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How Did We Get Here? Reflections on HIV Long-Term Survivors Day

Joseph (Joe) Interrante, a long-term HIV survivor, is Chief Executive Officer of Nashville CARES. He made AIDS his life work after his first life partner’s illness and death from AIDS in Boston in 1983. We caught up with Joe to discuss the importance of HIV Long-Term Survivors Day and learn about his work.

Can you tell me a bit about yourself and how you got involved in this work?

As with many people in AIDS work, my original connections were personal. In 1983, my life partner of six years was one of the first people diagnosed with AIDS in Boston. At the time, I was finishing up my graduate work in history, teaching college, and had been involved for several years in community LGBT and progressive politics. After his diagnosis, my partner started volunteering with the group that eventually became the AIDS Action Committee of Massachusetts. He decided to be public about his diagnosis and we took on the role of doing media work around AIDS. I laughingly referred to us as the "poster children for AIDS" in Boston at that time, but on a serious note, it helped cut down on the isolation that surrounded the disease at that point. He died six after his months of diagnosis, which was not unusual for people at that point. I continued to be involved in the work.

I found out in 1985 that I was HIV positive. (Well, "HTLV-3 positive" but we didn't use that term.) It certainly reinforced my interest in the work and played a role in my decision to switch careers and make AIDS work my life work. I moved to Ohio in 1986 to teach, where I continued to volunteer and eventually became the executive director of the agency that came to be known as the AIDS Taskforce of Greater Cleveland.

In 1994, I moved to Nashville CARES. I’m not sure I ever expected that 23 years later I would be in this role and beginning to discuss retirement and succession with my board so we can make way for a new generation of leadership.

What does it mean to you to be a long-term survivor?

When I was diagnosed in 1985, there were no treatments and there weren't even many tools to monitor what we now call HIV progression except (I think) measuring some one's CD4 count. At that point all we had were treatments for the various illnesses you could get as a result of infection, and those were not consistently successful. So, I didn’t honestly expect to live beyond the age of 50, which was not an atypical attitude. I didn't obsess about that, but I do this it contributed to the life choices I made, like deciding to devote myself to AIDS work.

Ten years later here was a dramatic shift when suddenly with combination therapies people began to live longer. At the time, we called it the Lazarus effect, because so many men and women who had been planning for their deaths suddenly had to start thinking about and planning for living. AIDS organizations also went through a comparable change in their work. What it meant, for example, to "improve quality of like" for people living with HIV took on a whole new meaning.

At this point in my life, I am grappling with issues that probably are more related to aging than HIV – although HIV complicates things. I laughingly say that I’m spending more time with my rheumatologist and urologist than with my HIV doc. That’s the nature of long-term survival. It still amazes me that I’m one of those folks who has been lucky enough to live this long with this disease; additionally, for whatever reasons, I’ve never actually had an HIV-related illness. I will say that I think that this work has contributed to my healthiness and longevity. It provided me a way of engaging meaningful with this disease and doing something about it that was personal as well as programmatic and political.

Why is HIV Long-Term Survivors Day important? What are the unique needs of long-term survivors?

It’s important because it draws attention to the fact that a growing portion of people living with HIV and AIDS are older. It brings visibility to the issue and the fact of long-term survival, which is something that we haven’t paid much attention to. Given that lack of focus, I think that long-term survival in itself can contribute to a certain degree of isolation for us, so this sort of recognition and acknowledgement is important.

From a service perspective, we are now grappling with the issue of what does it mean to provide senior care to people living with HIV, especially because the model that we have in this country for geriatric or senior care doesn’t fit for many people living with HIV. Senior services are based on people having a private familial network of support close to them. For many older people living with HIV, their support network is primarily other people with HIV, particularly for gay men living with HIV, many of whom uprooted themselves from their places of origin and moved to larger cities to pursue what it meant to be gay.

