From Fear to Hope: The HIV and AIDS Journey

- NIH watching people die.

- [Announcer] From a time of fear.

- There was just this dread if you caught this disease, it was certainty that you were gonna die.

- [Announcer] To a journey toward hope.

- HIV is is fairly easily treated with one pill once a day.

- I'm born with HIV, but I also have a son who's negative.

- [Announcer] With new drugs and therapies and one nation coming together.

- I think the Quilt had a really big impact.

People understanding that there is no us and them, there's we, - [Announcer] But the fight isn't over yet.

- In Miami, the highest risk for HIV is the Hispanic or Latino community.

- The narrative has to change the vernacular way it is being presented, the marketing, it needs to be so much more strategic and stronger.

- [Announcer] From fear to hope.

The HIV and AIDS journey chronicles the evolution of a movement and the unbreakable spirit that continues to drive this fight.

- [Announcer 1] Major funding for this program was provided by, the Quadracci Family Empowering Communities.

(pensive music) (pensive music) (pensive music) (choir sings "Challenges,) (everybody gets their share.")

- [Announcer] In 1978, the San Francisco Gay Men's Chorus was formed.

Jay Davidson is a co-founder.

(gentle music) Everybody feels this pain Everybody faces rain - We felt like we were pioneers.

We were starting something that hadn't been done before.

(harmonizing) We are survivors - [Announcer] But even as the Chorus went on their first national tour in 1981, news stories of rare and strange infections started to appear.

- There's a photo of a bunch of Chorus members reading an open newspaper that had a review of the concert from the night before.

And as they're standing behind this open newspaper, there's a small article about a mysterious disease that is affecting predominantly gay men.

- [Announcer] Those news stories were based on the CDC's June 5th Morbidity, and Mortality Weekly Report that cited five cases of a rare lung infection in Los Angeles.

One month later, another Morbidity and Mortality reported a cluster of rare cancers called Kaposi's sarcoma among gay men in New York and California.

And it was spreading.

Those reports mirrored what doctors and healthcare workers were seeing, including Dr. Anthony Fauci, who was a senior investigator at the National Institutes of Health at the time.

- On the 4th of July of 1981, another MMWR landed on my desk, now reporting 26 men, again, curiously all gay, not only from Los Angeles, but from New York City and San Francisco, presenting not only with pneumocystis pneumonia, but also with Kaposi's sarcoma.

And as I've often said, that was literally the first time in my medical career that I actually got goose pimples because I knew there was something very wrong and very new here.

- [Announcer] Both reports were the first official accountings of the mysterious and deadly disease that would become known as AIDS.

- There was no cause in the beginning.

We didn't know how big it was.

We just know it was increasing in frequency, and it was very serious.

- I can remember it was just a very sort of dark time.

(gentle music) - [Announcer] That dark time began a journey that started in fear, anger, and hopelessness.

It became a race by many to find answers and save lives.

There were those losing friends and loved ones.

- People walked up and down the street as they got more and more gaunt and or just disappeared.

- People were dying.

Our friends were dying around us.

- [Announcer] And there were those who were fighting to find what was causing outbreaks of infections and cancers and how to find a way to stop the dying.

- A lot of the people that we were seeing as patients with this very severe disease, many of them dying, were people that were my age that were young men.

- [Announcer] Dr. Carlos Del Rio was a young resident at Grady Health System in Atlanta.

What he saw during his rounds there had a profound effect on him.

- I identified, I said, "This is some people that look like me that are my age, that have this new infection."

So I did my training in infectious disease with the idea of dedicating myself to HIV, you know, seeing patients and of course doing research.

- [Announcer] Dr. Del Rio is one of many who have dedicated their lives to unravel the cause of this deadly disease and who shared the same passion to find a way to help those affected.

- Do you remember about the early years of HIV, the first patient you saw why you got involved in this?

Tell me a little bit about that.

- So I got involved in HIV really because of the early patients that I saw when I was in training at Grady Hospital.

And my first patient was a young Black man who was actually on the pediatrics ward, but he was almost aging out of pediatrics, but he was clearly a gay man who was very closeted and he had very unusual infections.

And it turns out that he had AIDS and nobody knew anything about his sexuality.

It was tragic to me, and it opened my eyes to the social justice part of this emerging epidemic and the kind of stigma that was attached to it from the very beginning.

- [Announcer] Stigma and discrimination were not new to the LGBTQ community, but as the outbreak of rare cancers and other opportunistic infections grew and mostly seemed to affect gay white men, many felt the stigma grow.

- At that time in the early 80s, there was still pretty widespread stigma against gay people in general.

- The fact that the general public and people in power perceived AIDS as a gay disease was a horrible obstacle in getting work done to do anything about it.

We often compared it to Legionnaire's disease.

