From the 1950s to the 1980s, Egypt carried out a program to vaccinate people against schistosomiasis, also known as bilharzia and commonly called “snail fever.” The disease is spread by parasitic flatworms that live in freshwater snails that burrow into the skin of swimmers. The flatworms enter the person’s blood vessels and lay eggs that can attach to body tissues, usually in veins that drain the intestines or the urinary tract. About 240 million people worldwide suffer from snail fever. Each year more than 200,000 people die from the disease. Egypt’s vaccination campaign used contaminated needles and syringes, and hepatitis C spread throughout the populace. As a result, at least 10 percent of Egyptians aged fifteen to fifty-nine became infected with hepatitis C.3
Vietnam is also high on the World Health Organization’s hepatitis C crisis list because of faulty medical practices. Jenny Heathcote, winner of the 2015 University Health Network Global Impact Award for her work in hepatology, told medical students that in Vietnam “there are so many outbreaks, the health system doesn’t bother screening for the virus.”4
Western nations have spread the virus through contaminated medical equipment too. The Centers for Disease Control and Prevention in the United States reported that between 2008 and 2015, ninety-six patients were infected with hepatitis C at hemodialysis clinics in eighteen separate outbreaks. In Canada, Dr. Gary Garber, chief of infection prevention and control for Public Health Ontario, told me he had noticed a disturbing trend. In several colonoscopy clinics, patients had contracted hepatitis C. When a new case of hep C arises in someone who has no risk factors, the agency goes through the patient’s medical history. “An investigator probably said, ‘Oh isn’t that interesting? The person had a colonoscopy. Two patients before them had hepatitis C,’” Garber said to me on the phone.5
In a specific 2014 case, Waterloo Region Public Health investigated a case of hep C in a patient who had no risk factors other than a visit to a colonoscopy clinic the day before Christmas. The agency then found another patient with hep C who went through the same procedure on the same day at the same clinic. The investigation turned up another three infected patients who had visited the Tri-City Colonoscopy Clinic on Christmas Eve. The genetic makeup of the virus in all five cases was too similar to be a coincidence. Eight other patients treated that day were virus free. So were the clinic’s staff members. No specific means of transmission was found in the clinic. The health agency worked with the clinic to improve its techniques, and the clinic stayed open.6
This was a relatively small medical outbreak compared with one that happened in Nebraska. In 2000 and 2001, ninety-nine cancer patients at a chemotherapy clinic at the Fremont Area Medical Center came down with an odd strain of hepatitis C. The oncologist who had treated them blamed the outbreak on patients’ previous behaviors. But all of the patients tested with the same genotype, 3a, a rare genotype in the United States, suggesting a common means of transmission. Investigators discovered that a nurse in the clinic had reused bags of saline (apparently, to save money). Hep-tainted blood passed from patient to patient through the saline used to flush their chemotherapy ports. Dr. Tahir Javed, who ran the clinic, knew of the practices yet allowed them to go on. During the investigation, Javed fled to his native country, Pakistan, where he was subsequently appointed health minister. Later he surrendered his medical license for Nebraska.
According to Evelyn V. McKnight, one of the ninety-nine patients, there was a cover-up. The hospital—where McKnight’s husband practiced medicine—tried to quash any mention of the hep-tainted medical bags, but ultimately the courts sided with McKnight. In 2014 she and lawyer Travis T. Bennington coauthored The Never Event, which reported that sixteen of the ninety-nine patients—about one in six—progressed to advanced liver disease.
Those odds scared me. Granted, the unfortunate sixteen in Nebraska had suffered from compromised immune systems because of their cancer therapy. But McKnight compiled her statistics after less than fifteen years. The long-term odds of cirrhosis for anyone with hepatitis C are worse. Of the 80 percent of infected people who develop the chronic form of the illness, 20 percent develop cirrhosis after twenty years. By thirty years it’s 41 percent. After that, according to renowned hep C researcher Jordan Feld, it’s likely to go up to 50 to 60 percent. Each year, 1 to 4 percent of people with cirrhosis are diagnosed with liver cancer. That was my big fear. Was I on the way to a cure or something else? I didn’t yet know.
1968–1969
HIPPIE
IN THE FALL of 1968, I hooked up with Peter, who had attended the same high school as I had. He had been popular at Bayside High, while I, except for my camaraderie with groupie friends—mostly from other schools—had been a quiet, studious girl who kept to herself. I would sit in the park across the street from school and pretend to read a book, sneaking looks at the cool kids who lounged against the chain-link fence that surrounded the basketball court. Peter always seemed to be the center of attention. I noticed his broad shoulders, his thick black hair (which began to recede a few years later), and the confident grin on his face. He had thin eyebrows for a boy and a bronze, wide-cheeked face he had inherited from his Indigenous grandmother. He was brawny but not what I’d call cute—my key requirement for boyfriends back then. In fact, were it not for Peter’s bravado and popularity, I never would have hooked up with him a few years later. And I probably would not have acquired hepatitis. But I wouldn’t have had my daughter Jessica, which would have been a giant shame.
During the two years after I graduated, I married a rock musician, had a baby, held several office jobs, painted murals, and lived in Woodstock for a summer, performing in a comedy Western theater troupe. Peter had married a woman and left her with a daughter who had been born with cerebral palsy. He joined the army. After basic training he heard he’d be going to Vietnam, so he deserted.
Around the time he left the army, I left my husband. Kevin had quit his job at the nudist magazine and chosen to stay home in our East Village railroad flat, playing guitar while I worked at an office job. I had to leave Della with a babysitter because he refused to change diapers. When I arrived home each day, Kevin expected me to do all of the housework—or else he would whine or start a fight. He insisted that I darn his socks like his mother had. He would stare at a blank wall for an hour each day, chanting oṃ maṃi padme hūṃ. I asked him why he was chanting.
“I need a new guitar,” he said as he backed away from the wall. “If I chant, the universe will give me a Stratocaster.” I reasoned I had signed up for one child but not for two, so one day while Kevin was out practicing with his band, I left a good-bye note, scooped up my daughter, and took the Long Island Rail Road to my parents’ home in Queens.
Within days I met—or re-met—Peter. I was talking with my friend Diane at a little triangular park near the tracks when Peter arrived with some hippie men. He said hi to Diane, and she introduced us. Peter didn’t remember me from high school. I didn’t mention my fantasies about him. He asked where I lived, and I strategically said, “The East Village,” which was considered very cool. He motioned toward one of the playground swings. “Give it a try,” he said. I hopped onto the child-height seat and raised my legs to avoid the ground. Peter pushed me. I knew right off that he liked me. I flew high, secretly proud of the attention I was getting from the popular boy of my high school years.
Soon Peter and I moved in together, and soon after that we left New York City to live in the U.S. Virgin Islands. We believed the islands were so remote that the army would never find him.
The Virgin Islands are part of the Lesser Antilles archipelago, which comprises many islands and island clusters. Some are sovereign nations and others are governed separately under the dominions of France, the UK, the Netherlands, Venezuela, and the United States. We chose the U.S. territory because we wouldn’t need passports to enter. Peter, our friends Ryan and Harry, toddler Della, and I flew into idyllic St. Thomas just after New Year’s in 1969. We rented a one-bedroom suite for all five of us and slept on air mattresses on the floor. At first I got a job as a secretary. Then I realized Peter’s and Ryan’s