Malcolm Reid is an advocate supporting Health Equity with a focus on marginalized communities and people living with or vulnerable to HIV. Reid is the Founder and CEO of Unity Arc Advocacy Group. Prior to founding Unity Arc Advocacy Group, Reid was the Director of Policy and Advocacy at THRIVE SS, a non-profit organization dedicated to providing support for Black queer men in Metropolitan Atlanta. During his tenure at THRIVE SS, Reid founded the Silver Lining Project, which maintains a safe space for Mature African American men living with HIV can partake in discussion and advocacy for issues that impact their community.
Q: You’ve spent a lot of your career in HIV/AIDS advocacy. What inspired you to become an advocate, and how have you seen the HIV advocacy field shift over time?
I spent over 40 years of my career in IT. In 1997, I was diagnosed with HIV, which is kind of how I shifted my career to this field. As a person living with HIV who had a good job and good insurance, I was blessed – I came from this privilege, in a way, because I had good insurance and a solid relationship. My husband also lives with HIV, so we navigated those HIV care waters together. I always had somebody to talk to and rely on, as well as good access to care. I didn’t know about all the problems that people who were living with HIV had in accessing their medicine.
Back in 2013, I started talking to people about things like barriers to accessing care, and I was appalled at what people were going through. Friends of mine had to recertify every six months through the AIDS Drug Assistance Program (ADAP) just to receive their medications, and I couldn’t wrap my head around people having to recertify because they have a disease that there is no cure for. I remember, one time a friend told me, ‘It’s not a matter of whether or not you still have the virus – it’s a matter of whether or not you can afford your care.’ And I thought that was crazy because you’d have to be about 400% above the poverty level to be able to afford HIV medication without any other supplemental insurance. Both insurance recertification and costs are huge barriers to HIV care. So, I decided that I needed to do something about this, as a person who was coming from a more privileged situation. As I started this journey, I noticed that no one looked like me – no one looked my age. I went to several places and saw groups for young guys. So, I put it out there that I was looking to get involved. A friend of mine invited me to a meeting, which was the beginning of THRIVE. I mentioned that I wanted to see a group for people my age and was told to start it. I started doing some things, and it’s always a belief of mine that if you have something in your heart that is true and good, the universe will send you who you need. So, me and a group of men all came together and collaborated on writing a grant for the Silver Lining Project.
I’ve always been politically aware – not to the policy wonk level that I am now, but to an extent. I didn’t just want to do what the Silver Lining Project was doing, which was talking about stigma and ageism and trying to alleviate those symptoms, but I also wanted to get involved in policy and find out what I could do to make things better, especially in the South. In terms of the way that the HIV advocacy field has shifted over time, there’s been a lot of biomedical progress. We’ve come a long way since I was diagnosed in 1997 when ART came out. Where we haven’t come a long way is dealing with quality-of-life issues – with stigma, housing, and other things that are merely a byproduct of living with HIV.
Q: In May 2024, you founded Unity Arc Advocacy Group, which places emphasis on health equity. Can you tell us a bit more about the founding of Unity Arc, along with the core goals that you have for the group?
I had been working full-time at THRIVE since 2018 and was really excited about the work I was doing there. But eventually, I figured that I could do the work that I’m doing for THRIVE while simultaneously expanding. I love my Black, same gender loving community, but I also know that there are disparities and health equity impacts among other marginalized communities. I wanted to remove those boundaries and create an advocacy organization that fights for health equity. HIV certainly remains a priority for me, but there is much more work to do. One day I sat down and decided to create a vision for Unity Arc – a world where health equity is not a distant dream, but a shared reality. I often talk about equity being like a tapestry woven with compassion, resilience, and unity.
Unity Arc Advocacy Group will be a network of health equity champions, and we want to honor ancestral wisdom, empower communities, train new advocates, and collaborate with policymakers to create a world where health disparities are eliminated. In Ghana, there’s a term called Sankofa. It’s a bird that is looking back while flying forwards. It’s always about moving forward but making sure you retrieve the old wisdom. I want to empower communities to be the architects of their own health and collaborate on policy – while emphasizing working closely with policymakers and providers to break down disparities and health equity barriers. Continuously working with changemakers, healers, activists, and advocates to make sure that the world we want is the world we get – that’s what Unity Arc Advocacy Group is all about.
Q: In 2022, approximately 54% of people living with HIV in the U.S. were 50 years or older, and people 50 years or older accounted for 16% of new HIV diagnoses. As the founder of the Silver Lining Project, can you speak to which factors you think contribute to these numbers, and how can stakeholders support people over 50 who are living with HIV?