20 people got sick on a cruise ship and boom, Legionnaire's disease was investigated, solved, treated, all taken care of, but hundreds and then thousands, and then tens of thousands of gay men and lots of other people get HIV and it's perceived as a gay disease and no one wants to deal with it.

- [Announcer] Shortly after those first reports from the CDC, a task force on Kaposi's and opportunistic infections was formed.

James Curran was the head of the task force.

- Well, I was detailed for 90 days to work on this with borrowed and begged staff.

- [Announcer] So in the summer of 81, the task force started collecting data from hospitals who were seeing these young men come in deadly ill. - The first thing that happened was that, we came up with a surveillance case definition to track cases, and we were aided by the fact that the cases were so unusual.

A physician who would see a man or a woman with Kaposi's sarcoma, one of these infections would say, "I've never seen anything like this in my entire career."

- [Announcer] Even as the task force focused on correlating the data they were collecting, there was a feeling among them that they weren't seeing the whole picture.

- We knew it was bigger than we'd see, but we didn't know how big.

And of course, we hoped it would be a pattern, like a, what we would think of as a normal infectious disease like hepatitis, where people could get infected and then they would develop an immune response and the virus would go away and a vaccine could developed that would mimic that and solve the problem.

So we had great hopes for a simpler solution, not a very long-term worldwide pandemic.

- [Announcer] That hope for a simple solution was soon dashed as they started to collect more information.

Late in the year, the CDC begins to see cases of the opportunistic infections among injection drug users, leading to the suggestion that the infections could be transmitted through blood.

By years end, there were over 300 cases of adults and adolescents, plus 16 children under 13 with severe immune deficiency, and 130 of those were dead by December 31st.

In early May of the next year, the New York Times publishes a story with the first mention of GRID, gay-related immunodeficiency, which is the term some researchers are using to describe what has become an epidemic.

There was still no definite theory of why and how the disease was spreading.

- It took some time to recognize exactly how the disease was transmitted.

You know, people were concerned at first, for example, that you could get it by kissing someone.

- [Announcer] The CDC task force was still hunting for what could be the cause.

And while most believed that it was sexually transmitted, they also looked at environmental factors like nitrite inhalants or poppers.

One of those asked to join the task force was William Darrow, then working in another department of the CDC.

- We wanted to know whether that was the cause or was it a confounding factor because it's associated with other things like sexual practices.

So we were trying to sort this all out.

- [Announcer] A break came while one of the task force members investigating cases of Kaposi's sarcoma in Los Angeles interviewed a patient and discovered a link between him, his sexual partner, and two other patients with the rare cancer in the same hospital.

- This is the first clue that we have that there might have been transmission from one person to another.

- [Announcer] Dr. Darrow was asked to go to Los Angeles and interview the patients and their sexual partners.

His first interview was with a patient at the VA hospital.

- I remembered this young man.

He was very seriously ill.

He's he, he hadn't shaved in quite some time.

He had the spots of of Kaposi's sarcoma.

His room was covered with get well cards and he was terribly ill. And he was talking about, you know, they're shoving the food under the door.

Nobody will come into my room.

They're treating me like a leper.

This is just terrible.

We interviewed that young man and we asked him about his sexual partners and so forth.

When I turned and looked out the window of the VA hospital in Los Angeles, I saw all these tombstones, all these graves out there, and I said, "Oh my God.

You know, I think we're just beginning to see the beginning of something that's gonna fill up graveyards like this."

- [Announcer] In June, the CDC publishes their findings linking a potentially sexually transmitted agent to the outbreaks of pneumocystis carinii pneumonia and other opportunistic infections among young gay men.

- So early on, the disease started in gay men, but then we learn about people with, you know, who use drugs, heroin primarily.

How did the the term AIDS emerge?

- Well, we couldn't call a Kaposi's sarcoma an opportunistic infections forever, and we wanted to have something that would tie that together and would show that it had a community origin, but it was mostly characterized by an acquired immune deficiency.

So AIDS made a lot of sense and it also was something that people could remember, and tie together.

- [Announcer] In the September 24th, Morbidity and Mortality Weekly Report, the CDC uses the term AIDS, Acquired Immune Deficiency Syndrome for the first time.

Late in the year, cases of AIDS are reported in an infant who received a blood transfusion and infants who have unexplained immunodeficiency and opportunistic infections who may have been infected by perinatal transmission.

In other words, in the womb.

In the beginning of 83, the CDC reports, the first cases of AIDS in women and adds female partners of men with AIDS to the at-risk groups, but it will be years before they're included in clinical trials or eligible for governmental support as AIDS patients.

- We had a big campaign with the CDC to change the definition of AIDS in women and the system was that you had to have certain diseases to be defined as having AIDS and to then be eligible for things like government support.

But the way HIV manifested itself in women was often different than in men.

