December 1 is World AIDS Day. Since it was first observed in 1988, the day has been an opportunity to spotlight the efforts to prevent, treat, and someday cure HIV, and to remember those lost to AIDS-related illnesses.
This year, Mount Sinai employees who have been on the front lines in HIV/AIDS treatment and research for decades—including those at the Institute for Advanced Medicine, which has been a leader since the 1980s—were asked to share what this day means to them. Here is what they wrote.
Judith A. Aberg, MD
Judith A. Aberg, MD, Dean of System Operations for Clinical Sciences, Chief of the Division of Infectious Diseases, Dr. George Baehr Professor of Clinical Medicine
My first engagement with HIV/AIDS was in 1981 as a microbiologist working in Richmond, Virginia, as reports of pneumocystis pneumonia and cryptosporidium were increasing among gay men. Given my background in microbiology, I entered medical school with the intent to become an infectious diseases physician. My rotations during medical school continued to drive my interest in HIV for several reasons. One, the patients were my peers by age, and the devastation of seeing them suffer in the absence of effective therapies was heartbreaking. Two, there was so much misinformation, fear, and stigma associated with HIV that compelled me to gain knowledge to combat social injustice and inequities in health care. Third, persons with AIDS had infections that I had a strong scientific interest in and would eventually lead me from initial plans of having a lab to conducting clinical trials in search of more effective therapies.
World AIDS Day to me is a way for us to say “we will never forget” and to continue our fight against AIDS. There remains too much morbidity, mortality, and stigma among persons with HIV. I keep a slide of Ryan White at the end of my talks related to HIV, and my closing line has been that I will remove it when there is no more stigma. I still show it today. Ryan was 13 when he was diagnosed with AIDS in December 1984 and faced unbelievable discrimination. Congress passed the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act in August 1990, four months after Ryan died. We cannot forget how far we have come and how much further we must go.
I joined Mount Sinai in January 2014 as the merger among several hospitals was occurring and we would be providing care to more than 10,000 persons with HIV. This was an opportunity for my research team to offer enrollment in clinical trials throughout the Mount Sinai Health System in order to reach more populations affected by HIV in search of less toxic and better-tolerated therapies for HIV, treatments for comorbidities, and strategies for a cure. We are proud of our accomplishments, having enrolled more than 1,000 patients of diverse backgrounds of race, ethnicity, gender, sexual orientation, religion, and socioeconomic status who have contributed to new strategies and licensing of new therapies.
I am blessed that I was friends with Robert Zackin, ScD, who was the first successful heart transplant in a person with AIDS who had a history of Kaposi sarcoma, cytomegalovirus, and disseminated MAC infection at the Cleveland Clinic. No one thought such a transplant could be done in these circumstances. While Robert unfortunately succumbed to a transplant-related infection 3½ years later, he paved the way for others to follow. I miss him every day.
Matthew Baney, MS
Matthew Baney, MS, Director, Institute for Advanced Medicine
I began working in the HIV/AIDS field in 1985. My motivation for doing so was very personal: I had lost many friends and two partners to the infection. I am most proud of the response we brought back in the early stages of the epidemic, addressing a health emergency in the community with care, compassion, and love. The same approach continues today in our work.
World AIDS Day helps remind us that the fight is not over with respect to HIV. People are living with the infection, while others continue to be infected. There is still plenty of work to do. The world has changed since the early stages of the epidemic, and the provision of health care has changed as well. It was forced to change, and we have improved our efforts on behalf of all patients.
Mount Sinai was one of the first institutions to address HIV/AIDS, and the system treated every patient as any other, once again with quality care and compassion. We brought equality to medical care, treating everyone as individuals in need. We equalized. Once again, we continue that approach today.
I have dedicated my professional career to the field of HIV/AIDS with the hope that in my lifetime there would be a cure. I still have the hope for the future. For my friends and my loved ones, I never forget you.
Michael Mullen, MD
Michael Mullen, MD, Executive Director, Institute for Advanced Medicine, Professor of Medicine (Infectious Diseases)
I have been working in this field for nearly 40 years. It has been an incredible journey. Before the development of effective treatment, an AIDS diagnosis was considered a “death sentence.” Those years were devastating. I lost so many patients, family members, a majority of my friends, and many colleagues. The numbers continued to increase over time. I remember losing five patients in one day. There was very little time to deal with the grief and loss.
Fortunately, effective treatments came into play, and it was astonishing to witness a uniformly fatal disease largely reverse its course. That being said, I can never forget those terrible days and those brave individuals who succumbed to this disease. In fact, my tears are flowing as I’m writing this.
