May is on the way with hepatitis C awareness

May is Hepatitis Awareness Month. As the month begins, it’s a good time to mark your calendar with an important date. May 19 is Hepatitis Testing Day.

As a reader of this blog, you’ve probably already been tested. Many readers are dealing with their own virus or have friends who have hep C. Other readers are medical professionals, and still others, I’m glad to say, have been cured.

But not everyone has. You can’t be cured if you don’t know you have hep. Let’s all try to mark the month by thinking of those who have yet to be tested, especially Baby Boomers. Please tell your friends about the month and the testing day.

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British Columbia to cover drug costs for anyone with hepatitis C

In a year or so, British Columbians waiting for hepatitis C treatment will need to wait no longer. The province recently announced that starting in 2018-19 its PharmaCare drug plan will cover direct-acting antivirals for any resident with the disease, no matter how much liver damage they’ve suffered—or not suffered.  Among the drugs PharmaCare will cover are

  • Daklinza (daclatasvir)
  • Epclusa (sofosbuvir/velpatasvir)
  • Harvoni (ledipasvir/sofosbuvir)
  • Sovaldi (sofosbuvir)
  • Sunvepra (asunaprevir)
  • Zepatier (elbasvir/grazoprevir)

Hep C often takes several decades to seriously attack the liver, and many Canadians have had to wait years before their provincial drug plan would cover these quick, incredibly effective treatments. The situation has been similar in the United States, where restrictions under Medicaid vary from state to state.

Three years ago, many plans insisted a patient be diagnosed with stage 3 fibrosis or even cirrhosis before they would cover the drugs. More recently, that dipped to stage 2 or even 1 in many provinces and in some U.S. states.

Gradually, insurers worldwide have been negotiating lower prices for bulk buying of the drugs. The pan-Canadian Pharmaceutical Alliance has been negotiating on behalf of all Canadian provinces. It’s success in lowering costs has allowed British Columbia’s announcement. Under B.C.’s PharmaCare, patients pay a just small percentage of the drug cost, depending on their income. I live in British Columbia. I’m so happy to learn this news.

 

‘The Sovaldi of rare diseases’ on the market for children

For the two years I’ve been writing this blog, I’ve stuck to stories specifically about hepatitis C. Some were critiques of the high prices charged for hep C drugs.Today I’ve learned that the $100,000 or so required to rid patients of the liver killing disease has been topped by far by a drug that can save children’s lives—if their parents can afford millions of dollars for treatment.So I’m writing about a new (not for hepatitis) drug, Spinraza.

The drug maker Biogen has just gained U.S. approval for Spinraza. Injected directly into the spine, Spinraza can halt or even reverse spinal muscular atrophy. SMA afflicts babies and children. They progressively lose muscle control and die, usually before age 20 and often as toddlers or infants. SMA is the leading cause of death in infants. Spinraza costs $750,000 U.S. per year for the first year of treatment, and $375,000 per year after that.

Biogen, like the companies that developed drugs for hepatitis C, can be applauded for its research on the breakthrough SMA drug. But like hep C drug makers, Biogen is charging far too much.

Interestingly, healthcare analyst Geoffrey Porges, called Spinraza “the Sovaldi of rare disease drugs” Porges is an analyst for Leerink, a healthcare investment bank. He made the statement to the biotech publication Endpoints News. Gilead’s Sovaldi set the pace in drug pricing in its 2014 rollout of Solvaldi. The hep C treatment cost patients $84,000 for eight weeks of pills that were combined with interferon or simeprevir. Although the cost of Solvaldi and other hep C drugs has decreased somewhat in the past two years, many, many patients still cannot afford treatment.

Now there’s a much costlier drug that can keep helpless children from dying. One can imagine the dollar signs in the eyes of Biogen shareholders—and the tears in the eyes of parents who cannot afford the drug.

Phony Harvoni spurs new packaging in Japan

Gilead Sciences in Japan has decided to change the packaging of Sovaldi and Harvoni in that country. The direct-acting antivirals will now be sold in blister packs rather than bottles, which would make it harder for counterfeiters to scam patients who have hepatitis C.