There were gynecological manifestations of HIV in women, well, that certainly didn't apply to men, and therefore was not on the list of AIDS defining diseases.

- [Announcer] That push would be one of many.

When a few years later ACT UP would begin their campaigns of direct action for government movement on AIDS.

The spring of 1983 brought news from the CDC that AIDS may be caused by an infectious agent transmitted sexually or through exposure to blood or blood products.

Congress passes the first bill with funding for AIDS research and treatment, and a National AIDS hotline is started with three lines.

Before the month is over, it's expanded to eight as the response grows to between 8,000 to 10,000 callers daily.

In May of 1983 scientists at the Pasteur Institute discovered a new virus known as HIV was the cause of AIDS, and that stopping the spread of this virus could only happen if there were a global effort.

- We learned, of course pretty early on that there were cases not only in Haiti, but there were also cases in Sub-Saharan Africa.

Many of the early cases in Europe were from what is now the Democratic Republic of Congo or the Cameroon, on in Western Central Africa.

Because the epidemic was a worldwide epidemic that US not only had responsibility to work on, because we had the world's greatest amount of expertise, but we also had the need to understand the epidemic.

We needed to be there.

- You can't address an epidemic in this country if you don't address it everywhere.

We saw with COVID how quickly things can spread around the globe.

And we knew that with HIV long before COVID came along.

- [Announcer] As the cases and the deaths continued to grow, and researchers searched for answers, doctors were left to treat their patients the best they could.

- Anybody that came to my office and who was diagnosed with HIV essentially had a death sentence.

There was not a lot we can do for patients.

We could treat their opportunistic infections, but we knew that that person within, you know, the span of maybe a year, maybe two years, some of them maybe three years, they would die.

- I think what we did, what we provided for people, even though it seems it was mainly hospice care, was in a very hopeful and nurturing sort of situation.

- I learned that my job as a physician was not only to take care of the patient, but really to take care of them globally, that meant it was to, to help them die, to help them die with dignity, to help them, you know, combat the stigma that they were suffering could combat the discrimination that they were suffering to really give them a hug, give them a hand saying, "I'm here with you."

- [Announcer] The next year, the first commercial blood test to detect HIV is licensed by the Food and Drug Administration.

- It took two weeks to get the results and it was, you were associated with a code, a number.

And so people would have to call back to get their results two weeks later and people would call back and, "Are my results in, are my results in?"

And so, yeah, it was totally different than today.

You can find out within 20 minutes, but back in the 80s, it took several weeks before you could find out.

And so you can imagine people just kept were worrying and worrying and worrying, "Do I have this, this new disease or not?"

- [Announcer] Hollywood Icon Rock Hudson announces he has AIDS and passes away in October, leaving over $200,000 to fund AIDS research.

Four years into the crisis, African Americans and Latinos account for three times as many cases of AIDS than whites.

1985 ended with over 15,000 cases of AIDS, more than was reported in all earlier years combined.

At a dinner party one night in San Francisco, two friends Mike Smith and Cleve Jones discuss a way to bring awareness of AIDS to Middle America.

- Cleve had a crazy idea and we had dinner one night and he said, "There's this thing that I wanna do."

And I think to him, he said, "When I say the word quilt, I think of my grandmother making a quilt for grandchildren.

You think of mothers taking care of their kids when they're sick."

You think of middle America and oh, the thought that we might have something where people in middle America could understand what we were going through was just staggering.

- [Announcer] The NAMESs Project or the AIDS Memorial Quilt immediately struck a chord.

- We rented a little workshop on Castro Street and we put a big sign in the window that said, "We need sewing machines and tape and fabric and bedsheets and glue and whatever you've got 'cause we're gonna make this Quilt."

And that was a Friday night.

And we put the sign in the window and we came back Saturday morning and there was a line down the block of people holding scraps of fabric or carrying sewing machines.

And we were like, "This is it.

This is, at least within our community, this is gonna create the hub and the support place that people need."

- [Announcer] In 1986, Dr. C Everett Koop issues, the Surgeon General's report on AIDS calling for Sex and AIDS education.

1987 is a busy year for both those trying to find answers to the disease.

And those who were still losing loved ones.

In New York City, ACT UP held its first demonstration on Wall Street targeting pharmaceutical companies.

- The whole reason for ACT UP was anger at the lack of attention to the HIV/AIDS epidemic.

There were certainly people who were trying to address it in various ways through more standard nonprofit organizations through fundraising, through regular kinds of meetings.

But we weren't getting as far as fast as we wanted to.

- [Announcer] Ann, as a journalist and former teacher.

- We would go to act up meetings on a weekly basis and talk about who had died in the previous week, who was missing from the room.

And yes, we were furious about that.

There was fury at the lack of action to address HIV and people dying in front of us and all around us.

