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Alison Stewart: This is All Of It from WNYC. I'm Alison Stewart. Now we're going to talk about a medical industry story that's really quite chilling. It traces the history of a hemophilia treatment called Factor VIII, a blood clotting protein that was approved for use in the 1960s. At the time, it was hailed as a miracle treatment that would allow people who suffered from frequent and sometimes debilitating bleeding to live more normal and healthier lives. That was the promise but for hundreds, it did the opposite of improved quality of life.

Some doses of Factor VIII infected patients with what was then a new sickness that would ultimately be labeled autoimmune deficiency virus or AIDS. British investigative journalist, Cara McGoogan spent years reporting on how this all happened. Let's listen to a little bit of Cara McGoogan's award-winning podcast, Bed of Lies. Here's how some of the people she talks to describe their reactions and the reactions of their friends when they'd found out their medicine had actually given them a new disease.

Speaker 1: We were just numb. We were in a state of shock.

Cara McGoogan: You might try to carry on as if nothing has happened.

Speaker 2: We just didn't speak about it, to be honest.

Speaker 1: There was nothing to say to each other. There was nothing we could do.

Speaker 2: I just used to get on the sofa, pull a duvet over me, and just sit and watch TV.

Speaker 3: You hope that there'll be a treatment. They'll be okay. They're going to be okay.

Cara McGoogan: As time passes, you'll become increasingly terrified about the end of your life worrying when your time will come. It will get harder to carry on as normal.

Speaker 3: You're going to die young anyway. What's the point of school?

Speaker 4: I went off the rails a little bit. Well, quite a lot, to be honest.

Speaker 3: I had to give up work. I had no other option.

Speaker 2: I used to drink a lot, drink to null the pain.

Speaker 4: I know of at least eight or nine people that drank themselves almost to death.

Alison Stewart: Joining me in studio now to explain the story of how the Wonder Treatment Factor VIII came to infect more than 1,000 people in the UK with HIV is journalist Cara McGoogan. Her book is called Blood Farm; the Explosive Big Pharma Scandal that Altered the AIDS Crisis. She's also the host of the documentary podcast, Bed of Lies. Cara, thank you for coming in.

Cara McGoogan: Thank you for having me.

Alison Stewart: This story focuses on this treatment, this hemophilia treatment Factor VIII. The name refers to a missing clotting protein of the same name. Can you explain to our listeners, just so we get a baseline, how Factor VIII is produced and how it would change the life of a hemophiliac?

Cara McGoogan: People with hemophilia, as you said, lack the clotting protein in their blood Factor VIII or rather the clotting protein Factor IX from Willebrands. Those help form clots within the blood. With the deficiency, you need a replacement. Factor VIII was a treatment made out of human plasma. The plasma was pulled-- lots of donations were pulled, and then it was spun round and divided into constituent parts and then they take out the specific clotting protein needed for people with hemophilia. Hemophilia A, it was Factor VIII, and that would then be mixed with saline and infused in order to prevent people with hemophilia from having bleeds and to help them respond when they got a bleed. These bleeds are often internal in the joints, in muscles. It's pulling into a joint and expanding and seizing up in the joint, not necessarily bleeding out from a paper cut.

Alison Stewart: What was it about Factor VIII that made people think it would be superior to other available treatments?

Cara McGoogan: The earlier treatment cryoprecipitate was made out of fresh frozen plasma as well but this contained many of the different constituent parts of plasma. More than just the Factor VIII protein, it also had the Factor IX protein, immunoglobulins, other parts of plasma, and it could contain more impurities but it was made with the donation of one or just a few people. There was a much lower risk in bloodborne viruses.

Alison Stewart: A lot of the story has to do with the relationship between British medicine and American medicine and it's illustrated by two different titles of the book. The US version is Blood Farm, the UK version is The Poison Line. Would you explain how these two different titles speak to the different roles as the US and the UK play in this story?

Cara McGoogan: In America, plasma was being sourced across the country at paid-for plasma centers. Here you can pay for plasma donations. In many other countries around the world, including the UK, it's actually illegal to pay for plasma donations. You have to give plasma and blood on what is called the gift relationship. You're donating it out of altruism rather than for a monetary benefit. Here because there was this rule that you could pay for plasma, there was a nationwide billion-dollar industry collecting plasma.