I wanted to create something with the Silver Lining Project that dealt with the stigma of living with HIV. The statistic that 54% of people living with HIV in the U.S. were 50 years or older likely comes from biomedical successes. We’re living longer – and a lot of the men who joined the Silver Lining Project didn’t think that we would still be here. A lot of people spent their money, and cashed in on life insurance, because they didn’t think they would be around much longer. It turns out that we are still here. The issue is that biomedical interventions don’t deal with the stigma and other social determinants around living long-term with HIV. With the Silver Lining Project, we want to be there for the 54% — for the growing number of people living long-term with HIV.
As far as people 50 years or older accounting for 16% of new HIV diagnoses – people seem to think that after 50 years of age, people stop living, stop having sex, and stop doing all of these other things that can contribute to HIV acquisition, especially if you are not aware. There are tons of same gender loving men who have lived all their lives in heteronormative, straight relationships and then realize who they are, and end up on the dating scene as same gender loving men. Women are also acquiring HIV later in life because they’ve also found themselves out on the dating scene. There are so many ways that acquisition perpetuates throughout society. When you look at new diagnoses for individuals 55 and older, Black individuals 55 and older have the highest rate of new HIV diagnoses compared to other races/ethnicities in the same age group. As a Black man, I’m really focused on that. The new diagnoses are essentially due to a lack of testing at the level that we should be for people older than 50. People older than 50 are more comfortable thinking that they’ve escaped the ‘curse of HIV,’ if you will. There aren’t many advertisements with people with gray hair saying ‘hey, you need to get tested.’
There’s also a public policy issue with HIV criminalization. People who are on the dating scene may not know that they’re living with HIV. Or they may know but won’t say anything because of stigma. Either way, people are afraid to get tested because they’ve been living their lives. If they get tested, they could be criminalized.
We have to work with the stigma, we have to work with public policy, and we have to work with CDC testing guidelines. CDC testing guidelines tell doctors to test for HIV between the ages of 13 and 64. I’m working with someone at SAGE to try to get the CDC to eliminate the upper limit because at 64, we don’t stop having sex. We should be testing everybody. It should be a normal part of somebody’s medical care to get tested for HIV. Years ago, I had a friend tell me that she had tried to get HIV tested in the 80’s, and the doctor told her she didn’t need it because she’s a woman. These types of barriers still exist – people are told they don’t need an HIV test because they don’t fit the ‘criteria.’ We need to break down those walls and make sure we are testing people.
Q: 25% of all people living with HIV/AIDS are classified as long-term survivors, meaning many of these individuals acquired HIV before 1996. What role do long-term survivors play in the current HIV epidemic?
We play a huge role in dealing with the epidemic, especially when it comes to dealing with quality of life. Long-term survivors have to be visible. We have to be out there showing everyone that we’re here, we’re healthy, we’re taking care of ourselves and living our lives. It’s crucial for that newly diagnosed 22-year-old walking out of the doctor’s office to know that this won’t kill them. They need to have people in their 60s or 70s to point to those who have been living with HIV for a long time so that they can know that as long as they take care of themselves, they will be okay. That’s extremely important. We have to make sure we’re out there showing people that they can thrive with HIV, as long as they make sure that they have adequate access to care. We just want to make sure that people don’t fall back into stigma symptoms, that people don’t think that they’re going to die or be alone. And the best way to do that is to live, and get out and talk to a long-term survivor, or get into a support group. Whatever you need to do to thrive and live abundantly.
Q: September 18 is National HIV/AIDS and Aging Awareness Day (NHAAAD). What is one message you would like to communicate to aging individuals living with HIV/AIDS, and to the communities that support them?
My message to those aging with HIV on HIV/AIDS and Aging Awareness Day is to continue to live, continue to fight, continue to love, educate, advocate, motivate, do all of those things. Be a beacon. Be somebody that the community can point to and say he’s living with HIV, she’s living with HIV, they are living with HIV, but they haven’t been stopped. They’re still doing what they’re doing. National HIV/AIDs and Aging Awareness Day is special to me because my birthday is the day before – and I’ll be 67 years old. It’s also my husband and I’s 27th anniversary. We pride ourselves on being a visible couple. We’re on social media when we’re out and about. We take pictures, we post them, and we don’t shy away from posting things about our health or our HIV health. We always try to make sure that we put a positive spin on it. My husband is recovering from cancer, and we used our platforms to let people know that he’s doing well and going to survive – that people should listen to their doctors, continue to live, and continue to thrive. We just continue to live because, like I said, somewhere somebody just walked out of a doctor’s office with a new HIV diagnosis and they need to see you out there, living your life and being happy.