There was also the great comradery of the fact that we were all activists working together and doing spectacular and creative things to end the epidemic.

- [Announcer] The AIDS Memorial Quilt was taking off in 87.

Their first display would be on the mall in Washington DC.

- The March on Washington for Gay and Lesbian Rights was on October 11th, 1987.

And we decided that panels for the Quilt would be three feet by six feet 'cause it's the standard size of a grave.

And we wanted to take to Washington this fabric and lay it out on the mall, America's front yard, and it would represent the space people would've taken up if they'd been able to be there that day.

And so we got to work.

- [Announcer] And work they did.

- We had some panels, but not enough, not the kind of statement we wanted to make, but on September 13th or 14th, the post office called and Jack, our wonderful volunteer coordinator and sort of front desk person picks up the phone and the post office says, "You have an awful lot of mail here."

And Jack says, "Oh, well, we'll come down and we'll get it.

She said, "No, no, no, no.

Bring your truck."

And he had to make four trips.

And we opened up these panels and they were coming from all over the country.

They were coming mostly from mothers in small towns who had lost their son, couldn't tell their church what their son had died of.

Really had no other way to express their grief.

And these women knew how to sew.

These were not bedsheets and spray paint.

These were women who quilted.

These were women who were pouring their heart and their soul into something representing their son.

And everything changed.

(gentle music) We had made a commitment to preserve and display these panels.

We were gonna tell the stories of all of these men, mostly men, some children, some women, some hemophiliacs.

But we were gonna tell the story, their stories.

- [Announcer] That first display took up about half the mall in DC.

- Cleve and I woke up the next morning to, this was again, before there was a lot of communication methods there are now.

Two notes under the door from the hotel front desk saying, "When I'm ready for the Quilt to come to my city, I'll help you bring the Quilt to my city.

I'll pay."

Some people would say, "I'll pay to bring the Quilt to my city."

Other people said, "What do we need to do to get the Quilt there?"

You know, we also woke up to a book deal from Simon and Schuster and a movie deal from HBO, the next day that we had to figure out how to do.

And we had 2,000 panels of Quilt.

And now everyone knew about it and we're like, "Oh, the flood is going to come."

It was so colorful, it was so human.

It touched people in such a way that we never ever saw coming.

But it broke through it.

It started a national conversation about AIDS.

(gentle music) - [Announcer] And while the AIDS Quilt and ACT UP were bringing attention to those who died or were dying, pharmaceutical companies were scouring their inventory to see if any of their currently available medications could help.

A cancer drug, AZT was the breakthrough in a multi-year journey of fear and sorrow that offered hope.

- When AZT came out, there was a real sense of joy that it, it didn't seem like it was curing people, but it seemed like people were living longer.

You could just get that little glimmer of hope.

But a tremendous amount of that was done by private big pharma who were taking whatever they had in stock and trying to figure out what works for what.

It was not the big government push that we needed.

And then, you know, an AZT ran its course.

It had some really horrible side effects.

I still have friends with neuropathy who 30 years ago took AZT for a year or two and now are hobbled.

So it, and, but it brought them their life, frankly, so nobody's complaining.

- I can remember in 1987 when what had been a fairly toxic cancer drug, AZT was found to be partially effective in prolonging the life of people with AIDS in a trial conducted by the National Cancer Institute and others.

How wonderful it was to think that there would be an antiviral.

When that occurred, it gave everybody hope.

Now, of course, the drug didn't turn out to be that good for that long, but it opened the door for many other drugs that were related and somewhat related and eventually led to a huge breakthrough in antiviral therapy in 1996.

- [Announcer] That breakthrough would not only give hope, but begin one man's journey that would lead to more and better drugs.

- I consulted at pharmaceutical companies in the mid 80s, and became interested in general in medicinal chemistry and drug development.

And I had a lot of friends who were HIV positive who got very sick, many of whom passed away.

And I was annoyed that there wasn't a bigger effort by pharmaceutical companies to find new HIV drugs.

So I said, "I'm a pretty good chemist.

Maybe we can help in some way."

So I decided to take the plunge.

- [Announcer] Dennis Liotta and his colleagues would go on to develop many of the drugs that today are continuing to save lives.

- We just saw people, I mean literally getting resurrected from the dead.

I've had patients that were, I had very little hope for, and then these, these very effective drugs became available and literally people turned around on a dime.

(silence) (gentle music) - [Announcer] Future LGBQ activist Robert Boo grew up in a small town during the 1960s and 70s.

He initially kept his sexuality a secret.

- It wasn't until my senior year of college that I really came out to my friends.

Being from rural Indiana, small town of 900 people, it certainly wasn't anything that I could, you know, just talk about openly and freely with anyone.

- [Announcer] In 83, he was a recent college graduate when he first read about AIDS.