In the '70s and '80s, a lot of that plasma was sourced in slightly less than desirable places. What we see is prisons run their own plasma centers and often in these prisons such as Louisiana State Penitentiary, Angola which is nicknamed The Farm, prisoners were actually staffing the center. They were collecting plasma. They were putting it in bags and putting it in freezers. They were vetting which of their fellow prisoners could give plasma. That included those who had recently turned yellow or had hepatitis, who had been shooting intravenous drugs, who had been having sex in the bathroom stalls while in the line to donate. That's at The Farm. The blood farm draws us into the starting point, the places where plasma was being collected in America.

Alison Stewart: You actually start the book describing Louisiana State Penitentiary, Angola, sometimes called the Alcatraz of the South. You bring in a lot of what we know is because of two lawyers or a lawyer, the Mulls, right?

Cara McGoogan: Tom and Lorraine Mull.

Alison Stewart: Tom and Lorraine Mull. Tell us a little bit about who they are and their role in your reporting.

Cara McGoogan: Tom and Lorraine Mull were these mom-and-pop shop lawyers down in Louisiana, a married couple and one day another married couple who looked very much like them and had two kids the same age, walked into their shop and said, "Our son Brad is dying from AIDS." Their son Brad had contracted AIDS from his hemophilia medication. Tom and Lorraine were absolutely devastated by this and they wanted to fight.

They put a lot of their own money and business and family life on the line for 10 years to track down what pharmaceutical companies had done in making this product, how they'd taken risks, and ultimately got the biggest worldwide settlement for 124 of their clients. What we see as justice around the world is totally piecemeal. In the UK, we're still waiting for a public inquiry to report 40 years later. Tom and Lorraine in America, they fought to the bitter end and they got a big verdict and then a $100,000 million settlement for their 124 clients. They had more clients than that but they took the national settlement which was $100,000 dollars. There's a stark difference in the prices there.

Alison Stewart: Just so people can hear from first-person accounts, we're going to hear two of your subjects reading aloud from depositions, taking it in one of those lawsuits that you were talking about which described the platelet donation process, what it was like for inmates at Louisiana State Penitentiary, Angola, named after the former slave plantation that used to be there. This is from the podcast, Bed of Lies.

Speaker 5: Have you ever sold your plasma at Angola?

Speaker 6: Yes, I have.

Speaker 5: How do you do that?

Speaker 6: You just write down your name and your number and give it to the inmate who's already a bleeder there.

Cara McGoogan: Bleeders. That's what they called prisoners who donated plasma.

Speaker 6: You go over and they take a little physical, it's a little doctor there. He just asks you if you've had a tattoo within six months. If you've had hepatitis, that's it. Then you're a bleeder.

Cara McGoogan: They only had one examination before their first time donating and it took a matter of minutes.

Speaker 5: If he asks you if you were an IV drug user, could you just lie?

Speaker 6: Sure.

Speaker 5: How many times a week are you allowed to bleed?

Speaker 6: I bled twice a week. You do two bags each bleed. You might have 75 to 100 people in there bleeding.

Cara McGoogan: There's another thing. While they queued up to donate.

Speaker 6: It wasn't nothing to see people in the bathroom having sex before they go on the table to bleed.

Speaker 5: In the plasma center?

Speaker 6: In the bathroom. Yes. It wasn't anything to see. They're having oral sex and anal sex. Then five minutes later they're on the table giving blood.

Alison Stewart: That's from the podcast, Bed of Lies. My guest is investigative reporter Cara, excuse me, McGoogan. I apologize. We are talking about her podcast as well as her book Blood Form about a hemophilia treatment that inadvertently spread HIV and AIDS from the US to the UK. We talked about prison. On the US side of things, aside from prisons, where else was plasma collected?

Cara McGoogan: The plasma centers across the country and outside of America because blood bankers also went South to Latin America. In Nicaragua, there was a center called the House of Vampires where up to 1,000 donors gave plasma each day. A death there connected to the president sparked the Nicaragua Revolution. There were centers in impoverished areas of American cities where you would find people queuing getting the quick buck for their plasma and then spending it on alcohol and intravenous drugs. They had mobile trucks which went around cities and parked up outside nightclubs. In the early years of the AIDS crisis, as this new illness GRID is starting to spread among gay men, there are trucks parked outside nightclubs, and men coming out of clubs are being asked to donate plasma.