How AIDS organizations both provide services and nurture a community for people who are long-term survivors is on the cutting edge right now. (Many aging baby boomers are also single adults or couples without children who lack the same kind of familial support network.) We are only beginning to address the needs of long-term survivors. Who would have thought that the buddy program would be needed again specifically as a strategy that responds to and supports long-term survival, but that’s what GMHC did by reviving its program. I know folks my age who play multiple roles in the community who would benefit from a program like that. As a widow (my second life partner of 25 years died in 2012), I expect I would benefit from it in the not too distant future.

How can we build community across generations and with people more recently diagnosed with HIV or younger service providers?

I am acutely conscious that people of my generation who are living with or affected by HIV and AIDS are conservators of the early history of AIDS. We need to figure out ways not only of preserving it, but passing on that legacy to a new generation of leaders. That’s part of the nurturing of the new generation of leaders in this fight. Without devaluing any of the progress that has been made, we have to share our history to make sure it’s not forgotten. And not in a way which "lords" it over people – not "you have no idea how hard it was in the early days." That’s not the point.

For example, a few years ago, I realized that a very large number of CARES staff were in there 20s and were born after the early years of the epidemic. So I put together a talk for staff on the early history of AIDS in the 80s, based on my own personal and larger recollection. Today we live and work in an era of "early diagnosis and care" for people infected with HIV but otherwise healthy--at least that's the goal. But in those early years (really through the 80s), the way someone found out he or she had AIDS was they got sick. Those were who an organization like CARES served. And in the absence of a cure and very limited treatment options and pervasive stigma, often the core of what we did was to let people know that they were loved and not alone, and to provide the support for a death with dignity. I don't think the importance of that can be overestimated. And it's still an important part of our culture, along with all our progress in preventing and treating HIV.

There are so many long-term survivors who are active in this work, we are all engaged in that process of trying to cultivate and nurture a new generation of leaders. But is important for us "veterans" to be in a dialogue with that generation as opposed to a monologue.

How does Nashville CARES incorporate the principals of meaningful involvement of people with HIV/AIDS (MIPA) into your day to day work?

CARES, like many other organizations, has always had a philosophical commitment to having people living with HIV actively engaged as providers as well as consumers. They are staff, volunteers, clients, and some folks are in multiple roles. We do that because blurring that line between "provider" and "consumer" makes services better.

A few years ago, we started working intensively on issues of care engagement and treatment adherence, and designed a program that was peer-based, peer-managed, and peer-delivered. That program demonstrated that what I call an experiential understanding of living with HIV was a skillset that was just as important to good services as understanding how Medicaid works or what housing resources are available locally.

When we realized this, we moved from a philosophic understanding of MIPA to a strategic understanding of MIPA and how it helped us do our work and achieve desired outcomes. For example, we created a range of peer roles within our service delivery environment and made peers part of all our services teams. Obviously, people living with HIV are not restricted to those roles (I'm an example of that). But today 25-30% of our staff are people living with HIV, many of whom are also clients.

Learn more about MIPA in this new AIDS United resource!

How do you stay motivated in your work?

You celebrate the achievements where you find them. That’s tied up personally for me. I just observed my 23rd anniversary at CARES. I’m proud that the agency has constantly reinvented itself over time in response to the changes or progress in both our knowledge about and the tools we have to deal with HIV. I have a great staff who are very talented and committed. We’ve never been happy to continue with things as they are. There are constantly new challenges to be faced. That keeps me motivated.

I am often struck by the thought, oh my god how did I end up here? I am now talking with community leaders to develop a plan to end the epidemic in Nashville. Ten years ago, who knew that we’d all be dealing with this in realistic possible terms? Who would have known that I would come this far and be in this position?

I’ll end on that advocacy note: we’re in an amazing period to be doing this work, so long as the policy makers don’t mess it up. Advocacy is more important now than perhaps it’s been in the last decade. We’re at a point where the losses will be so great if we move backward.

CDC Campaign banner of Eddie, a person living with HIV since 1987: HIV, you won't stand between me and a long, healthy life, says Eddie of Miami, Florida. HIV Treatment Works. Get in Care. Stay in Care. Live Well. Hear his story at A photo shows Eddie doing a stretching exercise in a park

Posted By: Sarah Hashmall, Communications Manager - Monday, June 05, 2017

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