- I remember going to the library and seeing on a magazine cover, talking about this gay related cancer, gay related disease.

And I remember sitting there on the sofa in the library reading the article, but I folded it back so no one could tell what magazine I was reading and what article I may have been interested in.

- [Announcer] By the mid to late 80s, Robert was working in Chicago and very active in the LGBTQ community.

- HIV/AIDS started becoming more prevalent and I got involved.

I started volunteering with an organization that was trying to raise funds and bring awareness.

- [Announcer] Around that same time, researchers were trying to develop medications to fight HIV and AIDS.

- Back in 1989, that was a total black box.

So I think we were in the right place at the right time, - [Announcer] But the drug breakthroughs were not coming fast enough.

In August of 1989, the CDC reported the number of AIDS cases in the United States climbed to 100,000.

- Watching people die, NIH watching people die, watching people die.

- [Announcer] And in 1990 ACT UP stormed the National Institutes of Health to protest the slow progress on research and treatment efforts.

- There just was not enough research being done and it, even the research that was being done was not being acted upon fast enough.

Eventually people like Dr. Fauci brought us into his work to help design trials of AIDS drugs to change the way drugs were delivered to people because we were doing so much investigation and research of the actual issues.

(gentle music) - [Announcer] One of those infected was Ryan White.

Ryan was a hemophiliac who contracted HIV through contaminated blood.

School officials tried to prevent him from attending classes after his diagnosis and the legal battle launched him into the national spotlight.

- Ryan made a difference, I think because of his honesty and that smile.

He had a smile that made people listen.

And I think he had honesty to tell the truth and to just try to educate people.

I think he saw how the gay community was being treated and he didn't want others to be treated, anybody to be treated that way.

- [Announcer] Ryan fought the disease for five years, but eventually passed away in April of 1990.

Four months later, Congress passed the Ryan White Comprehensive AIDS Resources Emergency Act or the Ryan White Care Act.

That legislation created what is now the Ryan White HIV AIDS program that works to improve the quality and availability of HIV care and treatment for low income people with HIV to this day.

By 1992 HIV infection became the number one cause of death for US men ages 25 to 44.

Many in the gay community were dealing with their own stigma.

Robert encountered that with his best friend.

- He never disclosed to me that he had AIDS until his last couple of days.

And there was just this stigma, this fear, and this dread of if you caught this disease, it was certainty that you were gonna die.

'Cause the hope at that time was nothing.

(gentle music) - [Announcer] That feeling of hopelessness changed when researchers developed a drug that when used with other antiretroviral drugs would revolutionize HIV treatment and prolong lives.

- It paired up with so many different drugs that, uh, that really made it as effective as it is.

Remember, no one drug is, is viable against HIV.

We have to use combinations.

We would've never guessed how important it would've been.

But our tech transfer office here at Emory estimated that over 90% of HIV patients who are on therapy take or have taken one of the drugs that we developed.

- The real thing that made a difference was the antiretrovirals that came out.

And again, they came out in the summer of 96, right before the biggest of the Quilt displays that covered the whole mall and that really gave people hope.

- [Announcer] In October of 1996, the AIDS Memorial Quilt was displayed again on the National Mall and covered it in its entirety.

- I think the Quilt had a really big impact on people understanding that there is no us and them.

There's we.

- A lot of those panels were made by friends and family of people who had died.

And I must, you know, just to be sure, straight friends and family of people who had died.

And that once straight people realized that they had family, that they had friends, coworkers, members of their community who were gay and who they cared for, then that would shift the national dialogue about what it was like to be gay.

- [Announcer] As the AIDS crisis continued in the early 2000s, Robert Boo was living in San Diego.

He found himself traveling a lot for his job and missing time with family and friends.

- It was very lonely, it was very hard for me.

And so I went out to the clubs, I went out to the bath houses and so I let myself get exposed to situations that I knew better.

I knew I should not be doing, but I did.

- [Announcer] After not feeling well for months, Robert went to his doctor.

A few days later, he received a call asking him to come back in.

- Later that week, it was a Friday afternoon, I get a phone call and the doctor's office called and said, "Hey, can you come meet with a doctor?"

And they said, "Well, I just got home.

How about if I come in on Monday?"

And they were like, "No, no, no, we really wanna talk to you today."

So as I drove maybe the mile or to UCSD, I was filled with the dread 'cause I knew.

They immediately took me in.

And then the doctor gave me the news.

And of course it was very emotional.

I was crying and they were very comforting.

And it was the best environment to, if you're gonna receive really bad news like this, they provided the example of how to let me express myself, go through all of my emotions.

- [Announcer] After his diagnosis, Robert immediately began taking HIV medications.

- I started on the cocktails medication and things started improving.

And now research continues and more medication has come out and some of those old medications are no longer available.

And so now for example, I'm on two medications and I take twice a day.

