Elizabeth Rains on Hepatitis Awareness and her incredible recovery

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Elizabeth Rains was infected with Hepatitis C, unknowingly affecting her for nearly 40 years. Was it wild parties and rough sex, the blood transfusions after childbirth and following a horrific car accident, or perhaps some other event during the freewheeling 60s and 70s that caused the infection? Although she doesn’t know for certain, she does know that she is officially 100% cured, thanks to a miracle treatment.

Demon in My Blood (Greystone Books) chronicles her personal journey from diagnosis to cure, and features stories with many other hep C positive people—shedding light on the workings of the disease, the suffering it has caused others, and the path to a cure.

The launch of Demon in My Blood intentionally takes place in May, which is Hepatitis Awareness Month. We sat down with Elizabeth to talk about her journey, the new book, and what a positive hepatitis diagnosis means today.

How did you come to be diagnosed in April 2014 and what was the doctor’s initial prognosis? What was your reaction, and that of your friends and family?

I moved from Vancouver to the Sunshine Coast and switched to a doctor who was closer to my home. My new doctor, who routinely tested patients for hepatitis C, sent me for a blood test. It showed I had enzyme levels that were associated with the disease. Further tests revealed the active virus. She told me untreated hepatitis C can cause liver cancer or the need for a liver transplant. Treatment could cure at least half of the cases, but the treatment available when I was diagnosed produced horrendous side effects.

First I thought I had misunderstood the doctor’s words. When I realized I hadn’t, it felt as if I were enveloped in a dense, demonic cloud. I was scared to death, literally, because I thought I would die.

My immediate family, who live in British Columbia and San Francisco, were one hundred percent sympathetic and kind. But I didn’t tell my mom or siblings, who were in Florida. I didn’t want to worry my mother and was unsure what my four sisters would think. Eventually they learned of my infection, and sadly, one sister showed she was prejudiced against people who are infected with hepatitis C.

I learned that a few of my friends held the same prejudice. They either believed the disease can be easily spread, which is wrong, or that everyone who has it is a depraved IV drug user, which is wrong too. It’s very hard to contract hepatitis C, and any type of person can get it.

Although you didn’t uncover the exact source of your infection, how did you try to understand the diagnosis? 

I wracked my brain, trying to figure out the cause of my illness. First, I remembered a post-partum blood transfusion. Then I thought back to when I was a naive flower child in the days when hippies explored life with abandon. They thought they were invincible back then, and so did I.

While writing Demon in My Blood, I realized I may have acquired hepatitis C through rough sex or after I was terrorized by bikers. Even a childhood activity involving blood flashed into my mind. Meanwhile, I was reading scores of research studies about hepatitis C and about clinical trials that were being done to develop a cure.

I read that the symptoms can be debilitating. How did living with hep C for 40 years affect your day-to-day life?

Hepatitis C progressively scars the liver until it can no longer function. Eventually the person’s skin may turn yellow. Fluid may accumulate in their stomach. Their legs may swell. They may feel nauseous, confused and drowsy. There are many, many symptoms, but they might not start for decades.

That’s what happened to me. I was an active woman who worked out with weights, did yoga, and strived to eat healthy food. I stayed in better shape physically than many people, although probably not at the optimal level of health I would have experienced without the infection. In the last couple of years before my treatment, some signs began to emerge. I had a hard time concentrating on more than one task and suddenly lost a lot of weight even though my eating and exercise habits hadn’t changed.

But you don’t know for certain the exact incident that led to your infection. What are many of the infections attributed to?

Many people, including me, suspect their infection came from a blood transfusion. Before the 1990s that was the main way to contract hepatitis C, worldwide. Since that time, the virus has been eliminated from blood banks. Unsterilized invasive medical equipment can still transmit the virus, which is rare here, but less so in developing countries.

There are very rare instances of hepatitis C infection through rough sex or from an accidental puncture by a shared object, such as a razor. A small percentage of mothers with hepatitis C pass it along to their baby. The largest remaining cause of hepatitis C transmission is needle-sharing among drug users.

You lost friends and family after your diagnosis due to stigma and stereotype. When reading about Demon in My Blood and I was thinking that there seem to be some parallels to the HIV/AIDs epidemic. What are some of the incorrect assumptions about hepatitis?

