Five years ago: freaked out about hepatitis C

With World Hepatitis Day coming next month, I’ve been looking back to where the world was five years ago when I was diagnosed, when the world of hep C treatment had just begun to change. I didn’t come fast enough for me, a least I thought so five years ago today. My biggest memory of the time was that I was freaked out. I was freaked out because

  • I had learned I had contracted hepatitis C.
  • I didn’t know how I had contracted it.
  • The only approved treatment was interferon, a debilitating drug with no promise of a cure.
  • I was waiting for an appointment with a gastroenterologist. It was more than two months off. I had been put on the cancellation list but my chances of an earlier appointment seemed slight.
  • I was yet to learn the extent of my liver damage.

Millions of people were just as freaked out as me, with many of the same reasons.

With World Hepatitis Day coming next month, the freak-out level over hepatitis C has lowered somewhat for most newly diagnosed people. That’s thanks to the widespread use of drugs that cure almost all instances of the disease. The drugs have significantly decreased the instance of chronic hep C infections.

On World Hepatitis Day 2018 the World Health Organization had estimated 71 million cases of chronic hepatitis C worldwide. That’s less than half of the WHO’s estimate for the year I was diagnosed.

The world has come a long way in hepatitis C treatment. Announcements on a further dip in infections are expected next month. Stay tuned and stay vigilant. There’s still a lot more to be done to eradicate this horrendous disease from the earth.


Telomeres and liver recovery after hepatitis C are connected

I’ve sometimes wondered whether my bout with hepatitis C affected my lifespan. Probably not, according to a book I just read.

The Telomere Effect, by Dr. Elizabeth Blackburn and Dr. Elissa Epel, explains that, in general, the length of a person’s telomeres has more influence on their lifespan than all other factors, including diseases they have had.

Blackburn, a Nobel Prize winner, describes telomeres as something like aglets, the end caps on shoelaces. The plastic caps keep shoelaces from unraveling, and when the aglets wear out, the laces unravel.

Telemeres cap the end of chromosomes. Over the years a person’s telomeres shorten. When they become too short as a person grows old, cell division that is directed by the chromosome stops. Ill effects, such as the generation of cancer cells, become more likely.

A study in the World Journal of Gastroenterology suggests that telomere shortening is related to whether a person with hepatitis C will develop cirrhosis.

The study, by Lucia Carulli Ph.D., explains that when the liver is injured and trying to repair itself, “there is a high cell turnover.”

With each turnover, according to Blackburn, the telomeres shorten. Therefore, a lot of repair may equal a lessened ability for further repair.

However, states the Telomere Effect, you can protect your telomeres through lifestyle changes. Epel, co-author and health psychologist, suggests that people should change their response to stress.

We can’t prevent all stress our lives. Instead, Epel says, we should avoid panic or depression when confronting stress. Seeing stress as a challenge makes one—and one’s telomeres—healthier.

A call for Baby Boomers to be tested for hepatitis C

The Centers for Disease Control and Prevention recommends that everyone born between 1945 and 1965 be tested for hepatitis C, yet few of these people have been tested.

In the CDC’s most recent study of the problem, only 12.8 percent of Baby Boomers had been tested.

That may be because people tend to ask a doctor for a test only when they feel sick. I would have never been tested for hepatitis C on my own volition. Rather, I was lucky enough to switch doctors. My new doctor tested me as part of her standard routine.

Not all doctors do that, so Baby Boomers should be proactive. They should ask for a test regardless of their feelings of heath, which could suddenly vanish at any time because of hepatitis C.

The chronic stage of hepatitis C can hang around for decades without symptoms. Amazingly, even when the liver begins to stiffen with cirrhosis, many people have no symptoms at all. But eventually, physical effects can emerge.

After a while the skin may become itchy. A person with chronic hepatitis C may bruise easily, bleed easily, or acquire spider-like blood vessels on their skin. Swelling in the legs, confusion, or weight loss may occur. These are all signs that cirrhosis is present and the liver is unable to manage all of the jobs in the body that it normally it does.

Before that happens, people should be tested. Hep C can be cured, but there’s no cure other than a transplant for a severely cirrhotic liver. It’s time for all Baby Boomers to get tested, so if they have the disease they can be treated. Hep C is curable, but only if you know you have it.

The B and C of viral hepatitis has merged

Over the past two years, the goal of eliminating hepatitis C has been merging with the goal of eliminating hepatitis B. These distinct diseases, which in the past had usually been covered separately in the media, have been increasingly lumped together under the term “viral hepatitis.”

They have similar symptoms but come from different viruses and have different treatments. B can be vaccinated against and treated—but not cured. C can be treated and cured—but there is no vaccine against it.