- [Announcer] Robert's success with a medication regimen is very common in the United States today.

- When you see somebody newly diagnosed with HIV, if they could take their medicines, if they adhere to their therapies, if they can take their treatment, they can stay alive, they can essentially have a normal lifespan.

And that to me is truly amazing.

We've gone from a death sentence to a manageable condition in this day and age, and that is really fantastic.

- [Announcer] But at that time, that success was not the case everywhere in the world.

- (Fmr.

President George W. Bush) Nearly 30 million people have the AIDS virus, including 3 million children under the age 15.

There are whole countries in Africa where more than one-third of the adult population carries the infection.

- [Announcer] The next year, 2003, President George W. Bush announces PEPFAR, a $15 billion five year plan to fight AIDS in countries that have a high HIV infection rate.

A move many researchers and doctors felt was greatly needed.

- If we want to eliminate HIV and we can, and I know we'll get there one day and in this country probably relatively soon, we need to address it everywhere.

- [Announcer] In June of 2006, the CDC reports that more than 22 million people worldwide, including more than 500,000 people in the U.S. have died of HIV or AIDS since 1981.

Even as researchers worked to develop more drugs, others were searching for a cure, but they were finding it was hard to fight HIV once it took hold in a person's body.

- The barriers to finding a cure for HIV stem from the fact that it is a virus that integrates into the genome of a person.

And once it has done that if it is not actively replicating, it basically hides from the immune system.

And it's a silent infection in many cases in which the immune system just doesn't see it.

And so the virus persists.

- [Announcer] While that search continues.

At Atlanta's Ponce De Leone Center, part of the Grady health system, community workers help HIV patients alongside of the doctors and nurses.

The Ponce's director is Eric Paul Leue.

He knows firsthand about the deadly impact HIV stigma can have.

He says it killed his partner and mentor Stefan.

- When I looked at Stefan's eyes in 2004 as he was laying in his bed, dying of HIV, at a time when we had all the medications that we could need in order to prevent that death.

And he looked me in the eye and the last words that he said to me were, "Don't let this happen again."

And what he meant with that was he got killed by stigma.

That was his death sentence.

It wasn't the virus.

Sure, the virus impacts the immune system, right?

And then you take your pills every day.

Okay?

Yes.

And we don't wanna minimize that, but for him it was how he was treated by others because he was living with HIV.

- [Announcer] Jonathan Colasanti also works at the Ponce Center.

He had an experience with HIV stigma when he was a teenager.

- When I was a kid, I was in middle school.

And a woman with HIV at the time came to speak at our school and assembly and talked about the stigma and the discrimination that she faced after receiving a diagnosis.

And I wondered why people treated folks with HIV differently and just said I wanted to get involved, and found ways in the community to get involved, and then wanted to follow that pathway in medicine - [Announcer] Colleague Justine Davenport, a community health worker at the Ponce Center, also found a pathway to help others and to live a full and happy life herself.

Justine discovered in her teens that she was HIV positive.

She had been infected at birth, but wasn't told about her condition until much later on.

She's been taking HIV medication for more than a decade.

- I'm born with HIV.

But I also have a son who's negative.

He does not live with HIV and he could live a nice healthy life, but also I am actually living a healthy life.

- What drove you to do this work?

- I wasn't aware, although I've been living with HIV all my life, I was not aware of the need and people were really not living life that I think they should, they were not thriving - [Announcer] In 2012, the FDA approves a one pill daily PrEP regimen to help reduce the chances of getting an HIV infection for people who are at high risk of being exposed to the virus through sex or injection drug use.

But getting people to use it can be difficult.

- PrEP is a fundamental tool, stands for pre-exposure prophylaxis.

And this is the use of a medicine to prevent acquiring HIV if you're exposed to it.

And as you know, it's become incredibly potent.

Right now a person can take one pill once a day and they're covered from becoming HIV infected if exposed to the virus.

And all they have to do is take that pill as prescribed.

- [Announcer] But not everyone who needs PrEP is getting it.

So we know that HIV disproportionately affects people of color, people who are living in poverty and other marginalized populations such as LGBTQ folks.

And what we see is a little bit of a mismatch between who's using PrEP and benefitting from PrEP and who's acquiring HIV.

So we're still not reaching the most effective populations as well as we could be in order to prevent as much HIV as we'd like to.

- [Announcer] That mismatch was even evident in the gay community.

- PrEP came out in 2012.

There was that stigma of, "Oh, you're a PrEP whore and you know, you take it just so you can go out and do everything that you're not supposed to be doing."

And so it took even a couple of years of education within our own community, much less than medical community.

'Cause not all the doctors were aware of it and they didn't know anything about it.

And so it really took a couple of years before it gained its footing where it can now be.

I signed up for PrEP, I'm planning ahead and I'm preventing myself and I'm protecting myself.