World AIDS Day is a time to remember those lost and to spread awareness of the need to continue efforts on HIV/AIDS prevention and treatment. The number of new infections are overwhelmingly seen in communities that experience discrimination and exclusion. This is another example of disparities in health care. If we are going to see an end to this epidemic, there need to be continued efforts to advocate for funding and resources to address this need.
Many medical centers have closed their HIV/AIDS treatment centers, but Mount Sinai Health System’s leadership has continued to support specialized clinics for HIV/AIDS education, treatment, and prevention. Cheers to Mount Sinai!
Lorna Gottesman, LMSW
Lorna Gottesman, LMSW, Social Worker
In 1990, I started volunteering in what we then called “the fight against AIDS.” I was part of the Gay Men’s Health Crisis Buddy Program, providing one-on-one support to a person living with AIDS. I was also a peer educator at the Columbia University Gay Health Advocacy Project and sat in the back of Act Up meetings.
It was a way for me to find queer community in New York, and I was drawn to the work because HIV is the intersection of the most important issues in our culture. To really fight AIDS, I need to be anti-racist, and I need to be fighting homophobia and sexism, and I try to keep that the focus of my practice. I feel lucky that I can work one-on-one with people and be working for a better world.
My first job in HIV was at a shelter for homeless people with HIV/AIDS. From there, I went on to work at several small AIDS service organizations including the PWA Health Group (a buyer club started by Michael Callen that provided access to medications before they were approved by the Food and Drug Administration); the Women’s Prison Association; and WORLD (Women Organized to Respond to Life-Threatening Disease) in Oakland, California, started by a personal hero, Rebecca Denison. I also helped start SMART University in East Harlem.
I’ve worked at Mount Sinai’s Samuels Clinic for more than 19 years. I enjoy the mix of patients we have. I like that I never quite know what my workday will hold, and I’m grateful that my patients and coworkers trust me enough to keep teaching me. And I remember my friends Judith, Cherie, Dale, Bunny, Petra, Tommy, and so many others.
Dale Mandelman, RN
Dale Mandelman, RN, Manager, Patient Care Services
I was working in the former Beth Israel Medical Center Emergency Department in 1984, and it seemed as though we were taking care of many people who were very ill and with what? After a while, HIV was named. At the same time, I had made the switch to the clinic and left the Emergency Department. It felt like the right fit for me. Sadly, people were so sick, and the intimacy created between staff and patients was so intense. There was tremendous loss.
Many people were estranged from their families, and we often became substitutes. But a wonderful thing started to happen. New medications were being developed, and people were living longer with a better quality of life. Today, most people can do well by taking one pill daily. Being a nurse at the Peter Krueger Clinic could not be surpassed, in that we made a difference, got a lot of love, gave it back, and helped people accept their illness and how to best deal with it. It’s been one of the highlights of my life, and certainly as a nurse.
Dina Franchi, LCSW
Dina Franchi, LCSW, Assistant Director, Social Work
I have been working at the Peter Krueger Clinic and with people who are HIV positive since 1991. Prior to coming to Mount Sinai Beth Israel, I was working in a therapeutic community for people with addictions, and this was when I first encountered HIV and people who were infected with this illness. I was working with people who could not overcome their addictions and were now sick and, unfortunately, many were dying.
I began working at the Clinic because I wanted to provide support and caring to those ill with HIV and work with their families to educate them about this illness, and to break down the stigma associated with HIV. Mount Sinai Beth Israel was a leader in HIV care, and we worked not only with people who were HIV positive but also with their families. The work we do made and continues to make a difference in the lives of our patients.
Over the years, treatments for HIV have been able to provide people infected with HIV the ability to live their lives, not focusing on illness but on living life. I continue to see patients I first worked with when I started working at the Clinic. So, when I was asked about what World AIDS Day means to me, it means several things: Remembrance of those who lost their lives battling this illness; not forgetting how this fight started; resilience for the strength people with HIV have; and life itself.
I continue to hope for a cure for HIV, and I do hope it happens in my lifetime.
Sally Parisi-Esposito, RN
Sally Parisi-Esposito, RN, Mount Sinai Beth Israel / Peter Krueger Clinic
I have been part of Beth Israel since 1986, when I attended nursing school. I began working at the Peter Krueger Clinic in 1991 because I wanted to make a difference. When I started working, people died from being HIV positive, but now they live. I am proud to be a part of Beth Israel, an institution that was not afraid to do what was right.
Scott Barnett
Scott Barnett, Program Coordinator
Since 2018 I have been a Program Coordinator at the Mount Sinai Comprehensive Health Program in Chelsea. My current role is working with the Mount Sinai emergency departments and facilitating linkage to HIV treatment and prevention services. My career in HIV spans 30 years, having been a clinical research study coordinator and then an outreach coordinator, recruiting all communities to participate in the research process.
