The doctor with the Magic touch

We now move to the 1990s.

Dr David Ho, Time Magazine’s 1996 Person of the Year and personal doctor to basketball legend Magic Johnson, talks to our host, Femi Oke, about his role in developing pioneering combination drug therapy. This treatment breakthrough helped transform HIV from a likely death sentence into a manageable condition if you had access to care and medication.

We are also joined by three HIV activists who were all diagnosed young and kept their status a secret for many years:

•             Doreen Moraa Moracha, social media influencer from Kenya, who was born with HIV in 1992

•             Nathaniel Hall, star of television’s ''It’s a Sin'', which tells the story of the early years of AIDS in the UK, on his HIV diagnosis at age 16

•             Shawn Decker, POZ magazine blogger, musician and educator, who contracted HIV as a child through the use of blood products to treat haemophilia.

Plus, hear about the latest scientific advances from IAS 2021 – the 11th IAS Conference on HIV Science – that are revolutionizing treatment, as well as prevention. These include leveraging long-acting implants and injections so that people no longer have to rely on daily pills.


ViiV Healthcare: NP-GBL-HVU-PCST-210004
Date of preparation: June-2021

Transcript

Femi Oke:

Welcome to HIV Unmuted, the IAS, International Aid Society podcast. I'm your host, Femi Oke. Our last episode focused on the discovery of HIV in 1983, the virus that causes AIDS. This discovery paved the way for HIV treatment and hope for a cure. But the decade ended with rising deaths worldwide, expensive treatment with many side effects, and no cure in sight. We now move to the 1990s. The Berlin Wall has just fallen. The worldwide web has been invented and Nelson Mandela is released from prison.

But the 1990s kicked off with great sadness. American child activist, Ryan White, known for speaking out about living with HIV, died. Icon Freddie Mercury also passed away from AIDS related illnesses. And 8 to 10 million people were thought to be living with HIV worldwide. It wasn't a good beginning to what would be the decade of transformational scientific advances for HIV treatment. But in 1991, American sports icon, Magic Johnson, a straight male, announced that he was living with HIV, changing public perception worldwide.

Magic Johnson:

Because of the HIV virus that I have attained, I will have to retire from the Lakers today.

Femi Oke:

More on his story later. First, let's take a look at how children like Ryan White also challenged the stereotypes of people living with HIV. Shawn Decker was diagnosed at age 11.

Shawn Decker:

I contracted HIV through the use of blood products to treat hemophilia. I think being diagnosed at age 11 was difficult. I think it's difficult for any age. There was a lot of misinformation, a lot of fear.

Femi Oke:

That fear led most people to keep their HIV status, a deeply held secret. Like Shawn, Doreen Moraa Moracha of Kenya was diagnosed young and warned to be quiet about it.

Doreen:

My mom found out about my status when I was eight years old. And I did not know that I had HIV up until five years later, which was when I was 13. I was told, never tell anyone you're living with HIV.

Femi Oke:

Both Doreen and Shawn's families were given dire predictions.

Doreen:

But when they found out, they even told my parents, "We're not really going to give her a long time to live. We're just going to tell you, take home.

Shawn Decker:

But I believe my parents were told that I had anywhere from six months to two years to live.

Femi Oke:

Shawn's family chose to discreetly share his new diagnosis with his school, a disclosure that came with shocking consequences.

Shawn Decker:

My mom told my sixth grade teacher with about two weeks of school left that I tested positive. The first reaction we kind of got from disclosing my status to anybody was me getting kicked out of school for two weeks.

Femi Oke:

Doreen's secret was more closely held and that led to assumptions as friends and relatives tried to fill in the gaps.

Doreen:

My relatives assumed that I was bewitched because it's like I was sick, but there is no prognosis. So for them, they assumed I was bewitched.

Femi Oke:

For Shawn, it wasn't just the teachers or students. Any news could tip the fragile balance of his secret.

Shawn Decker:

I remember the morning that Magic Johnson's announcement was on Channel One. And at first I thought they'll think I'm a little bit cooler, but I remember before the end of the day, like I heard my first Magic Johnson age joke, and I was like, "Oh, God. Magic can't even avoid the AIDS jokes."

Femi Oke:

So young to be experiencing the weight of shame and stigma medications like AZT were available in the United States. But this treatment came with side effects.

Shawn Decker:

I remember being approached by my mom about whether I wanted to take AZT. And I, I remember asking her what that meant, would it mean I was cured? And she said, "No, you might be dealing with some side effects that make you not feel so good, but it could possibly extend your life a little bit." And I just didn't... The gamble of, "Okay, well maybe I'll get another year or two, but it's going to be all focused on treatment."

Femi Oke:

Shawn had the option to take medications, but across Africa it was a different story.

Doreen:

The medication that was there was actually for rich people. I can say that because it was expensive and most of them were shipping it from Europe, America to bring it to Kenya. So if you are a normal person, you will not afford it. There was a feeling of hopelessness for me, even as a child.

Femi Oke:

Today, thanks to advances in treatment and greater global access, both are thriving and doing so openly.