- [Announcer] And PrEP has become easier to take.

- So when PrEP was first approved in 2012, it was taking one pill once a day to prevent HIV infection.

And then from there it evolved a bit so that people could take a few pills just around the time when they thought they might be exposed, either by sex or needle sharing that could also be effective at preventing HIV infection.

And then just a couple of years, very exciting, we had the first injectable agent approved by the Food and Drug Administration.

So a person just has to get that injection every two months to protect them against acquiring HIV.

- We know that in an individual person who takes PrEP, their risk of acquiring HIV is greatly reduced, reduced to near zero.

But the question that we wanted to ask was, is that true at the population level?

- [Announcer] Epidemiologist, Patrick Sullivan created a series of color coded maps that broke down the numbers of HIV infections in the United States.

Patrick's maps showed what doctors and researchers were discovering.

The epicenters of new HIV infections had moved from places like Los Angeles and New York City South to the Atlanta, Georgia, and South Florida areas.

- 52% of all HIV new infections occur in the Southern United States.

42% of all HIV new infections occur in the African American Black communities.

Yet out of all of the US population, only 13% of them, only 13% represent the African American community.

So when we think about those data points and what do we see in them, we see disproportionate impact that predominantly impacts communities that have a hard time accessing healthcare.

- We've had such tremendous successes in HIV medicine and that HIV is no longer a deadly disease.

It is fairly easily treated with one pill once a day and people then go on to live long and healthy lives even when they're living with HIV.

So while these successes have just been remarkable, the truth is that in some places the United States and in certain communities in the United States, and again, we're talking about the disparities that we know about HIV being that it affects people of color, people living in poverty, other marginalized populations.

There is still a lot of HIV and we are still seeing rates of new HIV infections that are unacceptable.

- [Announcer] Part of the problem is that in some communities, sex and sexuality is not talked about.

- In the Black community we have this thing that what happens in the home stays in the home.

And if you grew up in a Black church, we don't talk about sexuality.

And so if you don't talk about things, then you're just doing things.

It's like we don't talk about that because in the Black community that was shameful.

I mean, things are changing that, you know, they're more materials, and they're more knowledge about sexuality.

But it still stems from the beginning.

Your grandparents, you know, your parents and "Oh, we are not gonna talk about that.

'Cause that's taboo."

- [Announcer] Masonia who is living with HIV believes an important issue is the message and the information has to get out to the people at risk.

- I had a conversation a couple days ago and I asked a young lady, "How do you prevent HIV?"

And she said, "Well, you use condoms or you don't have sex at all."

And I said, "Okay, that's two ways.

What's another?

You're missing one."

She's like, "I don't understand."

I said, "Well, you mentioned abstinence and you mentioned protection in regards to condoms, but what's another way that you could protect yourself?"

She said, "I don't know."

I said, "Have you heard of PrEP?"

And she's like, "I have.

But is that for women?"

The narrative has to change - Definitely, I think.

And then the vernacular way is being presented, the marketing, it needs to be so much more strategic and stronger.

(gentle music) - [Announcer] In Miami, which statistics show is the new epicenter of HIV infections.

Dr. Hansel Tookes of the University of Miami is passionate about getting PrEP to everyone who needs it.

- One out of every 85 adults in Miami has HIV.

So we are doing HIV testing, we are getting people into care.

We are offering PrEP, the pill that prevents HIV, we're offering treatment for substance use disorder.

- [Announcer] Many of those coming in now are young Hispanic males.

- The community in Miami that's at highest risk for HIV is the community of men who have sex with men who are Hispanic or Latino.

We've seen those rates actually go up.

That's the majority of new HIV infections.

And that's community that we really need to reach in terms of prevention and treatment.

The lower socioeconomic status folks from the Black Community, we have an issue where people have a lot of stigma, and a lot of trouble with access to care and a lot of shame.

And that community in particular, we have challenges with advanced HIV where people have opportunistic infections.

People are very, very sick.

So we have a lot of work to do.

Miami is the diaspora and we have a lot of work to do to reach these communities in need.

- If we can't end this epidemic in young, black and brown gay and bisexual men, we can't end the epidemic.

And I think we are bumping up against the so-called social determinants of health.

I like to think of them as our society's inequities and our society's failures.

- [Announcer] But it's not just men.

- We know, for instance, that although there's been progress in reduction of new diagnoses across the board, that progress among Latino and Hispanic persons and Black persons is less.

We also know that as many as one in five new diagnoses are among women for a disease that too many people still think affects only MSM.

That's men who have sex with men or gay men.

Among those women in 2022, half or Black or African American, another roughly 25% were Hispanic or Latino.

So this is a disease that among women is very disproportionately affecting women of color.