As a gay man who lived in Key West from 1982 to 1990, I witnessed the loss of an entire generation of young men. I have a photograph of me and 13 friends taken at a pool party in 1984. By 1989, five years later, only one other person and I were still alive. Also in 1984, I met the man with whom I would spend the next 16 years. Tim was diagnosed with advanced AIDS in 1991, and we moved to Baltimore to be near his family. He became a patient in the HIV clinic at The Johns Hopkins Hospital, and I started my career in HIV there as a volunteer. After his self-described “going away party,” Tim passed away at home with me in 2000, just before his 40th birthday.
Beginning with the approval of the first “cocktail” medications, through today’s powerful single-pill HIV treatments and now pre-and post-exposure prophylaxis (PrEP and PEP) to prevent infection, we have the ability to end the AIDS epidemic by making sure all people know their status. That all people living with HIV have equal access to care and treatment. That all individuals who feel at risk of infection have equal access to prevention services. And that all people have the same opportunity to be as healthy as possible.
I commemorate World AIDS Day 2022 by remembering all those whom we have lost, and by retaining joy for all those who remain HIV negative.
Janet Goldberg
Janet Goldberg, Development and Communications Director
I began working in the HIV/AIDS field in 1987. AIDS was insane at that point, with more than 50 patients in the hospital on one day, and people dying every day. We attended many advocacy meetings, and heard stories from around the world. One meeting was with a country’s leadership who were planning to isolate everyone with HIV in a camp to stop AIDS from spreading–alarming!
There were so many positive outcomes from those days: harm-reduction practices, needle exchanges, fast tracking of medication in trial in order to get it to people in need faster. I am always astounded by how much we have done, and how many of the struggles are still the same.
What keeps me going is the people—patients and staff—their passion, dedication, perseverance, and skill and ability to think outside the box to ensure that services are being developed and delivered in a way that meets clients’ needs. Truly inspiring.
World AIDS Day always brings me back to the beginning, reading all the names, the quilt when it first started, developing our service networks, developing services. How much we have accomplished, and how much there is to do. We have lowered infection rates and improved treatments—but we need a cure. That’s my hope; that this will happen soon.
Oscar Klein, MD
Oscar Klein, MD, Assistant Professor of Medicine (Infectious Diseases)
I have been involved with HIV/AIDS care since the beginning of the epidemic while in medical school in the early 1980s.
I was a resident and an attending physician at St. Vincent’s Hospital in New York during the worst of the epidemic, and I have continued to provide HIV care, which I proudly do at Mount Sinai. It is now, mostly, an outpatient chronic condition.
World AIDS Day allows us to focus on all the progress we have made, the ongoing improvements in the lives of people living with HIV, and to remember the work we have to do to expand the ability of all people with HIV to get the care they need.
I have always believed that it is a privilege to be able to work in the medical field. It has given me great satisfaction to be able to be involved in important moments and decisions in a patient’s life, and to feel that I have had a great impact on their sense of well-being.
I believe that our combined efforts in the labs, in clinical care, in protesting and organizing, and enlarging the circle of care will one day eradicate this epidemic.
Michael DeVidas, DSW, LCSW
Michael DeVidas, DSW, LCSW, Director of Social Work Services for Comprehensive Health Program and Jack Martin Clinic-Outpatient and Inpatient Practices
I’ve been at Mount Sinai for 20 years and a social worker for 38 years.
As a gay man in his early 20s, I have experienced the AIDS crisis since the early 1980s when clients with whom I worked, as well as friends, often died with little to no treatment available. The protesting and fighting to get medications approved for HIV and trying to keep people alive remains a struggle even now, based on one’s life circumstances and where you live. I became a social worker to make a difference in people’s lives. I have great admiration for long-term survivors of HIV/AIDS because I saw what they went through from the early days of the epidemic.
Mount Sinai became a leader in the battle to care for people with HIV. Since 1992, the Jack Martin Clinic and the inpatient service were models of HIV care in managing and advocating for the patients who came though Mount Sinai. When Mount Sinai added the St. Vincent’s Hospital HIV practice in 2010, our practice grew into the Institute for Advanced Medicine, serving more than 10,000 patients. I have great admiration for the providers, nurses, social workers, and other staff who show their dedication each day to keep our patients alive and thriving.
At this late stage of my social work career, I hope and pray a cure for HIV comes to fruition. I often think of all those patients and friends who lost their lives to AIDS. They are always missed.