My friend Christopher found out that he had AIDS in 1994. Prof. Robert Garofalo looks after adolescents with HIV. He received his HIV diagnosis in 2010. In our conversation, we discussed their experience of living with HIV after their diagnoses over a decade apart.
Today, many people living with HIV consider it to be a chronic condition. But this was not always so. Until the advent of treatments that could successfully suppress the virus, receiving an HIV diagnosis was essentially on par with a death sentence.
The approval of the first combination antiretroviral treatments in the late 1990s proved a game-changer for those living with HIV and AIDS.
Nowadays, there are options to take preventive medication to reduce the risk of contracting HIV. The number of people contracting the virus is slowly declining in many parts of the world. Yet, we are far from eradicating the virus or successfully addressing the multifactorial issues that people living with HIV find themselves navigating.
To explore how much has changed since the first reports of a rare lung infection in 1981, I spoke to two people who live with HIV.
Dr. Robert Garofalo is the Chief of Adolescent Medicine in the Department of Pediatrics at Northwestern University Feinberg School of Medicine in Chicago, IL, as well as a professor of pediatrics at Ann and Robert H. Lurie Children’s Hospital of Chicago. Rob received his HIV diagnosis in 2010.
The other person is my friend Christopher, who worked as a dancer, then as a childcare practitioner both in the United Kingdom and in Chicago before retraining as a dispensing optician. Christopher moved back to the U.K. in 1994. He found out that he had AIDS not long after.
In our conversation, both Rob and Christopher shared how they found out that they were HIV-positive. They talked about the pivotal factors that helped them cope with their diagnosis and living with HIV long-term.
We also discussed their views on the continued stigma surrounding those living with HIV and what the future may hold.
Please note: This article contains some content that our readers may find distressing.
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Our oldest memories of HIV/AIDS
My first question to both Rob and Christopher was when they first heard about people falling ill with what we now know as AIDS.
For Christopher, his memory went back to his time in Chicago.
Christopher: “I suppose 1984 is when we heard about what is [now] called AIDS, and at the time, it seemed so remote.”
Rob: “I remember walking through the streets of New York City as a teenager, and I saw a headline on a throwaway newspaper that said AIDS in the gay community. And I think that was the first time that I had heard of AIDS.
I was in college in the mid-80s, and I can just remember people getting sick and going to the hospital and not coming back to their dorm. There was just so much secrecy and stigma. Back then, it was a really challenging time to deal with.”
There was another moment that stood out to Rob. When Princess Diana visited Harlem Hospital in New York City in 1989, she hugged a 7-year-old boy with AIDS.
Rob: “That has always been an image, I think that has resonated with me. As a pediatrician and as a care provider, [it] is one of the earliest moments that I can remember people thinking about and talking about the HIV epidemic.”
As Medical News Today’s Research Editor, I have been following how the treatment of HIV has changed over the years.
My own earliest memory harks back to 1987, when the Food and Drug Administration (FDA) approved the first drug for the treatment of HIV, Zidovudine, which many people referred to as AZT.
My 6-year-old self was full of questions about this disease called AIDS that I heard about on the news. My parents explained that this was a new disease and that many people were getting very sick and dying. They assured me that by the time I was older, there would be a treatment and maybe even a vaccine.
‘We still have a long way to go’
According to the Joint United Nations Programme on HIV and AIDS (UNAIDS), more than 78 million people have contracted HIV since the 1980s. More than 35 million people have died due to AIDS-related illness.
In 2019, around 38 million people were living with HIV globally, of which 1.8 million are children under the age of 14.
In 2020, around 26 million people worldwide were accessing retroviral therapy. On the flip side, this means that about 12 million people are not using this lifesaving treatment.
The number of new HIV infections each year is down by 40% compared to the peak year of 1998. AIDS-related deaths are down by 60% each year compared to the peak in 2004.
While these numbers are impressive, around 690,000 people died from AIDS-related illness in 2019.
According to the Centers for Disease Control and Prevention (CDC), 1.2 million people in the United States currently live with HIV. In 2017, 16,358 people with HIV died, and 5,534 of those deaths were from HIV-related causes.
These figures clearly highlight the immense progress in the prevention, diagnosis, and treatment of HIV.
Rob was clear in his views on whether we had made enough progress.
Rob: “We have made tremendous public health inroads in the past 25–30 years. The medications are not just good; they are lifesaving.
But we still have a long way to go with regard to how stigma is felt by people living with HIV. And also, there are still some challenges around prevention and making sure that these lifesaving medications are accessible in all regions of the world.”
From ‘deadly’ to ‘chronic disease’
Christopher took the opportunity to reflect on how much things have changed since he first heard of HIV and AIDS.
Christopher:” I began to see people I know being very ill and dying very quickly. One of my closest friends when I first went to Chicago was one of the first people to [contract] the disease and die very quickly. So, it hit me very, very hard.
Then in the late 80s, […], a lot of my clients just died. In gay society, it was very prevalent in people’s minds and in their conversations.”
Christopher recalled many such conversations. Some involved visiting the hospital to see a sick friend. He would meet his friend’s parents there, and then the friend would die shortly after.
