Cost for hepatitis C drugs going down–way down?

I’ve been away from this blog for a while. That’s good news for people who have hepatitis C. I was among the first few patients to receive direct-acting antivirals in 2014. Within six weeks my viral count was nearly nothing. In six months, it was nothing. In another six months, my liver, which had been on the edge of cirrhosis, was back to normal.

The good news about dragging my feet on writing this blog? It’s that a few years after being cured some people can almost forget that they ever had hepatitis C. *

Occasionally, though, something brings the disease back to top-of-mind. That happened today, and it was good news.

An anti-viral under development in Egypt purports a 100 percent cure rate. Better yet, the price of the 12-week treatment from Pharco Pharmaceuticals is predicted to be $300. Think of the progress in that! When I was treated, Gilead Sciences set a $120,000 price tag on my drugs. My book, Demon in My Blood, reveals that the cost of production was actually more like the $300 drug being developed today.

Better news may come in a decade. The World Health Organization vows to eradicate hepatitis C from the earth by 2030. If so, the drugs will cost nothing.

 * Many people suffer lingering effects after being cured of hepatitis C. I’ve written about their struggles in the past and hope for their full return to health.


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.


Holiday thoughts about hepatitis C and its cures

It’s odd that during the holiday season, after three years after being cured, I still think about hepatitis C. Many years ago, a blood transfusion that saved my life may have been the route to my disease. Or my infection may have been the result of a horrendous incident with bikers. Or perhaps there was transmission in my family, when I was young.

Twelve weeks of two of the earliest direct-acting antivirals led to my SVR in January 2015, but the puzzle of my infection lingered.

I decide to investigate. That led to a book about my journey with the disease and the pharmaceutical research that led to anti-viral cures. This past summer, Greystone Books published Demon in My Blood.

I thought that getting my story out—in a big way—would end my thoughts about the disease. Yet I continue to worry about my liver. It has regressed back to normal, from being near cirrhosis during my infection. That gives me confidence, but not certainty.

I slipped walking on the beach this fall and then felt a pain in my side. It kept me awake at night for more than a month. I wondered whether the pain was not actually a bruise or a torn rib. Might it have been some residual damage to my liver?

Entering the holiday season, I worried about parties I would attend. I had gone back to having a glass of wine now and then about a year ago. But it’s too easy to accept a refilled glass when someone carries a bottle to the table offering another round. Would another glass be good for me? Would there be unknown jiggers of vodka in the punch?

Occasionally I just get pain in the right side. But I have digestive problems unrelated to hep, which can create pain that seems like it’s coming from the liver. My doctor said to see him if the pain becomes steady.

So I continue to worry about hepatitis C, and I keep to a healthy-liver diet. But the good news is and always will be that I’ve been cured of hep C—and that cures are available for everyone, once they are diagnosed.

Every year more people are cured–and 2018 should see a decrease in the number of infected people worldwide. That’s good news for the new year. May you have a happy one.

$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.

Hepatitis drug coverage in English-speaking countries

Today I have a few updates about drug coverage in some English-speaking countries:

  • For more than a year in Australia, the government’s Pharmeceutical Benefits Scheme has been charging low-income patients $5.30 for treatment with direct-acting antivirals. Other Austrailians pay only $37.80 for a treatment. A family physician or nurse practitioner can prescribe the drugs in consultation with a gastroenterologist or hepatologist specialized in chronic hepatitis C infection.
  • Residents of the United Kingdom await better coverage of drug costs for hepatitis C. Last year the National Health Service limited its coverage of the hep C miracle cures to 10,000 patients per year, whereas 160,000 people in the UK were infected with hepatitis C. A spokesman for the NHS said, “As prices come down we hope in future years to be able to expand treatments even further. . .”
  • Canada, where each province runs its own drug plan, has been seeing better coverage for hepatitis C antivirals. British Columbia, for example, has announced that treatment for everyone with hepatitis C, no matter their degree of liver damage, will be covered by its Fair PharmaCare plan starting in 2018. Under the plan, patients pay a deductable, depending on their income. After paying the deductible, they pay 30 percent of drug costs to a maximum amount. At that point the plan pays everything. For example, a hepatitis C patient with a family income of $50,000 a year would pay a total $1,650, including the deductible and 30 percent payment. The plan would pay everything after that.
  • In the United States, drug plans and Medicaid may not cover hep C treatment for all levels of fibrosis. The big worry there recently has been the repeal of the Affordable Care Act and the Senate’s proposed replacement, which could allow States to alter their rules so that pre-existing conditions may preclude coverage. Hepatitis C can hide in the system for decades, until it emerges as a pre-existing condition.

Blog readers, please let me know the news from your location.