Sometimes donating plasma and then going back in and using that money for more drinks. Then we also had plasma centers. They were going to STD clinics and buying recovered plasma. What the pharma companies were doing is they were also using a part of this plasma to make hepatitis B immunoglobulin. That was a treatment to help prevent people from catching hepatitis B and becoming ill with it, but people with hepatitis B were among the most at risk of getting HIV when it emerged because it was also blood-borne. What they were doing was going to people who were most at risk of then contracting HIV, using their plasma partly to make hepatitis B immunoglobulins and then using the rest to make Factor VIII and not treating it for viruses.

Alison: As I mentioned, the subtitle of your book is The Explosive Big Pharma Scandal That Altered the AIDS Crisis. What companies are we talking about at the time?

McGoogan: We had Baxter Healthcare, which still exists in a form. Bayer, which is another big pharmaceutical company. Then Armour, who you might now know more for making hot dogs, and Alpha, which was a subsidiary of a Japanese company, Green Cross.

Alison: Of course, the big question is, how much did they know and when did they know it?

McGoogan: The first signs came in July 1982 when the first three people with hemophilia contracted this illness that looked like GRID, which was affecting gay men. Actually, after those three people with hemophilia contracted it, it was given the new name that we now know it by, AIDS. From that point, the CDC, Dr. Bruce Evatt, Dr. Don Francis, they thought AIDS must be caused by a blood-borne agent, but the pharmaceutical companies didn't want to listen to that. They had a meeting then later that year where Dr. Bruce Evatt of the CDC said, you need to take steps to protect people, but nothing happened. No AIDS warning was put on their products for many months to come. Their plasma collecting practices slowly changed. They started to screen but not quickly enough.

Then they started looking at making a heat-treated product. They all had a version came out by the beginning of 1984 that was clean of viruses, but it wasn't until the summer of 1985 that the pre-cust of the FDA had to step in and say, "Stop selling unheated treatment," because they were still shipping it around the world.

Alison: It's interesting in the podcast you bring up several doctors. You're trying to find a doctor to talk. Some hang up on you. Some say, "I've said all I'm going to say," but a few of the doctors really, really wanted to talk. What did they tell you about at the time when they first realized something was wrong, how they approached it?

McGoogan: It varies from doctor to doctor how they treated this because they could take measures to protect their patients. They could have reverted to cryoprecipitate, the older treatment which was safer. It took longer to administer, was more uncomfortable, but it was made with far less blood donations. They could have warned their patients and given them the choice. They could have also switched. In the UK, there's a big debate over whether they should have stopped using all-American commercial products and just use British-made Factor VIII because we didn't have-- the beginnings of the AIDS crisis were yet to emerge. Doctors made decisions that endangered patients and didn't give patients agency themselves. Now we have doctors who look back with hindsight and regret their actions.

Some say they were injecting patients and the treatment was killing them. They did know about the risks because they knew from those first three patients with hemophilia contracting HIV in July 1982 that this could put their patients in danger, but three years later they're still using the treatment. There's a lot of guilt from doctors, but there are other doctors who maintain to this day little was known about AIDS. It was a growing illness like we've seen with COVID. Scientific knowledge comes slowly and they needed more knowledge before they took a drastic action of stopping treatment. This was a revolutionary treatment and they talk about the balance of risk and each individual doctor has had their own mental calculation of the balance of risk.

Is it more risky to stop treatment and the patient have the debilitating bleeds which could kill them if they were on the brain or is it more risky to potentially infect them with viruses hepatitis C, hepatitis B, and HIV? What we saw back in the 80s is that doctors rarely gave their patients the chance to make that choice.

Alison: Let's listen to another clip from your podcast. This is someone who had been infected with HIV through Factor VIII for his treatments for hemophilia, describing the room in which he and some of his classmates got their diagnosis. This is at a school called the Treloar School, which we'll talk about in a minute. This is from the podcast, Bed of Lies.

Adrian: He went round the room left to right and said, "You have, you haven't, You have, you haven't, you have got HIV." There was a pause. By this point, he was really quite cheerful. You'd never forget these things too, they just stay.