Christopher: “What happened when the combination therapy came out; it changed the whole perspective of the disease because it began to be something you didn’t die from. Then, of course, it progressed to what it is now, which is similar to having diabetes. It’s a wonderful thing. Personally, and for everyone else.”
Rob: “Christopher raises some really, really important points. There was a pivot. At some point, in the late 1990s, [HIV and AIDS went from being] a disease that universally was felt to be deadly to a disease where people began to think of it as a chronic illness.
As a physician and a pediatrician, my practice went from a largely in-patient based HIV practice to now [having] a largely outpatient base. [Now] I talk to my patients about [making] sure they have retirement plans and planning on living happy and fulfilling lives.”
‘I don’t want to die’
In 2018, nearly 38,000 people in the U.S. received a diagnosis of HIV. Both Rob and Christopher recounted the moment when they found out about their HIV status.
After returning to the U.K., Christopher had opened a new optical store for a friend in London. He noticed that he was having trouble maintaining his weight. Then he developed oral thrush. His doctor suggested that he take an HIV test.
Two weeks later, he went to pick up his results.
Christopher: “ I was on my way to work, and I stopped at the hospital. [I parked] the car, ran in, and they told me the news, which was that I had AIDS.
The feelings are indescribable. It’s not a feeling; I just knew I was going to die.
[I thought back to the time] before the combination therapies had come out, and I [had seen so many of] my other friends die. And I thought I’m not ready to go. And I had to go to work. It was a really tough moment.”
Rob shared how he came to his HIV diagnosis, which he explained was not easy for him to talk about.
Rob: “I believe that I [contracted the virus] after a pretty brutal physical and sexual assault.
I had spent my life caring for young people living with HIV. And I had a lot of guilt and shame around something that I really had no control over.
I couldn’t change what had happened to me, and I couldn’t alter the fact that I was the victim of a crime, but I did have the power to change how I was going to respond to that.
About 6 weeks after my assault, I felt very sick and had prolonged fevers. All of a sudden I remember being in the clinic caring for young people again with HIV. And all of a sudden, I thought, oh my God, maybe this is HIV.
I ran up to my office, I closed the door, and I closed the lights, and I self-administered an oral test for HIV. And I just sat and cried in my office when the test came back as positive.”
It is evident in our conversation that this memory takes its toll on Rob. Yet, within seconds, he continued.
Rob: “In many ways, now I see my HIV positive diagnosis as a blessing. I think it’s made me a better physician, [and] in many ways, it’s made me a better person.”
‘I got very, very sick’
Until 1996, treatment for HIV and AIDS was limited to taking one or sometimes two antiretroviral drugs. But drug resistance was a serious issue, and for many people, the pills did not work well for long.
This changed significantly with the advent of combination drug regimens. These can significantly reduce the amount of virus in a person’s body, allowing the immune system to recover.
For Christopher, these drugs came just at the right time.
Christopher: “It was such uncharted territory for me because, in the space of 5 minutes, my life changed completely. [That day] I went to work, but I broke down, and I had to go home. I went to see a friend of mine, and I just poured my heart out; I mean, I literally cried all day. And I remember saying, I don’t want to die. I’m not ready to die.
After I’d seen her, I went to see my closest friend that evening and I told him, and we talked. It was a very one-note conversation. I don’t want to die, and I’m not ready to die.
And when I went home to my apartment that night, I sat at the bottom of the stairs and just cried like I’ve never cried before.
I think somehow in my head, I thought, okay, you either sit in this corner and give up or you go on.”
This is the first time that I have heard Christopher’s voice tremble ever so slightly. He told us what came after his diagnosis.
Christopher: “ I got very, very sick. I’ve got pneumocystis pneumonia, I was in the hospital for 3 months, and I nearly died.
[Afterward,] I had trouble walking, so they thought that [the virus had] gone into my brain, which it hadn’t.”
It was a hard time, but I knew I would survive it.
[Just] as I was diagnosed, the first antiretroviral combination drugs came out, and I got the first ones, which I have to tell you were hideous because they make you feel very sick.
They told me I had a 40% chance of survival. And so here I am. It was a fantastic time, ironically, to be diagnosed with AIDS.”
Finding your ‘Fred’
Rob: “I think it’s really important to talk about what helped us survive, and I think Christopher is really tapped into things that are really important here.
My HIV diagnosis was a life lesson [in being] authentic and honest. I found solace and peace in the connection to my family and friends who were supportive, and I adopted a dog.
My dog, Fred, quite literally saved my life at a moment when I really was not sure whether I would live to see another day. That dog was a source of positive energy and a source of connection and support at a time when unconditional love was, I felt, elusive for me.
And so, learning how to be authentic and honest about my disease and finding a connection with my dog or with people that loved me was really critical, and at the core, for me, was actually finding purpose in my HIV diagnosis.”
Rob started a charity called Fred Says, which raises money to support adolescents with HIV. This gave him a direction and a purpose.
