Kevin grew up in a Roman Catholic family. He spent time as an altar boy and often listened to priests who railed that sex was for procreation only. He was eighteen when he moved in with me, and the missionary position was his only position.
My parents cooled down and I visited them for Christmas. In January they came to see my apartment. Kevin answered the door. My mother’s face paled and my father’s grew stern. They left without speaking to me. To my surprise, within weeks they were planning a wedding. Kevin and I were relieved. A priest in my Catholic high school had recommended the rhythm method of birth control. Kevin and I had practiced it, but it didn’t work. I had always wanted to be a mom, so I was happy.
Kevin—at first—fulfilled my parents’ key requirement for a husband: he had an income. His band, the Inner Sanctum, was appearing in the musical The Golden Screw at the Provincetown Playhouse in Greenwich Village and getting union rates as actors. We got married within a month at the famed celebrity hangout Sardi’s and had a write-up in Variety. Around that time, I hit the iron ceiling at the steel company. Only men could be promoted to the sales desk. Thinking The Golden Screw was truly golden, I quit my job. But the off-Broadway musical closed a week after the wedding. Kevin was now an unemployed rock musician with a pregnant wife. We could barely afford the $87 a month rent on our East Village bachelor suite or the $15 a week it took to buy groceries. Kevin said he would sell his blood and contended that I should become a paid donor too.
“I can’t do that,” I said, patting my soon-to-grow tummy. I was seventeen and pregnant. I was relieved to have an excuse.
IN THE 1960s in New York City, people who sold a pint of their blood would receive between $5 and $200, depending on blood type. Kevin discovered he could get $50. Soon, though, he found a job as a shipping clerk with Sun and Health magazine. He spent his work days wrapping and mailing magazines. He brought stacks of them home, where we gawked together at photos of nudists playing volleyball and basking on the sand, wearing nothing but sun hats and sandals. Kevin also began bringing home a paycheck and didn’t have to get his blood siphoned for money.
It might have been good if he had, though. As far as I know he didn’t have hepatitis, and his blood might have saved someone from getting it. Dr. Harvey Alter, from the National Institutes of Health in the United States, explained in a BioCentury TV webcast in 2014 that in those days people who received blood from volunteers rather than paid donors had only a 7 percent chance of contracting hepatitis. Even a 7 percent chance of getting hep would be scary, but it was a lot better at the time than the 30 percent rate for all blood transfusions.
While Kevin worked at Sun and Health, I found a job as a page at MGM Records, where I traipsed from room to room delivering documents. I remember watching Petula Clark stroll down a hallway and seeing Frank Zappa and other kooky rock stars cavort in the employee cafeteria. I loved the job, but in those days, women could be fired for being pregnant. It was the time of loose-fitting sack dresses, so I took to wearing extreme examples of the fashion. Nonetheless, co-workers began to stare at me.
I told Kevin I’d have to quit my job. His job hardly paid our rent, and he again suggested he’d donate blood. Just in time, his agent got the Inner Sanctum a gig opening for the Velvet Underground. Once again there would be no blood selling.
A lot of other people were selling their blood, however. There were countless thousands of paid donors in the sixties, many of them prisoners and those who needed cash to support drug habits. Their blood would kill many future transfusion recipients, whose livers would fail because the donors’ blood carried hepatitis C.
I gave birth to Della two days before my eighteenth birthday. Six weeks later, my doctor suggested I go on birth control pills. That was the first time I had heard about them. I went to the Planned Parenthood clinic and fainted while the nurse was drawing blood.
CHAPTER 3
TAINTED TOOLS
DR. RADEV’S VOICE sounded fuzzy. I stared at the vinyl surface of the examining table. I felt as if I had been swept into the Phantom Zone—the alternate dimension in Superman comics where outlaws from Krypton are banished and serve their sentences as insubstantial beings. They can observe our universe but are invisible to anyone in it. Drawings of the Phantom Zone often depict its inmates howling for mercy with their eyes bulging in fear. As the diagnosis shrouded my consciousness, I must have looked like the most tortured criminal from Krypton.
“What?” I asked. “I thought I only had antibodies.”
Dr. Radev said when someone contracts hepatitis C, the immune system produces antibodies that specifically attack the virus. The blood continues to make them, regardless of whether the person kicks the disease. “I’ll send you to an excellent specialist,” she said. “He does clinical trials, and he knows all about the latest treatments. There are some new, very effective drugs being developed.”
“Oh, good,” I mumbled.
“The new treatments can be very expensive,” she said.
“Expensive” made me think the drugs might cost $10,000. I soon learned that the newest treatment cost well over $100,000—one thousand percent of my guesstimate (that was in 2014). That would kill my travel budget for fifteen years. I was sure my extended medical plan covered prescription drugs, but I would soon be leaving my job and the plan. It was too late to take back my resignation. I’d have to move quickly toward whatever treatment I needed. “When can I see the specialist?” was my number one question.
Dr. Radev said she would send him a note explaining that I needed quick treatment. If my insurance wouldn’t cover it, she said, I might be able to get into a clinical trial.
I had recently read the novel The Normals by David Gilbert. In it, an unemployed recent Harvard grad signs up for a paid drug trial. He lives for many weeks at a drug-company campus. The book describes a prison-like setting with oddball participants, uncaring nurses, and appalling side effects. The plot was meant to be funny, but it scared the bejesus out of me. Why would I want to get into a clinical trial? I could wind up with a placebo, I thought, and never get rid of my disease. I’d later learn that placebos were seldom involved in hep C drug studies. Instead, the trials tend to compare different treatments in terms of cure rates and side effects. But in Dr. Radev’s office the suggestion of a clinical trial made me squirm. I didn’t even think of asking the specialist’s name.
“He will need to know your genotype first,” Dr. Radev said.
The genotype test is a blood test. I winced at the thought of it, but I was afraid to waste a second while the virus was building demon roads through my liver. I raced out of the clinic and ran across the parking lot to the lab.
In the two weeks between the time I heard I had hep and the time I learned my genotype, I talked with my closest family about my illness. My husband, my two daughters, and my two sons-in-law were ultra-nice and ultra-concerned. My grandchildren, a preteen girl and a teenage boy, heard about the hep as they listened to family conversations, and they were ultra-nice too. Everyone got tested for hepatitis C. Despite family habits that included occasional toothbrush sharing with my husband, I was the only one infected.
Sharing household items that come in contact with hep-tainted blood is on the list of possible means of transmission. In a study published in 2006, a team of eight researchers from the University of Regensburg in Germany found that twelve out of thirty patients who had hep showed small amounts of HCV-RNA in their toothbrush-rinsing water. The study concluded that there is a “theoretical risk of infection by sharing these objects.”1 Another study, from Spain, published in the journal Oral Diseases, noted that specific receptors for the virus have not been found in the mouth and HCV particles in saliva are not very infectious. The German team summed it up:
The mere finding of HCV-RNA on the surface of contaminated tools does not prove potential transmission of the virus by these tools, of course, and the low infection risk usually published for household contacts of hepatitis C patients provides good evidence against a significant role of transmission