Daughter Jessica Raya and I sign books at Chapters. Her launch is 6pm today, Emerald Room, Vancouver. Mine 7pm June 16, Truffles, Gibsons. http://ow.ly/i/vB59L
Demon in My Blood is off the press, in book stores and on Amazon.ca and Amazon.com. 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
Main Street and King Edward Avenue
Friday, June 16, 2017, 7 pm
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.
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.
Hepatitis C may have done one good thing for me. It may have lowered my cholesterol for a while–or maybe being cured ramped it up.
In a 2009 study from Massachusetts General Hospital, researchers found that a significant number of people who are cured of hep see their LDL (low density lipoprotein, known as bad cholesterol) “rebound to levels associated with increased coronary disease risk.” That seems to have happened to me. My cholesterol was on the low side of normal before my treatment, but after the virus cleared it jumped into the danger zone. Here’s a chart I obtained from my ehealth, a website that reports on patients’ medical tests in British Columbia:
The chart shows an early 2014 blood test I had before I was treated with direct-acting antivirals that summer. The next three dots on the chart show my bad cholesterol after my treatment and cure.
I may have inherited a propensity to high cholesterol from my dad. He died of heart failure, and I have no other risk factors. Perhaps, as research suggests, hepatitis C may have lowered or stabilized my inherited build up of cholesterol. The liver eliminates cholesterol through bile, and the liver changes after treatment. There’s a possibility that my liver, which regressed from fibrosis, never regained strength in cholesterol clean-up.
I’m no longer worried about my liver, but I’m worried about my heart. It’s time to get out and exercise, get rid of fatty food, and keep on top of this new health risk. Those who have been cured of hepatitis C still need to be tested–for cholesterol.
Peer-to-peer counselling for people with hepatitis C has been available in the United States for several years. Now people in British Columbia have their own help line through the Pacific Hepatitis C Network.
This is great news for Canadians who have hepatitis C and want to talk with someone who has had their own experience with the disease. The toll free number for British Columbians is 1 888 411 7578. Ask for Daryl Luster.
For the U.S. helpline, please call 877-435-7443.
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.
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.
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.
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.
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.
The 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.