'Roz and Ray': An HIV tragedy with lessons for today

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'Roz and Ray': An HIV tragedy with lessons for today

Seattle Repertory drama, panel explore fallout from an early AIDS crisis in hemophiliacs

Nov. 3, 2016
Ellen McLaughlin and Teagle F. Bougere in Roz and Ray

Ellen McLaughlin plays Dr. Roz Kagan and Teagle F. Bougere plays Ray Leon, the devoted father of two young boys with hemophilia, in the Seattle Repertory Theatre's medical drama, 'Roz and Ray.'

Photo courtesy of Alabastro Photography via Seattle Repertory Theatre

Seattle Repertory Theatre’s world premiere of “Roz and Ray” is both a look back at an almost-forgotten chapter in the history of the HIV/AIDS epidemic and an exploration of medical decision-making and ethics that is still timely today.

The one-act, two-actor play, which runs through Nov. 13, opens with Dr. Roz Kagan (Ellen McLaughlin), a specialist in in blood cancers and bleeding disorders at a children’s hospital in San Diego, donning a clown nose as she meets the unseen twin sons of Ray Leon (Teagle F. Bougere).  It is 1976, and Ray’s 7-year-old boys have hemophilia, a rare genetic disorder that impairs the blood’s clotting ability. Roz shows them how to inject clotting factor, a then-new, self-administered blood product that, taken regularly, for the first time allowed people with hemophilia to work and live normal lives.

“We’re done with the dark ages,” she tells Ray confidently, meaning the days of painful internal bleeds, emergency blood transfusions and death by age 30 were over.

The play immediately shifts to 1991, with Ray holding a protest sign and shouting, “Dr. Roz Kagan killed my son.”

What no one knew in 1976 was that a new dark age was coming: HIV — a virus no one had even heard of — would infect the blood supply. And because the miracle-working clotting factor was a concentrated powder made from the pooled blood of tens of thousands of donors, approximately half of the 20,000 hemophiliacs in the United States would become infected with HIV before 1985, when the first HIV test for both people and the blood supply was developed.

The agonizing question that the play explores is: What did Roz know and when did she know it? Should she have stopped Mikey and Ray-Ray from using clotting factor as soon as she read about the first hemophiliac death in 1982, a year after the first AIDS deaths were reported in gay men? Or would it already have been too late by the time researchers understood that a virus caused the mysterious new disease and that it could be spread by contaminated blood?

The answers are far from black and white, according to a panel of scientist-physicians and activists from the Seattle Cancer Care Alliance, Fred Hutchinson Cancer Research Center and the Bleeding Disorder Foundation of Washington that Seattle Rep invited to discuss the play after Wednesday’s matinee performance.

“We make decisions based on what we think is the best data we have,” said Dr. Barbara Konkle, an SCCA hematologist-oncologist, University of Washington professor and associate director  of the Washington Center for Bleeding Disorders at Bloodworks Northwest. “And sometimes we don’t make the best decisions.”

The real Ray-Rays and Mikeys

For those who remember this chapter of history, the names most associated with hemophilia and HIV are Ryan White and the three Ray brothers. They — and the larger story about AIDS stigma — made the news for an infuriating and heartbreaking reason: All were barred from school because of fear of HIV. The Rays were even burned out of their home.

Ryan White of Kokomo, Indiana, was one of the first children to be diagnosed with AIDS, in December 1984 at age 14. When his middle school barred his attendance, his family moved to another Indiana town, Cicero. Celebrities including Sir Elton John and Elizabeth Taylor took up his cause. But possibly his most important ally was a young girl named Jill Stuart, the student council president at his new school. She paved the way for his acceptance by inviting medical experts to come talk to the students about HIV/AIDS. The kids in turn educated their parents.

Originally told he had six months to live, Ryan survived until 1990, dying one month before his high school graduation. That same year, Congress passed the Ryan White Comprehensive AIDS Resources Emergency, or CARE, Act, the country’s largest HIV/AIDS-specific federal grant program. It has been extended ever since to help people with HIV get treatment.

Three brothers — Ricky, Robert and Randy Ray — were born with hemophilia and found to be infected with HIV in 1986 at ages 7, 8 and 9. As with Ryan White, their school in Arcadia, Florida, barred them from attending after learning of their diagnoses. The family moved to Alabama, but were barred from school there too. They returned to Arcadia and challenged the ban in court. A week after the court ruled in their favor, their house was gutted in a mysterious fire. The family moved again. Ricky and Robert died of complications of AIDS. Randy survives.

