'We Still Need a Cure': Maitri's Executive Director on the Changing Face of HIV/AIDS and Lessons From the '80s

It’s been 40 years since the first AIDS cases were reported by the federal government. The decades have brought pain, death and community trauma, but also life-saving medical breakthroughs, perseverance and hope.

That journey was honored at Golden Gate Park at the National AIDS Memorial Grove on June 5, as Dr. Anthony Fauci, House Speaker Nancy Pelosi and AIDS activists recalled another pandemic, another struggle, in another time.

Rev. Fr. Rusty Smith, executive director of Maitri Compassionate Care spoke to KQED about his work in hospice. Maitri, located in San Francisco’s Duboce Triangle neighborhood, provides hospice care for low-income and homeless people living with AIDS, as well as people who need 24-hour respite care or recovery support after gender affirmation surgery.

Smith has been doing this work for over three decades. In the early 1980s during the AIDS crisis, he served as a Catholic seminarian and then became a priest. At the same time, he was the case manager and hospice caregiver at several hospices where people were dying from AIDS. As he sat beside those dying alone, he promised to never forget them.

In the following interview, Smith reflects on his past experience and shares how things have changed over the years.

The following has been edited for length and clarity.

You were working 40 years ago when AIDS was first discovered. What was that like?

Everyone died. I was a young person, and everyone I worked with, they were people like me. They were people that were in their 20s. And I saw them die within six months. No one I worked with during that time period survived AIDS. Everyone died.

Back in that time, in the early ’80s, everyone was afraid to touch and be close and hold people who had AIDS. And there were no or few religious leaders or clergy that allowed themselves to be present for people as they died, so many people died completely by themselves because of the shame involved. And even when I would go and do hospital visitation, we would have to completely gown up.

The promises I made were to people who had nobody left. And all of us that were activists, we all said to each other — and to the people that we loved and cared for — that we will never forget you, that we will say the story of your passing. And we made promises to them that we would not stop until there was a cure and until the stigma was gone. And that’s what that entire world was like. There were often weeks and months where I would go to four or five funerals, of men that were young — it wasn’t their time to die.

How have things changed over the years?

The face of AIDS has just completely changed. In the early ’80s, everyone within my community — the gay and queer community — primarily gay Caucasian men were dying. Now, it is a vast diversity of all different colors of people, and very strong components of that is poverty and a lack of stable housing, and access to care and services.

The other large part of this population that has changed is our transgender women of color community. They are being dramatically impacted by HIV and AIDS, and we are seeing that reoccurrence explode when at the very same time in other communities HIV/AIDS is being reduced. But within these communities it’s growing and it’s becoming more difficult to deal with.

Can you elaborate on why it’s becoming more difficult to deal with?

I am a white, privileged gay man. It’s not hard for me to go to the doctor and get my needs met. [But] in the early ’80s, it was horrible for me to go to the doctor. It was horrible for me to have to ask for the services I needed because doctors then judged me and shamed me about being openly gay and having gay sex.

Today, people who self-identify as being transgender are experiencing those same kinds of oppressive characteristics of medical care, health care, access to care and services, and additionally, access to safe and clean and affordable housing.

For many of us who have been through this journey a long time, are things better for people living with HIV/AIDS? Yes, they are. Can you have better access to better medications? Yes, you can. But for those that live on the margins, the same stigmas and obstacles exist that existed actually in the early ’80s. It’s just a different population group.

A 2019 report by the San Francisco Department of Public Health found that the HIV/AIDS population is also getting older. Specifically, it states that as of Dec. 31, 2019, 69% of persons living with HIV were aged 50 years and older. What are your thoughts on this aging population?

I know this may feel like a mixed celebration, but that is the most amazing news you could imagine — the fact that we as a population are aging, and HIV and AIDS has not killed us.

But there’s also that scary news of how do we take care of people when we’ve spent so many years just trying to preserve life? Now that we see an aging population, we have to, I think, reconstruct ourselves into what is long-term care.

What are some lessons we learned from 40 years ago that we can use today for those living with HIV/AIDS?

We’re good at [giving care]. We actually know how to do this. The people who come to Maitri, they don’t receive fair care, they receive remarkable care.

In the early 1980s, my clients would go to a clinic that was dirty, that often had people working there that disliked and hated them and that treated them badly. Right now, people who come for care and services here find extraordinary care, best practice care, staff that are highly trained and that are kind and gentle.

The lessons we learned when people are in those circumstances is they don’t need our judgment. They actually don’t even need our wisdom about how they got there and what happened to them. What they actually need is care and partnership.

You’ve been doing this for over 30 years. What keeps you going?

One of our residents was getting ready to be discharged into housing, who came here amazingly sick and was resistant to being loved, but we would not allow him not to be.

That’s what keeps me here — every staff member here. We do this for the people who are living and struggling with that disease.

For those living with long-term COVID, any lessons that can be taken from people living with long-term HIV/AIDS?

I think the instruction here is follow the science, do what the doctors tell you to do, ask questions, do advocacy, but recognize that you’re not by yourself. That actually is what all of us in the ’80s discovered.

Being by yourself and dying and struggling with the disease is horrific. COVID-19, I personally feel, has allowed us and invited us to be closer together. And I think that’s the lesson of this disease.

Any final thoughts?

There is a belief that HIV/AIDS has actually gone away. So much work within the service provider HIV/AIDS community is about prevention and helping people function at the highest level of autonomy possible, even if they do have AIDS. But the promise we made in the early ’80s that still hasn’t happened: We promised that we will work until we found a cure, and we still do not have a cure. We found a vaccine for COVID in a year. [For HIV/AIDs] it’s been 40 years. We still need a cure.