McGoogan: Adrian was one of the you-haves. He had HIV. The boy sat in silence. Then his friend shouted,

Adrian: "How long have we fucking got then?" That's what he said. They proceeded with that we had probably two to three years to live and we'd probably be gone by 18, 20.

McGoogan: How did you feel in that moment?

Adrian: Well, he said HIV is the sun came for the blind. It was really weird. Fully for the blind and I thought that's my last sunrise then.

McGoogan: As they left the doctor's office, there were five more boys waiting outside for their own verdict. Adrian remembers their terrified faces. Then he went outside and one of his friends,

Adrian: Picked up a pot and smashed against the wall of the Hemophilia Centre. "We're dead. We're all fucking dead. You fucking killed us."

Alison: That's from the podcast, Bed of Lies. My guest is Cara McGoogan. The name of her book is Blood Farm: The Explosive Big Pharma Scandal That Altered the AIDS Crisis. The people you were talking about in that clip went to this school. It's spelled T-R-E-L-O-A-R. How do you say it properly?

McGoogan: Treloar.

Alison: Treloar. Thank you. Treloar School in Hampshire, UK. It was a school for kids with health issues. It's not the only place Factor VIII was an important part of treating hemophilia, but somehow this school became emblematic of the problem and the scandal. Can you explain how so?

McGoogan: Hemophilia back then was a condition that required intensive hospital treatment, regular trips to the hospital whenever you had a bleed, weekly checkups, and so Treloar was a school where they built a hemophilia center on site. This, along with Factor VIII, revolutionized these children's lives. It gave them a chance to conduct normal studies and when they had a medical problem, a bleed, or the signs of a bleed, they would just pop to the hemophilia center and then they could go back to class. They also suddenly were surrounded by classmates who had hemophilia too who'd had these unconventional childhoods that they had, laid up on the sofa with ice on their knees, waiting for a bleed to pass, recovering from the aftereffects. It really gave them a chance to live a normal childhood, study, play sports, make friends.

What unfortunately happened was that this was also a captive audience, one of the largest groups of hemophilia patients that were in one place in the world. They were essentially treated as research subjects. The doctors there wanted to push the limits of this new treatment. They started trialing what's called prophylaxis, which was giving patients regular injections of Factor VIII in order to prevent bleeds from happening. They were injecting them weekly when they didn't have a bleed, more often than normal. They were also trialing different types of Factor VIII. Trying the one from Baxter, trying the one from Bayer, and the NHS-made version and seeing which one was more likely to give a patient hepatitis. They knew that there were viral risks associated with this, and they were actually testing that.

What you find at Treloar and other centers around the UK and in America is the pharmaceutical companies were paying doctors to help them with their research, giving them free products, helping invest in building up their center if they use their product, and so saying, "Oh, well, help us test if there's hepatitis in the product and we'll give you free batches of Factor VIII and we'll give a bit of investment for your center." Rather than saying, "There is a risk of viruses, so we're going to stop," they didn't. That meant viruses were rife in Treloar and a significant majority of the pupils then contracted hepatitis C and HIV, and only a small number of them survive today.

Alison: In our last moment, how much of this scandal boils down to the UK health system trusting US oversight of the product that they were sending over?

McGoogan: Yes, there's a huge part of that in the UK. In the UK, the reason that this book has come out now, The Poison Line in the UK and Blood Farm here, is because there's an inquiry happening in the UK, which is due to report in March next year. That will finally be lifting the lid on what happened. How 1,250 people in the UK were infected with HIV from their medical treatment, and some 5,000 hepatitis C, many of whom have died. We have not looked at the pharma companies in the UK, we're looking at the government's role in allowing this product to be imported and then continuing to trust the US healthcare system.

In America where the product was made, and the pharmaceutical companies did have to pay out some compensation to victims, they've never had any repercussions in the UK. There's been a level of impunity there. It's not just the UK. We're now having this inquiry, there could now be some compensation, hopefully, but around the world, there were many, many more countries that this product was sent and there were no justice from the pharma companies.

Alison Stewart: The name of the book is Blood Farm; The Explosive Big Pharma Scandal That Altered the AIDS Crisis. The podcast is called Bed of Lies. Cara McGoogan is the author of the book and the host and the reporter on the podcast. Thank you so much for sharing your reporting with us. We really appreciate it.

Cara McGoogan: Thank you so much.

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