This comes soon after Japan’s  health ministry announced that phony Harvoni tablets had  been found in drugstores in Nara Prefecture. The false drugs were sold in three stores, all part of the same drug store chain. The bogus Harvoni  tablets were discovered when a patient questioned the odd shape of the pills, which were different in colour and shape from the standard orange Harvoni tablets. The bad pills had been placed in actual Harvoni bottles.

Gilead has investigated the counterfeit drugs and has announced they have not caused any health problems. But presumably there were no cures. That must have been extremely disheartening to patients who took the phony pills. It’s almost worse than not being able to afford the real ones.

Preventable hep C treatment failures

Almost everyone whose hep C is treated with Harvoni is cured of the disease—but “almost” means not everyone. Although cure rates of 94-98 percent have been cited for the drug, that leaves 2 – 6 percent of people who have taken Harvoni distressed because it didn’t work for them. The good news is that treatment failure is often avoidable.

A study at Mount Sinai Medical Centre in New York looked at 39 people whose hep C treatment with ledipasvir/sofosbuvir (Harvoni) had failed. The most common reason was that a person had missed seven or more doses of the drug. The study recommended clear pre-treatment counselling and an uninterrupted supply of Harvoni.

Doctors and clinics should do the counselling, and pharmacists and insurers should make sure that the drugs get to the patient without a break.

check-boxesThe patient has a role in this too. Brain fog is a familiar symptom for many people with hep, and it can make it easy to lose track of proper pill taking. I was worried about that during my treatment, so I drew up a chart with check boxes to tick off each time I took a pill. Other methods pop into mind such as putting Xs on a calendar or using a task-tracking app on your phone.

As they say, an ounce of prevention is worth a pound of cure–especially after the cure has been prescribed.

Two T’s and the liver

Most people who learn they have hepatitis C become more conscious of what they put into their bodies, especially the substances that are good or bad for the liver.

tumeric and tumeric roots

Tumeric powder comes from a root.

Today I’m thinking of one good and one not-so-good substance, both beginning with the letter T: turmeric and Tylenol. I’m thinking of turmeric because I am replenishing my spice shelf and have come to regard the yellow spice as one of nature’s gifts for liver health. As for Tylenol, after having been cured of hep C for two years, I’m thinking of trying it again.

Tumeric powder, which I use as a spice, comes from the root of the turmeric plant. You can grow it in your garden and keep it there through the winter, if it doesn’t get too cold. Tumeric stays hardy in zones 7b – 11. In the summer, it will grow white, tropical-looking flowers.

Studies have shown that turmeric tends to raise HDL (good cholesterol), which reduces LDL (bad cholesterol) and the strain it puts on the liver. A German study in the medical journal Gut concluded that turmeric inhibits the hep C virus from entering liver cells. My hep is gone, but cholesterol threatens my heart, so I will keep using turmeric. Also, I like its taste in cooking.

Tylenol, which has been shown to be safe for the liver in doctor-recommended doses, can injure the liver with indiscriminate use. Tylenol overdose is among the leading causes of liver failure, and the amount that would cause overdose may not be the same for everyone. Before I was diagnosed with hepatitis C I noticed that Tylenol upset my stomach, so I asked my doctor for other drugs for pain relief. That was lucky for me. Even if Tylenol would have done me no harm, I would have been worried about it throughout my treatment.

Now that I’m better and my liver has regressed, my doctor says there’s nothing wrong with Tylenol. For normal aches and pains that I’d rather avoid, I’m considering it.

Liver help flows through a filter

I wrote last year that coffee can help fend off liver damage. The latest recommendation from researchers is that the brew should flow through a filter.

coffee-filter

Dr. David A. Johnson explained in a recent post on Medscape that coffee has long been known for its ability to slow the onslaught of liver disease. Recent studies show that brewed, filtered, caffeinated coffee has the best effect.

As coffee seeps through a filter, much of its kahweol and cafestol, organic compounds that raise cholesterol, remain with the grounds. The pot fills with a healthier brew.

Dr. Johnson recommends that people with hepatitis C be treated for their disease. While waiting for treatment they should drop alcohol entirely and replace it with at least three cups of coffee per day. He says he guarantees than none of your favorite coffee shops will ask for prior authorization.