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.
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.
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.
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.
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.
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.
Since my hepatitis C cleared after treatment with direct-acting antivirals, my liver went back to normal. My alcohol habits regressed somewhat too. I stopped drinking entirely when I was infected with hep, but now I’ve gone back to drinking a glass or two of wine on the weekend or when guests come by for dinner. Still, I remain wary about alcohol. I usually enjoy my beverage as a spritzer: half wine, half soda water.
For those whose hep is yet to be cured even that much alcohol can accelerate the rate of liver damage. By how much? It’s impossible to predict. Yet some averages are known:
According to the U.S. Department of Veterans Affairs, the average man who is infected at age 40 or later and drinks a lot can expect a cirrhotic liver in thirteen years. The slowest progression occurs among non-drinking women under 40 who contract the disease early. It can take 40 years before their disease turns deadly.
But again, those are averages and everyone is different. The best bet for anyone who has hep is to drink no alcohol at all. For those who have been cured, be very cautious.
On July 28, World Hepatitis Day will mark a milestone for those who have rare genotypes of heptatitis C. Epclusa, Gilead’s one-pill combination of sofosbuvir and velpatasvir, has been shown to cure genotypes 1 through 6.
Previously, those with genotypes 4 – 6 could be cured only with interferon. The drug often caused extreme flu-like symptoms as well as depression for close to a year. A large portion of patients abandoned treatment before they were cured.
Twelve weeks of Epclusa alone has proven 98 percent effective for those with almost all stages of liver damage. The drug taken with ribavirin has been shown to cure 94 percent of patients who have decompensated cirrhosis.
The cost of Epclusa is $75,000 for 12 weeks. That’s less than other direct-acting antiviral treatments, except for Merck’s Zepatier , priced at $54,000. Still, that’s about the same as the median annual household income in the U.S. ($53,657 according to the 2014 Census). That’s a big price to pay, but at least now there’s hope for everyone.
Australia recently became the first country in the world to make direct-acting antivirals free for all of its citizens who have hep C and are at any stage of fibrosis. The government health plan pays for the drugs.
Anyone who has hepatitis C and holds a Medicare Card (every Australian citizen gets one) can be treated though their general practitioner. The process is simple. After a person tests positive for HCV, their doctor consults with a hepatologist or gastroenterologist and writes the prescription. It doesn’t matter how high—or low—the person scores on a Fibroscan.
The country’s Prescription Benefit Scheme pays for the drugs. The patient pays either a $6 or a $38 dispensing fee, depending on income.
The unfettered, virtually free DAA treatment policy was introduced in March after intense campaigning from Hepatitis Australia and other advocacy groups.
Despite the demise of interferon, the debilitating drug that was used for two decades to treat hepatitis C, many patients must still deal with one component of the old treatment. Under the brand names CoPegus and Rebetol, ribavirin is sometimes prescribed in addition to direct-acting antivirals. Doctors most often prescribe it for difficult cases of hep C.
The difficult cases include patients with cirrhosis. Recent studies show that ribavirin combined with DAAs can reduce the length of treatment for many of these people (see Ribavirin: Past, present and future).
Ribavirin’s common side effects include anemia, insomnia and irritability. For some patients, the side-effects can be mild. Many doctors feel they are a small price to pay in exchange for big drug prices patients can’t afford. Twelve weeks of a DAA plus ribavirin instead of 24 weeks of a DAA alone could save a patient many tens of thousands of dollars. Ideally, patients and doctors shouldn’t have to think about that. But they do.