Shawn Decker:

My HIV treatment journey has been interesting. I started on HIV meds in 1999. I was taking probably close to 15 pills, all in all. And over time, the amount of pills and the amount of side effects lessened with each new treatment that I would start.

Doreen:

My message to other young people today living with HIV is it's a tough journey. At least now we have hope. Now we have medication. I always say HIV is a tiny virus, but to giving it so much power. So, by stigmatizing ourselves, we are giving it so much power. By not taking our treatment. So let us remove, take away the power from this very tiny virus and let us our lives beyond our diagnosis.

Femi Oke:

The treatment that keeps Doreen and Shawn alive today is in part thanks to our next guest, Dr. David Home. Named time. Magazine's Person of the Year in 1996 for his critical role in pioneering combination HIV treatment. He's also famously known as Magic Johnson's doctor. As a young scientist. Dr. Ho knew there had to be something better than AZT, the first drug to treat HIV.

Dr. Ho:

The AZT was definitely an antiviral. That was obvious when we test that drug in the laboratory against HIV. And then in the initial study of the act, it did help patients but only briefly and caused a great deal of side effects. It wasn't the life-saving medication that we had hoped for. We also know the mutation rate of HIV is very, very fast. And the only chance we have of controlling the virus in a durable fashion was to use a combination of three or four drugs. And indeed, that's what we launched in 1985 with a protease inhibitor plus AZT plus a third drug. And within a few weeks, we noticed that we were controlling the virus very, very well.

Femi Oke:

The international AIDS Conference of 1996, you had information, it was breaking news. You knew there was a treatment that was working.

Dr. Ho:

In the summer of 1996 in Vancouver at the International AIDS Conference. And we were excited to share the results with the rest of the field. The patients who were attending the conference were very moved by those results. And of course it made a big splash and was well received by the community. From that point on, you could say that was the turning point of antiretroviral therapy.

Femi Oke:

The impact of this combined truck therapy is sometimes known as the Lazarus Syndrome. And you saw that work in front of your very eyes. Will you describe that to us?

Dr. Ho:

Yes. In our initial clinical trial that involves several dozen such patients treated with a combination, many of them were quite ill. Confined to bed, unable to work, but dramatically within three or four weeks of antiretroviral therapy, they will much better and rose from their beds.

Femi Oke:

The theme of that International AIDS Conference in Vancouver in 1996, One World, One Hope, but with this combined drug therapy, there were certain challenges. How would you have access to the therapies? How expensive would the therapies be? What about the developing world? Did you think about that as well?

Dr. Ho:

Well, it's that women from Africa who rose up and said, "What about us?" Certainly made a strong impression in my own mind, having worked on these therapies for the prior two years, we wanted the medications to be available to all who needed that. And we knew at that time, the therapies were extremely expensive and it exceeded $10,000 a year for the American patients. And certainly that's out of the question for many of the patients in Sub-Saharan Africa. And so that call led to efforts in the subsequent years to push the UN and many other donor agencies to begin to deliver antiretroviral combination therapy to Africa in particular.

Femi Oke:

You continue to campaign, to be involved in AIDS communities around the world to speak and to educate the world. And that reminds me of a connection that you had that continues to this day with a very famous basketball player, Magic Johnson,

Dr. Ho:

Well, Magic Johnson found out that he was HIV positive through a blood test that was part of a routine insurance exam. And I was called upon to confirm that diagnosis and then, which we did, and then we went on to develop a relationship. And I started to look after him as his advising physician. I told him to hang on because more and more medications were coming along and therapy research was improving very rapidly. So he really held on until about 1995. And he was one of the first to access combination antiretroviral therapy and benefited from that. He became a poster boy for what therapy could achieve and told people that one could live a normal life while taking these medications. And so he became a symbol of hope.

Femi Oke:

There's a phrase that characterizes your approach to AIDS, which is, "Hit hard, hit early." Makes sense to me, but it was controversial. Why?

Dr. Ho:

Treating early was more controversial. And the controversy from stems from the fact that the drugs had side effects. So you have to strike the right balance between helping the patients and not causing too many adverse reactions. We strongly believe that while you let the virus replicate, it's constantly depleting a very important component in our body's immune system. And to let it go on and on day after day is simply unacceptable to us. And furthermore, every infectious disease we treat, as soon as we diagnose it, why would HIV be different? In fact, nowadays, a person is treated almost immediately upon diagnosis and it's unethical to delay therapy, but it certainly took the field a long time to get to that point.

Femi Oke:

What has been your proudest moment?

Dr. Ho:

Well, I would say it's been great to receive the compliments and the applause when we presented our results in Vancouver in 1996, but it is the quieter thank you's that I receive from total strangers that are even more gratifying. Being on a plane, sitting, reading, and then having the attendant come and say, "Dr. Ho, thank you for your work, it saved my life. That, each time I hear that, I feel proud and extremely gratified.

Femi Oke:

Dr. Ho, this year we have IAS 2021. That's the 11th AIS conference on HIV science and AIDS 2022 is in Canada next year. What breakthroughs are you hoping to hear about?