Fred also inspired Rob to work with photographer Jesse Freidin on documenting the stories of other people living with HIV and the importance that their dogs had in their journeys.
Their book, When Dogs Heal, is due out in March 2021, with a proportion of the proceeds going to the Fred Says charity.
For Christopher, his Fred equivalent was the support of his friends and his volunteering work.
Christopher: “One day, I had two friends of mine walk ahead of me, and I was walking behind. And I just felt dirty, and it wasn’t a feeling I enjoyed.
I needed to get over that feeling. I ended up training to become a counselor for Childline.
I couldn’t work anymore, but I could devote 3afternoons a week to telephone counseling for children in crisis. And so that was my Fred.”
Unique empathy
Christopher’s devotion to supporting children in need clearly resonated with Rob.
Rob: “You know, people like Christopher, [who] are the heroes in this disease, who were diagnosed at a much different time than I, and are still living their best life and surviving and finding their own purpose.
The fact that Christopher found solace and support in volunteering and doing work with children is really just a beautiful testament to the empathy that I think a lot of people with HIV have toward other people.”
When Christopher reflected on Rob’s words, he told us that a near-death experience inevitably serves as an inflection point.
Christopher: “I think you have to re-evaluate the human being that you are and give thanks to absolutely every day that you’re here. For me, that’s absolutely important because this was time I wasn’t gonna have. I am a different person to that person who was dying.”
Rob: “What [Christopher is] describing is a state of gratitude that I think seems not as intuitive to people that aren’t living with HIV.
But for many of us that are dealing with HIV on a daily basis, I feel tremendously grateful to wake up every morning and get to make the day the best day that I can.”
Rob’s gratitude extends to the medications that allow him to stay healthy and to his family, his dog Fred, and his colleagues at work
“It’s not easy to be an openly gay male pediatrician who’s HIV positive. And yet again, if I remain true to who I am and stay honest and authentic, those qualities have always proven to be a superpower for me in some ways.”
– Rob
Rob was keen to point out that both he and Christopher were white males who had access to healthcare. This is in stark contrast to minority and marginalized groups who do not have this privilege, as he put it.
Too many people still do not have equal access to livesaving medication. And too often, those living with HIV continue to experience discrimination and stigma.
‘None of us did anything wrong’
Both Rob and Christopher argued strongly in favor of addressing the blame culture around HIV.
Christopher: “One of the most important things to say is that I believe that a lot of gay men in the 80s blame themselves. And that was a really tough thing to live with. We all did. And, well, I blame myself, and that was hard to get over because it isn’t your fault.
If just living your life gives you this disease, then it isn’t your fault.”
Rob: “However, many years later, I still blame myself, even though I was the victim of an assault. It’s one of the reasons why I actually don’t like talking about my assault within the context of acquiring an HIV diagnosis.
Because here’s the dynamic that often happens. It goes back to one of the statements Christopher made earlier, which is if I say [that] I believe I acquired HIV because I was the victim of assault, then a lot of people [will] feel bad for me [and say], oh well, then you didn’t do anything wrong.
And I hate that. Because none of us did anything wrong. This isn’t an illness that affects or infects bad people who have done bad things. This is an infectious agent or disease that has affected large swaths of a community for just being who they are and living their lives.
We were just living our lives. And so, and as part of living our lives, far, far too many of us [contracted] HIV. But it’s not about blame; it shouldn’t be about guilt. It shouldn’t be about shame; none of those things help; those are destructive.
And so, you know, I will fight to my dying day to like try to remove those elements from anybody else who is grappling with this disease or diagnosis.”
What does the future hold?
At the end of our conversation, we reflected on our discussion and shared our predictions for the future.
Rob was optimistic that a target of zero new HIV cases was achievable. Yet, he had to caveat that reaching zero new cases would still leave entire generations of people living with the virus, facing the challenges of ongoing treatment and stigma.
Rob: “I’m optimistic that we will get to zero in my lifetime. And that’s amazing. So I do have a tremendous amount of optimism. I tend to be an optimist by nature.
I do think that we still have a lot of inroads to make in other parts of the world. I’m doing this project right now in Nigeria with young gay men. The amount of stigma and fear that they live under as gay men and as people impacted by HIV is almost indescribable in comparison to what I might have experienced here in the U.S.
There are still many cultural contexts that are important, but I am optimistic about the future. I really believe that this is a disease and illness that we can eradicate.”
Christopher was more cautious in his prediction. While he did believe that it was possible to eradicate HIV, he pointed to the challenges of achieving this globally.
Christopher: “[HIV] may be eradicated in the western world in the next 10-15 years, and then what do we do?”
He drew parallels with the COVID-19 pandemic, pointing to the shared global will to develop treatments and vaccines.
As for myself, I hope one day, my children can look back and not be in the same position that I am in today.
I hope that they will not find themselves reflecting on the huge progress made while also facing the ongoing challenges that continue to cost the lives of people, particularly in emerging countries and in underserved communities.
This year’s theme for World AIDS Day is “Global solidarity, shared responsibility.” It is clear that the eradication of HIV will require a global effort with a view to equal access to treatment and prevention for all.
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