taking six pills a day: three pills in the morning, and three pills in the evening. Taking one pill a day is a big change.
What do the latest studies say?
Zpora Perry: There are more and more studies showing that when you are virally suppressed, the possibility of spreading HIV is very low.
I think that’s really important for me to be able to tell people. People who are newly diagnosed come in and think that no one will want to be friends with them again, let alone have sex with them. To be able to say to someone, you know what, it’s a rollercoaster at first, but then there’s nothing that you can’t do. Especially if you’re just taking one pill, once a day. You don’t have to duck out of a party to take your three pills, or make sure that you’re eating your calories to take your pills. It just makes it a chronic health condition and that’s really what it is.
Jay: I mentioned before that I’m in my mid-fifties. I got diagnosed with coronary artery disease about a year ago. I take more medication for that than I take for HIV.
Have you dealt with any other challenges since you were diagnosed?
Jay: I worry about my health insurance coverage. That’s really important because prescription coverage is important.
There definitely was a lot of stigma around being HIV-positive. People felt you were contagious, you weren’t really sure how contagious you were, and uninformed people were worried about nonsexual routes. But, that’s completely changed now. With the advent of PrEP people are able to do something proactive to protect themselves, to prevent themselves from getting HIV that doesn’t involve condoms. My partner is HIV-negative and although I’m virally suppressed, PrEP is sort of like an extra safety net.
Are there any misconceptions people have when it comes to HIV and living with HIV?
Zpora Perry: Even though we have come a long way, I do think people are still sometimes surprised to hear that life expectancy is the same, and that if you can take your one pill per day, life isn’t going to look that much different for you.
Jay: I think there are people who are still afraid that if they find out that they’re HIV positive, that their life will end somehow. It’s certainly not the big deal it used to be. I believe everybody has access to treatment and medication. It’s not a situation where “Oh, I don’t have insurance, there’s no way I can afford the treatments.” There are all sorts of programs to help people.
And you help people navigate that at the HIV Care Clinic?
Zpora Perry: I do. I feel lucky to be doing this work in Vermont, because I can say to people that we can get you your medicine one way or another and I feel confident in that. For most people, it’s at no cost if that’s what they need. You can get your medication affordably.
Jay mentioned, he worries about insurance coverage. People worry about losing their jobs and with that their insurance coverage. They worry about turning sixty-five and what does it look like once you have Medicare, those kinds of things. At this point, programs are in place to get people their medicine and to get people the blood work that they need. People generally need to get blood drawn twice a year and that’s expensive. Again, we have programs to help with that.
What should people know about testing for HIV?
Zpora Perry: The best place to get tested is at your primary care provider’s office. There are also many places in the community that will do a rapid test if you are not able to get tested with a medical provider. You should get screening tests regularly if there’s a risk that you’re worried about. When I say risk, I mean if you have had sex with someone and you don’t know their status, or you didn’t use a condom. Also, if you’re injecting drugs and sharing needles, it’s important to get tested regularly.
The best place to get a blood draw is at your doctor’s office, because the testing now is what’s called fourth generation and that means that it will detect the virus more quickly. It’s a more reliable test. But, any test is better than not getting tested at all!
Are people still afraid to get tested?
Zpora Perry: I do think that people still are afraid to get tested because they don’t want to know. They’re afraid their life will change. There is also some discomfort about talking to a doctor. If you go to your doctor every year, your doctor doesn’t usually ask you who you’re having sex with and how many people you are having sex with. Most of us don’t want to bring it up if the doctor doesn’t bring it up. So, for some people it’s uncomfortable still to get tested at their doctor’s office.
Our clinic does offer free, confidential testing that doesn’t go though your insurance or your medical record and a lot of the community agencies do the same.
Jay: I have friends who avoided getting tested and only found out they were positive when they got really sick. There was a friend of mine who found out two years ago. This is after all the good medications came out. From my perspective, there’s no reason not to get tested. He’s basically blind as a result of having waited so long to find out he was HIV positive. He got an infection that’s called CMV retinitis that affects your eye sight. It could have been prevented.
What is the benefit of early diagnosis?
Zpora Perry: When someone comes in with HIV, we measure their CD4 cells, which are part of your immune system. Even if they have only four CD4 cells – meaning they don’t have any immune system – once they’re started on medicine, they will get healthy again. But, the outcomes are less good when you wait: your life expectancy might be a bit shorter and you may have other complications to address as well.
It is different for everyone, but you can have HIV for a really long time and be completely healthy and not have any idea that you are infected. But, if you go for a long time and you don’t get tested, then you’re leaving yourself open to what’s called opportunistic infections. These are infections that people with a functioning immune system wouldn’t get. But, people who have a compromised immune system can get them and some of the symptoms can be lasting. The other issue is that if you don’t know you have HIV, you could inadvertently be infecting other people.
So, the first step is to find out where you stand?
Zpora Perry: Yes. The recommendation is that everyone get tested. It doesn’t matter what gender you are or who your sexual partners are: get a baseline test and get tested annually after that, or more often if you are concerned about an exposure.
To learn more about the Infectious Disease Clinic and the HIV Care Clinic at UVM Medical Center, please visit UVMHealth.org/medcenter.