“Roz and Ray” addresses the stigma against people with HIV/AIDS only indirectly. Discrimination against Ray and his boys was not part of the plot. But Ray makes the point that children with HIV eventually were seen as “innocent” victims compared to gay men, for whom AIDS was sometimes described as God’s punishment for their sins.

At one point, he rails against society “blaming faggots” rather than blaming the for-profit plasma-products industry and others for understating the risks and not responding quickly enough.  

“There are no natural disasters,” Ray says in the play. “There are evil, negligence and profit.”

Righteous rage

Ray’s righteous anger struck a particular chord with Stephanie Simpson, the executive director of the Bleeding Disorder Foundation of Washington and a member of the post-matinee panel.

“My first response was thank you for sharing this story,” she said. “It did a very good job of capturing the patient’s frustration and anger. It was a gift to have it shared in such a professional manner.”

At the same time, she also praised the portrayal of Roz as a caring, immensely dedicated physician. That, too, she said, was true to life.

“Virtually [every hemophiliac] has a story about their physician dropping everything and rushing to get to the ER to care for them because no one else knows how,” she said.

Playwright Karen Hartman, a senior artist in residence at the University of Washington, has seen both the compassion and the rage firsthand. Her father was a doctor at Children’s Hospital in San Diego from the early 1970s until the early 1990s. He treated children with hemophilia.

“Like Roz, my father had the miserable luck to practice a healing art contingent on blood products during the years when HIV entered the blood supply,” she said in a conversation with Seattle Rep literary director and dramaturg Kristin Leahey, published in the program notes. “All of his hemophiliac patients tested positive and most of them died.” Dr. Gary Hartman stopped practicing medicine in his late 40s and died at age 60 in 2002, his daughter said.

“We always have to be careful when we look back and say, ‘It should have been obvious.’ It’s harder when you’re there,” said Konkle, who began her hematology practice in 1984, the year HIV was identified as the virus that causes AIDS. “But it reminds us that thinking ‘I’m right, and everybody should do what I do,’ gets us into trouble.”

Dr. Jim Kublin, HVTN executive director

Fred Hutch's Dr. Jim Kublin, executive director, HIV Vaccine Trials Network

Photo by Robert Hood / Fred Hutch News Service

Physician-scientist Dr. Jim Kublin, executive director of the Fred Hutch-based HIV Vaccine Trials Network,  noted the gut-wrenching choice Roz faced between withdrawing the only treatment that enabled the twins to at long last live a normal life or continuing to give it even though she suspected — but had not yet confirmed — it could instead kill them.

He recounted a similar awful decision he once had to make. Having trained in New York City in the 1980s, Kublin had witnessed the early devastation of HIV/AIDS, then saw patients brought back from the brink of death by the cocktails of antiretroviral drugs introduced in 1996.

But the miracle drugs were not yet available in sub-Saharan Africa when he went there in 1998 to run a research program.

Fellow physician friends would send him shipments of expired but still usable medications from the U.S., but there wasn’t nearly enough to meet the need.

Unlike Roz, the decisions he faced had “less to do with what treatment to provide than who to provide it to,” Kublin said. “It was a ‘Sophie’s choice’ situation.”

Advances, and lessons

Today, as a result of the impact of HIV on the hemophiliac population, not only is the blood supply screened, but clotting factor products are made synthetically in laboratories without using donated plasma. There has not been a case of HIV transmitted to a person with hemophilia via clotting products since 1985.

Additionally, there have been “immense benefits to other outbreaks of novel and emerging infections” such as Zika and Ebola because of lessons learned from the early days of HIV, said Kublin.

And the lessons continue in a new era as hematologists and oncologists look at gene therapies and immunotherapies for cancer and other diseases.

“We all want to go and do something great and new,” said Konkle. “But you have to be sure you help patients understand the risks of new drugs. Unfortunately, we still have episodes in new drug treatment that continue to give us pause.”

Even the improvements to the safety of the blood supply can’t be taken for granted, she cautioned, adding, “We’ve learned to never be complacent.”

Join the discussion of  "Roz and Ray" on our Facebook page.

Mary Engel is a staff writer at Fred Hutch. Previously, she covered medicine and health policy for newspapers including the Los Angeles Times, where she wrote the editorials for a series that won a Public Service Pulitzer for health care reporting. She also was a fellow at the year-long MIT Knight Science Journalism program. Reach her at mengel@fredhutch.org or follow her on Twitter, @Engel140.

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