Dr. Ho:

Well, the remaining challenges in the HIV/AIDS field is obviously to come up with a cure. I want to see more progress on that front. In addition, look at how fast we came up with a vaccine for COVID-19. And yet, despite, nearly 40 years of research, we don't have a vaccine for HIV. And I know my colleagues in the field are working hard on each of those, and my lab included. And I think we could see the ultimate end to this pandemic.

Femi Oke:

Dr. Ho helped create a world in which HIV wasn't a predetermined death sentence today. Millions of people have access to effective treatment, but that wasn't always the case. The hit UK TV show, It's A Sin, showed at IAS 2021, the IAS conference on HIV science takes us back to the era before Dr. Ho's discoveries. Joining us now is a star of the show, Nathaniel hall.

Nathaniel Hall:

Being a part of It's a Sin was just the most incredible experience, particularly someone who's lived with HIV for over 18 years. I thought I knew a lot about the early part of the HIV and AIDS crisis. I think what HIV did in the 1980s and 90s was add fuel to the fire of what was pretty rampant homophobia here in the UK. I can see how damaging that was, because what that meant was for a whole generation of gay kids, they would not see or having any positive talk about the thing that they knew they were, the difference that they had inside. So essentially you lived in a very isolated closet.

Femi Oke:

Daniel was diagnosed with HIV when he was 16, after his first sexual partner.

Nathaniel Hall:

It was like a summer romance. And eventually it came to my first time with him and he pulled out a sex pack, which you can get in bars around Manchester, which include condoms, and lube. And I thought, "Great, don't have to be an awkward conversation. And he just put the condoms to one side and took the lube. And I said, "Hang on a sec. I think we should use a condom." And he just said, "It's fine. I've just been tested, clean bill, sexual health. You don't need to worry." And I just trusted him because I didn't, I wasn't an adult yet. I didn't have the language or the skills to navigate that conversation. We've not talked about that in school, or perhaps for that moment.

Femi Oke:

Nathaniel lived in a loving middle-class home. Yet the internal stigma wouldn't let him share that he was living with HIV, even to his parents.

Nathaniel Hall:

I remember being coming back to my parents' house after being diagnosed and sort of waiting and building the momentum to go through that door and walk into the kitchen and say, "I need you. You're my parents. I've made a mistake. I need your support, need you to make this better." And actually, I felt like I had really, really messed up.

Femi Oke:

That feeling would follow Nathaniel. He kept the secret for years, all the while it ate him up inside.

Nathaniel Hall:

For 15 years, I lived in secret, secrecy and shame with a diagnosis until in 2017 realized it was really impacting my life in a lot of negative ways and decided to come out publicly. It's been a remarkable journey in the last few years to go from that sort of alcohol and drug fueled rock bottom to where I am today.

Femi Oke:

Thanks to advances in HIV treatment, Nathaniel lives a very different life to the characters depicted 40 years ago in It's A Sin. One of the more recent major breakthroughs is U=U, which stands for undetectable equals nontransmissible. It means when a person is living with HIV and on effective treatment, the level of HIV in their blood is so low that it cannot be passed on sexually.

Nathaniel Hall:

U=U has been the biggest revelation for people living with HIV, as far as I'm concerned. I can't even express it in words sometimes how revolutionary it has been.

Femi Oke:

But even today, many people aren't aware of U=U and what it means for sexual health.

Nathaniel Hall:

I've been rejected numerous times when I've told people I'm HIV positive. And actually you put yourself more at risk if you choose to sleep with people who don't tell you their HIV status. And I think that's where U=U again, has really radicalized and changed because we have this piece of science now where you can sort of just plunk down on the table and go, "There you go. That's what we've been saying for years. We're not a danger. You don't need to fear us."

Femi Oke:

Thank you to all our guests. The International AIDS Conference in Vancouver in 1996 celebrated an historic milestone for HIV treatment. 25 years on, we continue to innovate. IAS 2021 presents new research showing how long acting implants and injections will revolutionize HIV treatment as well as prevention, with people no longer having to rely on daily pills. Before I leave you with a final thought, a short message from one of IAS 2021s major industry sponsors.

Speaker 7:

We won't stop until fear becomes hope and there are no new HIV infections.

Speaker 8:

We won't stop fighting stigma and ignorance.

Speaker 9:

Until the right HIV care and support is available to all.

Group:

Because we are ViiV healthcare.

Speaker 11:

Here until HIV and AIDS aren't.

Femi Oke:

Following the science has never been more important throughout the last 40 years. We have seen the benefit of following the science. Yet also, the damage caused by stigma. We must applaud the courage of activists like Shawn, Doreen, and Nathaniel in telling their stories. And in doing so inspire scientists like Dr. Ho to continue to innovate the science of tomorrow.

Femi Oke:

Share your story and join the conversation online with the #HIVunmuted for a chance to win an IAS membership. On our next episode, join us as we continue in the 1990s and examine how and when the law has not always followed the science. This is HIV Unmuted. And like our title says, you can't keep us quiet. Subscribe to the IAS podcast, HIV Unmuted wherever you get your podcasts.