- If you look at statistics here in Palm Beach County, the largest number of new HIV infections are actually amongst Black heterosexual females.

And if you look at it across the country, specifically in the South, we're seeing higher numbers of Black heterosexual females - [Announcer] Further North in South Florida, in Palm Beach County, the Compass Community Center works with those impacted by HIV and AIDS.

- So internally we have noticed larger number of Latinx individuals who are either getting tested for the first time, either coming back into care, then what does that mean?

Like getting onto HIV treatment, so on and so forth.

Or testing positive for HIV and then getting linked into services and in having some conversations with folks, not only our staff internally, but also individuals who are getting tested.

One of the biggest concerns that I've heard is my documentation status going to affect me getting services?

And if so, why would I even get tested if I'm not gonna be able to get services?

And being able to have conversations with folks, especially in their native language to help destigmatize the HIV testing process.

The HIV medication process has really helped.

- HIV stigma still exists.

There is still shaming that goes on.

- [Announcer] Robert Boo has taken the lead role at the Pride Center, at Equality park at Wilton Manors in Broward County.

- We don't have doctors or nurses.

So we go out into the community where people are.

So whether that is at Walgreens or at the treatment centers, the sex clubs, we go wherever the community goes.

And so we try to educate people and we provide condoms, lube, information, linkages services.

So if someone does become HIV infected, we can link them to a doctor, we can link them to medication and then we follow up with them to ensure that how was your first doctor's visit?

How are you doing with the medication?

And so it really is trying to take care of the community and provide that safe space.

- [Announcer] In 2013, another major milestone was reached when President Barack Obama signed the HIV Organ Policy Equity or HOPE Act into law, which allows kidney or liver transplants from donors with HIV.

Until recently, HIV positive people were not allowed to donate organs.

- I am living with HIV since I was six weeks old.

I acquired it through a blood transfusion in 1983.

- [Announcer] Nina Martinez was the first living donor in 2019.

- I'm not donating to an HIV negative person.

I'm donating to another person with HIV.

And when people with HIV are twice as likely to die on the transplant wait list as transplant candidates not living with HIV, this expanded donor pool helps people get transplanted faster.

But it's not just benefitting people with HIV, it's everybody.

- Benefitting everybody, right?

- Yes.

So the more donors you have, but the problem is, is that stigma still exists and you have surgeons who don't wanna operate on people with HIV, they don't wanna recover organs from donors who have made the legally binding decision to register their donation choice.

So that is still an ongoing issue despite all of the scientific advancements.

- [Announcer] For those working to fight HIV, the struggle is still not finished.

- You know, especially when you look at something like HIV where we really went through these stages, where we had nothing and we got the first tools, they were really complicated, but at least they saved lives to the point of having tools where we're now looking at the potential of maybe a shot twice a year for some of our patients as sufficient to treat their infection or to prevent an infection, I think is really powerful.

- [Announcer] And even with all the advancements of new drugs and treatments, there are still mountains to be climbed.

- While many people at the National Institutes of Health are very, very dedicated to HIV and H finding in HIV cure, doesn't have the priority that it once had.

And I think that's largely related to the fact that it is a treatable condition.

But the funding, I cannot state how important it is.

I think the holy grail in terms of the cure is to try to come up with a way to eradicate all those cells that are infected, and are sort of infected latently so that the immune system doesn't see the virus and get those all out of the body.

- [Announcer] And battles to be won.

- The thing about the HIV/AIDS epidemic is there's no one way to work on it.

We needed everybody doing a million different things at approaching this from every possible angle.

- [Announcer] And their journey is not done.

- Currently in our country, there are about 35,000 new infections per year, you know, to be able to bring the new infections down to less than 10,000 and to be able to bring mortality essentially down to zero would be, will be dramatic, right?

That will be a huge difference.

And we can do it.

We have the tools to do it.

The question is, do we have the political will?

Do we have the societal will to achieve it?

- [Announcer] But for those living healthy lives with HIV, the future is hopeful.

- You can live your life with HIV and be successful.

Like, don't let HIV stop you.

- [Announcer] As today's activists work to get the word out about simple medication regimens that can lead those with HIV to long lasting health.

In 2019, the AIDS Memorial Quilt found a new home at the National AIDS Memorial.

The letters, photos, and other artifacts sent in with the panels were given to the Library of Congress.

So their names and stories will be remembered.

525,600 minutes How do you measure Measure a year (the Chorus clapping and harmonizing) (gentle music) - The earliest sections of Quilt, those are people who paid a horrible price and we need to remember them.

(gentle music) - When I look back, I miss my friends and all of the people that we lost to AIDS, what if they had lived, how different would the world be?

What contributions would they have made?

(pensive music) (pensive music) (pensive music) (pensive music) - [Announcer 1] Major funding for this program was provided by, the Quadracci Family.

Empowering Communities.

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