The assumptions are that everyone who has hepatitis C is a drug addict. That’s just not so. Demon in My Blood includes interviews with many people who had contracted the disease. Some had abused drugs back in the days of sex, drugs, and rock ‘n’ roll, and they then moved on to very different lifestyles. Others never touched illegal drugs. I interviewed many types of people who had contracted hep C, from an air traffic controller to the former manager of the Rolling Stones.

Other misconceptions include the idea that hepatitis C can spread through ordinary contact, such as touching the person or breathing the same air, or sitting on the same toilet seat. These ideas are just plain wrong.

What was the most difficult part of the diagnosis?

Fear: intense, unrelenting fear, until I was treated with a miracle cure.

How did writing help?

I’m a journalist. When I wrote for daily newspapers, I learned that deadline pressure gives a reporter little time to indulge in sorry thoughts. I had learned to research a subject, synthesize many bits of information, and just write about it. Also, I was lucky that when I had worked in New York City, I learned to touch type quickly. I tried to type the Demon story as fast as my thoughts could flow, without censoring them. That put me in a Zen place during the writing process and gave me periods of peace.

There are different types of hepatitis and some are curable. I remember getting vaccinations for hep A and B in school, but no mention of hep C. The treatment you received was also fairly new on the market at the time.

“Hepatitis” refers to disease that attacks the liver, which hepatitis A, hepatitis B, and hepatitis C all do. But these are different illnesses, caused by different viruses. Hepatitis A, usually a mild disease, almost always goes away on its own. B and C can become chronic. There are vaccines for A and B but none for C. There are cures for C but none for B.

With the development of direct-acting antivirals for hepatitis C, which Health Canada approved just days before my treatment, upward of 95 percent of people can be cured. Unfortunately, if their liver damage has advanced too much before treatment, they may still need a transplant in order to survive.

My cure, a combination of two pills, Sovaldi and Galexos, was the first available that didn’t require co-treatment with the dreaded drug interferon. Today many direct-acting antiviral drugs for hepatitis C are on the market. Most are taken for twelve weeks with slight or no side effects, and enormous cure rates. Harvoni, Epclusa, Viekira Pak, and Zepatier are some of the big-name brands.

You had $115,000 worth of treatment, which was covered by your medical insurance. But not everyone is this fortunate. If it’s a cure, why isn’t it available to those who need it? 

I was extremely lucky. My employer provided an extended medical plan that would pay for any prescription drug. Few plans do that. The provinces provide some drug coverage, but because of their astronomical cost, the miracle cures were rationed. Only people with significant liver damage—or those who were rich, or ready to mortgage their homes—were able to obtain treatment. I feel that was entirely unfair. This disease can turn bad at any time, and a wait for treatment prolongs a patient’s fear.

But there’s great news now! The Pan Canadian Pharmaceutical Alliance, which negotiates drug prices on behalf of the provinces, recently convinced pharmaceutical companies to give Canada a large discount on the drugs. British Columbia’s Fair PharmaCare program is expected to provide the drugs for all hep C patients, regardless of their degree of liver damage, in early 2018. Other provinces are gradually changing their coverage rules too.

You’ve become a huge advocate for those diagnosed with hep C. In Canada, approximately 75% of those diagnosed are baby boomers, but it’s only recommended to get tested if you’re exposed to risk factors. What can people do, and what keeps people from getting tested?

They should just ask their doctor for a test. Their GP will give them a requisition form, and they can head to the nearest testing lab and get blood taken. It can be done along with your cholesterol test or other blood testing. It’s so easy. There’s also a saliva test that some doctors may use.

People don’t get tested because either they don’t know much about hepatitis C or they don’t believe they could have it. Baby boomers are by far the most heavily infected group and the cure is easy now. They shouldn’t hesitate about learning their status.

What’s next for you?

I’m kayaking and hiking a lot, and I’m keeping on top of hep C news. I post it from time to time on my website, HepBoomers.net, and I stay in touch with a lot of the wonderful people who had been infected with hepatitis C that I met while writing Demon in My Blood.

As well, I’m starting a new book in collaboration with police detective Joe Roubicek. It’s about the abuse and exploitation of elders, which is a terrible, growing epidemic in our society.

Elizabeth Rains teaches university courses in writing and editing and has written for magazines and newspapers in Canada, the U.S., and Ireland. She was editorial director and publisher of Pacific Rim magazine for fourteen years and holds a master’s degree in journalism from Carleton University. Demon in My Blood is her second non-fiction book.

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