Last December, my dog and I walked into my apartment just as my doctor was leaving a message on the answering machine. I heard him say, "Your insurance said—"
Sick with worry, I dropped Buddy's leash and dove for the phone. My throat was dry. Too scared to breathe, I stammered, "Yes, yes. I'm here," and braced for bad news. But my doc said, "They will cover it." My eyebrows arched up, then my shoulders loosened, and I gulped in air.
I am a native New Yorker from a white-collar family. Despite my access to life's advantages, I became a drug addict. As a teenager, I would leave my suburban home to spend weekends with street junkies at St. Mark's Place. There, in the East Village of Manhattan, I shot both heroin and cocaine.
Surprisingly, I made it through college, rented a Greenwich Village apartment, and worked full-time as a graphic designer. But at age 26, I came out of a blackout hallucinating bugs. I reached across a full ashtray and knocked over an empty bottle of rum. Gripping the phone, I called my cousin Ang. She came right away and schlepped me to rehab, where I began a new sober life.
After two years clean, I felt more exhausted than a 28-year-old should. My knees ached, my back hurt, and I couldn't turn my head without searing pain in my neck. I went for a checkup. When my blood tests came back, the doctor said, "You have chronic HCV."
"What's that?" I asked.
"Do I need antibiotics?"
He replied, "This is very serious."
Despite my access to life's advantages, I became a drug addict.
After that I didn't hear anything else. I left my body and floated off into space. Once I was back on the street, I noticed the piece of paper I had gripped in my hand. It said, "Liver biopsy." I called my friend Sue, an MD.
"Do you know what hepatitis C is?"
"Yes, it's a horrible disease, usually chronic. The liver erodes. It causes cirrhosis. And sometimes cancer."
"It can be cured, right?"
"Sometimes. Or people can get a liver transplant. But the body can reject the new liver and then the patient dies. Why are you asking?"
"I just came from the doctor. He said I have it and…"
"What?" Sue gasped. "Oh my God."
Hepatitis C (HCV) is spread blood-to-blood. I'd gotten it in the most common way — sharing needles — but other people got it from tainted blood transfusions before the medical world knew what it was. It used to be called non-A, non-B hepatitis. There was no vaccine to prevent it.
That was 1990. I had good medical insurance through my graphic design job, but the only available option then was for me to inject myself with the drug interferon. The cure seemed worse than the virus. Warnings included suicidal thoughts and flu-like symptoms — chills, fever, fatigue, headache. And it had a low success rate of only 45 percent.
Following this regimen would have meant six months of injecting myself. If it didn't work, I would have to go through another six months. It had been nearly impossible to kick drugs and harder still to stay off them, so I was terrified that using a needle again might lead me back to cocaine. I lived with the silent killer, knowing it was methodically destroying my liver. Although I tried hard to block negative thoughts, the screaming anxiety was always there. My liver was swollen and the constant stress was wearing me down.
Because I worked for myself and had a potentially fatal disease, it was impossible to find health insurance I could afford.
Years later, the company I had been working for folded and I became a freelancer. It was impossible to find health insurance I could afford — partly because I worked for myself, but also because I had a potentially fatal disease. In 2010, President Obama signed the Affordable Care Act (ACA) into law, and companies were no longer allowed to refuse coverage to those with an illness. I was finally able to get health insurance. At that time, though, I still had only one option — the dreaded interferon.
In 2013, I found a new primary care physician who specialized in infectious diseases and had been watching the drug trials for new HCV treatments. "Hang on for one more year," he said. "The new Gilead drug, Harvoni, is about to be approved by the FDA. We'll be able to cure you in 90 days with one daily pill."
"Will my insurance cover it?" I asked.
"They'll have to. At first they'll say, 'No,' because each pill costs $1,000."
"What?" I said. "I could never pay that!"
"We will appeal it until they say, 'Yes,' and we'll get you cured."
In October 2014, Harvoni came on the market. It had an excellent success rate of 97 percent, but three months of Harvoni cost upwards of $95,000. My insurance company predictably refused to pay for it. My doc said, "They said you aren't sick enough."
Big Pharma was willing to gamble with my health, but thankfully my doctor was not. He submitted appeal after appeal. In December 2014, AbbieVie, another drug company, came out with a slightly less expensive medicine called Viekira Pak. My coverage paid for that drug plus ribavirin, an anti-viral med used to treat HCV, and it cost $12,000 less than Harvoni but has the same high cure rate.
Big Pharma was willing to gamble with my health, but thankfully my doctor was not.
Thanks to the ACA and my primary care physician, insurance covered the $83,000 price tag. Before treatment, blood tests showed my viral load at 1 million. By the end of the first month of treatment, it had dropped to 20. After the full three months of my chemotherapy, it registered at zero, which was right where it should be. My liver inflammation has gone way down, as well. I have been cured, and I am grateful.
I'm also terrified — if Congress succeeds in repealing Obamacare, the estimated 3.2 million Americans with HCV might not be so lucky. Deaths linked to HCV reached a record high in 2014, according to the CDC, and the virus still kills more Americans than any other infectious disease. Without insurance, a 12-week treatment like mine costs between $99,000 and $113,400. By some estimates, only 45 percent of people who have HCV know it; even more might go undiagnosed (and untreated) without the ACA, which covers hep C testing as one of the recommendations of the U.S. Preventative Services Task Force.
The day my doctor called to say my insurance would cover treatment, I silently thanked Obama and the ACA for saving my life. Now I'm openly asking our government not to take the same chance at survival away from millions of Americans just like me.