Carol Glenn, a former nurse, remembers when AIDS ravaged Seattle.
“We began to have people literally walking into the clinic and dropping dead,” said Glenn, who worked at Pike Market Clinic at the time. “Or people with these really strange growths on their face or horrible pneumonias, and nobody knew what they were.”
Back then, HIV was a death sentence. AZT, the first drug approved to treat the disease, came on the market in 1987; it would be years before HIV/AIDS treatments truly started saving lives.
“People were dying left and right at that point and their friends or family would come with a box of stuff and say, ‘I don’t want to throw this away; what’ll I do with it?’” Glenn said.
Their questions inspired a plan that would buy time for people with HIV – but would also ultimately cost Glenn the job she loved.
She decided that she would collect those leftover drugs and send them overseas where AIDS treatments were expensive and hard to find. It wasn't legal to give away drugs prescribed to other patients, but Glenn believed it was immoral to throw out unused medicine when others needed it desperately.
She got the idea when she was a nurse at Harborview Madison Clinic, watching a young medical student in the clinic packing for a visit home to Peru.
“He had his suitcase on a weight scale, and he was taking out his clothes and putting in Bactrim and fluconazole, and aspirin, things like that,” Glenn said.
Every time he flew home, Jorge Sanchez brought a suitcase filled with medicines.
As she watched him, Glenn wondered if her patients’ extra medications could help.
Sanchez, now an HIV researcher in Lima, became one of the first people to bring Glenn’s extra AIDS drugs to patients in other countries. He didn’t think of what they did as drug smuggling.
“I saw her only as a nurse, always trying to help people, always caring for people, with a smile all the time,” Sanchez said. “Can you imagine how long her help made a difference in this country?”
The practice was called “bringing Carol her lunch.”
Patients would put their drugs in a brown paper bag with Glenn’s name on it. They would take the bag to the front desk and say, “I brought Carol her lunch.”
Word spread fast. Carol’s lunch became an open secret.
“Everybody knew, but they didn’t know,” Glenn said. And if they knew, they turned a blind eye, because what she was doing was illegal.
Joe Martin, a social worker when the AIDS crisis hit, first met Glenn at the Comet Tavern on Capitol Hill. When they started working together he recognized her. “You’re the cute blonde who sat at the bar,” he told her.
He described Glenn as a crackerjack nurse with great sense of humor – but not to be messed with.
“She was a tough woman who wasn’t somebody you were just going to push around,” Martin said.
Soon, Glenn was sending drugs all over the world, primarily to eastern Africa – Ethiopia, Kenya, Rwanda, Sudan, Eritrea.
“You can give somebody three months’ worth of meds and they might have an extended life of five or six more months,” she said.
The drugs weren’t saving lives – there was no cure for AIDS – but they added months to a person’s life to get their affairs in order. Glenn heard of a Somali woman who used that time to find a home for her children.
Glenn sent medicine abroad for years – continuing even after U.S. government funding made AIDS drugs more widely available in the developing world.
Glenn knew she was breaking the rules. The state had strict guidelines on dispensing medication.
“There has to be a medical regimen or an order from a prescriber for a nurse to administer medications,” said Paula Meyer, the executive director of the Nursing Care Quality Assurance Commission in Washington state. “Those were absent in these cases.”
Glenn, who had gone to work for the Harborview Madison Clinic, said she never prescribed medications. Rather, she gave leftover drugs to medical professionals or to patients who had a prescription.
She believed she was following the spirit of the law, if not the letter.
By 2009, Harborview knew what she was doing. Her supervisor told her to stop.
Instead, she changed her tactics slightly. She tried to operate offsite, thinking she was safe if she stayed off of hospital property.
But then her world fell apart.
World AIDS Day, 2009. Glenn sits in a packed hall to hear a doctor speak about his work with AIDS patients in Kenya.
The doctor points to a photo of a patient and her daughter. Glenn recalls him telling the audience, “And sitting in front of her are the medications that she‘s going to take, provided by our very own Carol Glenn.”
People in the audience turn to her and smile, giving her thumbs up. Glenn doesn’t smile back.
“I shrank about eight inches into my seat and I thought, ‘Oh my God. You know, it’s illegal, what we’re doing,’” Glenn said. “‘And you just announced it to 700 people! I can’t believe you did that!’”
In praising Glenn, she said the doctor blew her secret wide open. A year later, she lost her job, ending a 40-year nursing career.
Harborview declined to comment for this story.
As she stood outside Madison Clinic on her last day, Glenn realized she wouldn’t be able to get meds to a patient. “He’s going to die,” she thought.
Her operation was shut down, but unbeknownst to her, she wasn’t the only person in Seattle sending drugs to patients overseas.
On a recent summer afternoon, Rita Zawaideh stood in the middle of her office in north Seattle, a travel agency that specializes in trips to the Middle East. Her mantel was lined with awards and photos of herself, including one of her beaming next to first lady Michelle Obama. A tiny terrier named Omar jumped excitedly at her feet.
Every available surface was piled with donated clothing and boxes of medicines.
“Here we have antifungal cream that we got, a huge box in that we can definitely use for women, and big bottles of Metformin,” she said, referring to a medication for diabetes.
Zawaideh was preparing for a medical mission to Jordan to help Syrian refugees.
“This is about $5,000 worth of medicines right here that we’ve just gotten in,” she said.
She receives these drugs as donations. Some come from doctors, and others from people who have leftover drugs at home.