So the world needs a hep B cure and also a hep C vaccine. Science continues to look for these remedies.

An RNA-interference drug is being tested in Texas. It has shown progress toward curing Hepatitis B.

In the past 25 years, at least 20 potential Hep C vaccines have been tested on animals, and clinical trials continue.

One hopes all of the researchers will succeed. Then in the future, when people talk about “viral hepatitis” they might not be talking about two distinct diseases, but instead about two extinct diseases.

British Columbia approves hep C treatment for all

The province of British Columbia has just made treatment for hepatitis C available to all of its residents. Previously, the B.C. government rationed treatment according to a patient’s degree of fibrosis.

Health Minister Adrian Dix

Health minister Adrian Dix announced this news today, stating, “I’m pleased to share that as of today, anyone in B.C. living with this now-curable virus will have a choice of several treatment options — all of which are fully funded under PharmaCare.”

Vosevi, Gilead Pharmaceutical’s new treatment for hepatitis C, became available for British Columbians through PharmaCare this week. Ontario approved the drug last week under its similar government-run drug plan.


Full availability of treatment was long awaited. I live in British Columbia. When I was diagnosed four years ago, the cost of the early direct-acting antivirals was more than $100,000. No Canadian province would pay for them. I was lucky to have one of the best employer-paid medical plans in the country, so I was treated. But most people infected with hep C back then had to wait for treatment, often for years.

Now people just need to be tested and cured. Some 73,000 British Columbians are still infected with hepatitis C. The time for their cure is now.


$5 HCV drugs may be affecting profits

Gilead Sciences in its second-quarter report for 2017 reported that its sales of direct-acting antivirals for HCV were down about 25 percent from the same period last year (2.9 billion, compared with 4 billion). Does this mean that fewer cases of HCV are being treated, or does it mean the prices of antivirals are going down?

It’s hard to compare the prices because the company is secretive about its negotiations with insurance companies and governments. When the drugs were first on the market, wealthy patients were shelling out upwards of $100,000 for the drugs. Now, except for uninsured people or those on Medicare or Medicaid, Gilead is advertising a $5 bargain price for the drugs. Considering the exclusions, that doesn’t seem like charity, but it may be keeping Gilead’s cash coffers down.

As for the numbers of people being treated, the latest report from the World Hepatitis Alliance shows they’ve more than doubled since 2013, when 440,000 people were treated, mainly with interferon.

Book about Hepatitis C now available, will talk about Demon in My Blood at May & June events

Demon in My Blood is off the press, in book stores and on and The book tells the story of my bout with hepatitis C, my cure, the development of direct-acting antivirals, the accessibility of the drugs, and the quest to learn how I acquired the disease. Demon in My Blood can be read as a history of medical innovation, a patient-experience chronicle, or a mystery. It’s also a cry for widespread testing.

The book will be launched in two locations:

Wednesday, May 31, 2017, 7 pm
Book Warehouse
Main Street and King Edward Avenue

Friday, June 16, 2017, 7 pm
Truffles Cafe
264 Gower Point Road

I’ll be reading and speaking about the book. There will be light refreshments and a door prize at each location. I hope to see you there.

The liver is important–so get out the hep C testing message

As Hepatitis Awareness Month continues, it’s time to think more about testing for hepatitis C. The disease is curable, but the liver, if too severely damaged, is not.

Everyone who has hep, had hep, works with people who have hep C or is reading this blog because of other interests, should pass the testing message along. It’s vital, just like the liver.

Hepatitis C ravages the liver. It’s symptoms usually creep up sluggishly and at first, imperceptibly. That’s why most people with the chronic form of the disease don’t know they have it. That’s why feeling symptoms of hep C should not be the only reason to be tested.

Being a baby baby boomer or suspecting you have been in contact with someone else’s unscreened blood should be the reason.

You can’t live without a liver. It filters blood, removing harmful substances, such as alcohol. It manufactures proteins that defend against infection and help the blood to clot. It regulates the supply of vitamins, minerals, and hormones, including sex hormones. It produces, stores, and regulates glucose and fat. It makes and eliminates cholesterol and also converts it into lipoproteins that deliver energy to the cells.

Altogether, the liver performs more than five hundred bodily functions. It continues to do these jobs during the early stages of hep-caused fibrosis, and early on it can recover fully from damage. Later, when the liver hardens into cirrhosis, it progressively loses important abilities. When the damage becomes severe, liver cancer or a liver transplant are common results.

So no one should risk this vital organ, whether they have symptoms of hep C or not. It’s easy to get tested. Just ask your doctor–or ask your friends to ask theirs.