by Kim Goldberg
January 28, 2016
I had Hepatitis C for more than 40 years before being cured in 2015 in a clinical trial of Harvoni, the world’s most expensive pill.
I was first diagnosed in 1995. But I probably contracted the virus in the early 1970s from injection drug use as a teenager. Until last year, I had secretly co-existed with Hepatitis C for nearly my entire life, and certainly my entire adult life. I am eager to find out who I will be without it!
Hepatitis C is a virus that slowly damages the liver over a period of many years. It has the potential to lead to cirrhosis, liver cancer, and even death. It is the leading cause of liver transplants in the United States and Canada, and has surpassed HIV as a cause of death.
Approximately 250,000 people in Canada have chronic Hepatitis C, and more than three million people in the United States. New estimates place the US figure at potentially seven million.
Worldwide, there are at least 180 million people living with this virus. The majority of people with chronic Hepatitis C don’t even know they are infected, even though they may have had the virus in their bodies for decades.
A Life Unaware
Back in 1977, I completed a Bachelor’s degree in biology from University of Oregon, in my hometown of Eugene. I was fascinated by viruses and their status as quasi-life, existing as they do on the cusp of our definition of life. It would be many years later before I discovered the virus occupying my own body.
Since 1985, I have supported myself as a freelance writer in Canada, winning awards for my investigative journalism, poetry and spoken-word performances. In that time, I have authored seven books of nonfiction and poetry, as well as screenplays, essays, science fiction stories and a couple thousand articles for newspapers and magazines. I was a current affairs columnist for Canadian Dimension magazine for 12 years, and a freelance news correspondent for the Vancouver Sun in the 1980s and 1990s, among my various gigs.
But my writing career was not the only thing growing during those years. The progression of my undiagnosed Hepatitis C was accompanied by fatigue, nausea, unbearable itching, dizziness, cancelled journalism assignments, a brain wrapped in cotton candy, swollen knuckles, stiff knees, days in bed with no food, nights with no sleep.
My physical symptoms disappeared after I was diagnosed in 1995 and made immediate changes to my diet and lifestyle to support my liver. In 1997, I began studying T’ai Chi, Qigong and Liuhebafa. These practices involved rigorous physical conditioning, further bolstering my health.
However my shift to writing poetry in 2005, after a lengthy career of hard-hitting journalism and nonfiction, was partly a result of my brain no longer being able to hold hundreds of facts, quotes, connections and timelines long enough to generate a complex political article, let alone a nonfiction book. Such cognitive decline (brain fog) is a common consequence of Hepatitis C. Fortunately, it seems to disappear after the virus is gone.
Yet I do not feel diminished by this experience. My journey has been wondrous and transformative. I would not be who or what I am today without every part of it.
In May 2015, I was lucky enough to land a seat in a clinical trial of Harvoni plus ribavirin for genotype 3 people with Hepatitis C. The New Zealand version of this trial had a 100 percent cure rate for people with my profile. So I was excited to make the cut for the Canadian trial!
My study group was based at the LAIR Centre in Vancouver, BC. I live on Vancouver Island, which meant I had many early-morning ferry rides to Vancouver for my check-ups. My 12 weeks of treatment often felt like an extended cruise ship holiday. (Well, okay, maybe not the hemolytic anemia caused by the ribavirin.)
After just one week of treatment, I was saying “Hello, brain! Long time no see!” That’s how quickly the new drugs work. After my first seven days of treatment, my viral load had dropped from four million to 130. After four weeks, I was undetected. And I have remained undetected ever since.
Given what is now known about the life cycle and replication process of Hepatitis C, and the action of the new direct-acting antivirals on the virus, it appears that the new drugs do indeed provide a true cure for Hepatitis C, not simply a remission. They eradicate the virus from the body.
Various all-oral treatments are now available for Hepatitis C, all with extremely high cure rates—often 95 percent or higher. For the current list of recommended treatments for each genotype, see this chart.
My Book: Undetectable
I spent my 12 weeks of treatment writing my latest book: Undetectable. The book is a poetic account of my Hep C journey. I am now using my new book to raise public awareness about Hepatitis C and the politics of withholding the pricey new cure from so many who need it. The book is dedicated to all who are still waiting.
I wrote Undetectable in a Japanese literary style called haibun. Haibun consists of short, descriptive prose (often a travel diary) paired with haiku poetry. Matsuo Basho, Japan’s most famous and revered poet, launched haibun in the 17th century with his Narrow Road to the Interior and other travel diaries of his foot journeys during the final decade of his life. Basho made the journeys, often in failing health, after he had lost or given away what little he owned. It is a narrative rich with resonance for anyone who has lived with Hepatitis C.
Basho’s journey took him to the rugged interior of his country as well as the esoteric interior of himself. I followed in his footsteps (figuratively speaking) as I wandered Nanaimo’s streets, forests, rocky beaches and dark colonial history during my 84 days of treatment. All the while, I found myself meditating on the many meanings and examples of things undetectable: the virus being driven from my body, the mycorhizza connecting all the trees, the homeless man sleeping beneath the highway, the experiments at the Nanaimo Indian Hospital before it was bulldozed, the 97 humpback whales killed and processed at Piper’s Lagoon until there were no more whales…
As we say in Liuhebafa: May you be river flowing, never ceasing.