“Most people don’t know what to do with it,” Zawaideh said. “I said, ‘I will take it.’”
She knows it’s not legal, but she does it anyway, often asking for donations of medicines and medical supplies when she speaks about her work to groups such as the Rotary Club.
“There’s such a waste in this country with medicines,” she said. “It’s just unbelievable.”
After she collects the donated medication here in Seattle, there’s the challenge of getting it in to Jordan.
Zawaideh said she waits until she’s one of the last people going through customs. The agents are tired by then and ready to go home. Then she hires a porter to carry her bags.
She chats the porter up, asks what town he’s from, trying to make some kind of connection. And then she offers $100 to get through customs without getting stopped.
“They know the people. They just waltz it right through,” she said.
Zawaideh works with a Seattle doctor who said she tried to supply Zawaideh's operation with drugs through legal channels but ran into obstacles.
The doctor, a friend of Zawaideh’s, requested anonymity to protect her job – and Zawaideh’s supply of medicine.
“I would love to be able to just openly say this,” the doctor said, “because to me this is dumb, where you’re letting red tape override common sense and ethics.”
Even as a doctor, she couldn’t just buy the drugs. She would have had to be registered as a distributor and spend at least $50,000 every month.
The doctor was ready to give up. But then she talked to Zawaideh about what it was like to work in the refugee camps.
“She’s like, ‘Oh, you know it’s like Civil War surgery,’’’ the doctor said. “They don’t have any anesthetics for anything, not even to stitch up wounds. And I said, ‘What? You don’t have what? You don’t have anesthetics?’ Well, we ditch those after 28 days. Huh. I wonder what happens to those?’”
The doctor learned the meds go into a big bin in the clinic’s basement.
So she went digging, finding a variety of medications. These were partially used drugs the hospital disposed of a month after opening to prevent infection.
Quietly, the doctor started passing the medications on to Zawaideh.
“My other colleagues know it, but it’s one of these things that’s sort of, ‘Keep it quiet,’” she said.
Everything in those bins is supposed to be shipped off for incineration.
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Many say there’s good reason those unused drugs are destroyed, because it takes them out of circulation so they can’t be sold, put in the wrong hands or get into our water supply.
There is also a heightened risk of infection with opened or partially used drugs.
“Everybody in the world deserves high quality health care,” said Dr. Wendy Johnson, who has worked in Mozambique, Haiti and other parts of the developing world. Johnson teaches at the University of Washington.
She said that drug recycling, as it's called by proponents, can be a form of dumping our waste on the developing world.
“Sometimes they’re useful and frankly sometimes they’re not useful,” she said of items donated in developing countries.
Johnson was also concerned that small-scale operations take time and energy away from the systemic change the developing world really needs.
She said West Africa might have been better prepared for Ebola if it weren’t for decades of Band-Aid approaches to health care.
“The more you set up those parallel systems, the more you really undermine the government system,” she said.
But it can be hard to separate policy from the personal, as Berhane Makonnen, a Seattle social worker, knows firsthand.
Much of her family lives in Ethiopia, where she was born. In the mid-2000s, she learned that her brother in Addis Ababa had been diagnosed with AIDS.
They sent him home with a prescription for expensive medications: $6,000 a month, or $72,000 a year. The family didn’t have the money.
“He was wasting, he was, like, skinny,” Makonnen said. “He couldn’t even eat, he couldn’t shave, he couldn’t do anything.”
Makonnen started asking around at work – some of her social worker colleagues worked with AIDS patients at Harborview.
“One of my coworkers said, ‘You know, why don’t you talk to Carol Glenn?’ And I said, ‘Who is she?’”
Makonnen went to see Glenn and told her about her brother.
“And she said, ‘OK, does he have prescription?’ And I said, ‘Yeah.’ It was just like that. And I couldn’t believe it. It was like a dream, a dream come true.”
Glenn helped Makonnen send medication to her brother for about four years. He is still alive.
These days Glenn spends her days gardening in her wild backyard in Shoreline. She has a pack of Chihuahuas she calls The Gang of Four and paints her nails in different colors – a perk of no longer working as a nurse.
The past few years have been hard for her. The state investigated her operation, but ultimately decided not to pursue allegations against her, because she was no longer a practicing nurse.
While under investigation, her nursing license expired. It’s doubtful she could get it back.
But perhaps most painful is that she is cut off from her patients and community.
Glenn finds ways to connect with former patients and coworkers. This year she attended PrideFest in Seattle, which had the feel of a big family reunion. It was the second time she attended since losing her job, because it had been too painful to go before.
“I get to reconnect with the community I’ve lost,” Glenn said. “When I was an HIV nurse and I worked at Harborview, I was a real part of the community.”
At Pride, Glenn bumped into former patients who were delighted to see her. But not everyone rushed to embrace her.
“I’ve smiled at a few people and they recognize me and they look away,” Glenn said as she walked through the crowd. “It’s kind of like being in a big AA group.”
Looking back, Glenn said her one regret is not standing up in that crowded audience on World AIDS Day five years ago and proudly saying she was part of a network of selfless families and doctors.
But she doesn’t regret what she did.
“The first thing in the Hippocratic Oath is first, 'Do no harm,'” Glenn said. “If you have the ability to make a difference or save someone’s life, and you withhold that medication, to me that’s doing harm.”
Jessica Partnow is a cofounder of The Seattle Globalist. Funding for this series comes from the KUOW Program Venture Fund. Supporters include Paul and Laurie Ahearn.