Invisible No More: In Their Own Words Part 2

“It’s been very difficult to find a doctor and healthcare team that’s supportive of my transition. I went through a lot of bad doctors before I started seeing one who was open to me and open to listening to me. I had to move back in with my parents. I’ve been purchasing HRT online since then, but it’s very expensive. I really want to go back to my medical team”.

~ Trans Fem & NonBinary, Androphilic, Latinx, 25y, Southern US

“I just realized now that you asked me this that for 6 to 9 months, I did not get tested at all, while I could not see my doctor. But I was never worried about it because my viral load had always been really low”.

~ Person Living With HIV (PLWH), Gay Black + Latinx Male, 56y, Western US

“I started online counseling after I took a depression assessment through work, but it wasn’t a great resource for me. I didn’t feel like they “got” me, they weren’t present in the way I needed them to be through the screen. I’m now looking for an in-person therapist I can go to, but it’s difficult to schedule and connect with a therapist who has availability for new patients in my area”.

~ Person Living With HIV (PLWH), Gay Male, 41y, Mid-Atlantic US

Once we got the mask mandate, I started my blood work again. I skipped during lockdown for 6 months, Luckily my numbers were in a good place”.

~ Person Living With HIV (PLWH), Gay Black Male, 36y, Southern US

“We provide Sano devices to them – a phone they can specifically use for medical or emergency services. So we got those out to our clients. It was a small program before COVID and we expanded with COVID so that they could still meet with their doctor”.

~ Community Based Organizer (CBO) Staff

“So definitely have a one-stop shop and have the medical provider on site. There are many aspects of getting somebody connected to care - we’re going into PrEP, we have a case manager or, PrEP nurse and pharmacy, you know, all those things will really just make it better”.

~ Person Living With HIV (PLWH), Gay Black Male, 36y, Southern US

“understand that people were dying, and they had to slow COVID down somehow, but the focus went to COVID research and took away focus on things like cancer, HIV, diabetes”.

~ Community Based Organizer (CBO) Staff

“I think that one thing I can say is that with all the advancement during COVID it has taken the focus off of taking PrEP for prevention”.

~ Person Living With HIV (PLWH), Gay Black Male, 36y, Southern US

“Initially I lost my job and they kept us on insurance a bit but then we had to pay, you would have to pay to keep the insurance going. It was very expensive and not enough with just unemployment. I only paid for a month and then it was too hard. A social worker helped with Ryan White funds to help pay some of the insurance. I don’t have that same level of support in 2022. There are some funds for trans care, my hormones are covered by some grants. My therapist went virtual, still saw my infectious disease doctor in person but never met my Psych in person, only virtual. I prefer in-person but one of my mental issues makes it hard to have interpersonal relationships. I need you to be trusting and want my psychiatrist to confirm with the rest of my medical team”.

~ Person Living With HIV (PLWH), Black Transgender Female, 28y, Midwest US

“For me I prefer to go to my doctor... it’s part of my routine, the people are nice. I can honestly say my HCPs are like my family  telehealth now is a backup”.

~ Person Living With HIV (PLWH), Gay Black Male, 32y, Western US

“If they didn’t go to work, they lost their jobs, but their jobs exposed them to COVID and because of the health disparities that you have with this population you had more deaths”.

~ Community Based Organizer (CBO) Staff

"The negative has just been the unknown...we didn't know anything about it it kind of felt like we were being guinea pigs...I snapped into survival mode...I would do anything to stay alive I don't have the leisure of not trusting a vaccine it has to work for me".

~ Person Living With HIV (PLWH), Gay Black Male, 36y, Southern US