World Hepatitis Day can celebrate cures for all

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.

World Hepatitis Day Webcase can be heard in California and everywhere

 I was asked whether any events will be happening in California tomorrow to mark World Hepatitis Day. I haven’t been able to find any. However, the California Hepatitis C Task Force is reminding everyone to listen to a live webcast at 7 a.m. PDT from the U.S. Department of Health and Human Services at www.hhs.gov/live-2.
I’m sure the message will give people a lot to think about.

World Hepatitis Day on Tuesday

Tuesday, July 28, is World Hepatitis Day. Events throughout the world are set to raise awareness of viral hepatitis.

About the 400 million people are afflicted with hepatitis B or C, but many don’t know it. Unfortunately, hepatitis B cannot be cured, but fortunately, there is a vaccine to prevent the disease. Hep C can be cured, but many people are denied treatment.

Now that almost everyone who has hepatitis C can be easily cured, it’s time to demand that it happens. World Hepatitis Day will spread the message.

Herr are some lists of events:

Australia

Canada

United States

Video shows yellow people and how the liver works

The European Association for the Study of the Liver found a great way to communicate with the public. To mark the 50th International Liver Congress in Vienna last month, the association gathered a group of cheering people, who were literally covered in yellow. Passersby could check out an augmented reality view of their own livers. Here’s the video:

The Liver Works campaign video

Lessons I learned at the Banff symposium on hepatitis C

Sometimes you get so bombarded with knowledge that it’s hard to sort out. A few days after the Banff symposium, I’m still sorting things. But one piece of information jumps out. Developments in HCV treatment are occurring so quickly that no one, not even health professionals, can keep up with all of the fine details. But they do their best to fill their minds with hepatitis C knowledge at events like the one I just attended.

That brings me to the point of this post: when I see more than 200 nurses, doctors, and researchers attend a conference that is packed with scientific information, I get a sense that there are people out there who are firmly dedicated to curing hepatitis C. The 4th Canadian Symposium on Hepatitis C took place on a sunny weekend in the glorious town of Banff, amid the chiseled-top Rockies in Banff National Park. Not one person out of the many dozen I spoke with was willing to forgo a day of the weekend hepatology conferences–there were more than one–to ski Lake Louise or to traipse over to the hot springs just up the road from the conference centre.

I got a sense that the attendees were yearning for every bit of knowledge they could grab. I also get a sense that they would cheer if hepatitis C were eradicated from the earth. These are very smart people; they could get new jobs in an eye blink.

Take the nurses, for example. According to Curtis Cooper, director of the Ottawa Hospital Viral Hepatitis Program, “In the old days nurses’ main responsibilities were trying to get patients through the awful side effects (of interferon).”

With the new anti-virals, most of those side effects are gone. In my treatment with simeprevir and sofosbuvir, I had a tiny tummy ache for three or four days, much less than I get from antibiotics.

But as Magdalena Kuczynski from the Toronto Western Hospital pointed out, nurses are as necessary as ever. Several attendees expressed concerns about people who fail to achieve a 12-week SVR even with the new one-pill, non-interferon regimens. Although trials have achieved upwards of 96% (and even 100%) cure rates, things could change. Once the drugs move out of trials and patients have less guidance from nurse practitioners, they could become over-confident. Adherence to drug-taking schedules could falter, and SVR rates could drop.

Moreover, researchers at the conference didn’t see an end to the disease coming soon.  Dr. Rob Myers recently moved from teaching in the Liver Unit at the University of Calgary to working as senior director in the Liver Diseases Therapeutic Area of Gilead Sciences, Inc. As one of the foremost researchers in hepatitis C, he predicted the disease could (note the italics) be eradicated within 20 years. That’s a long time for people facing serious liver disease, but Meyers pointed out that the prevalence of hepatitis C is starting to decline.

Meanwhile, Daryl Luster, president of the Pacific HepC Network, warned that we are living in an age of austerity. “I hear that our health system will collapse if we come forward and treat everyone with a hep C diagnosis,” he said.

But eventually health care could indeed treat everyone. Dr. Sharon Hutchinson, from Glasgow Caledonian University, demonstrated that Scotland has been moving toward that goal much quicker than Canada. Canada treats only 1.4% of it’s hepatitis C cases each year, while Scotland treats 3%. Either of those percentages seem tiny, but as more people learn they have hepatitis C, more are bound to get treatment.

The big message for Baby Boomers is to get tested.

Waiting for hep C treatment under the creepy creature time bomb

It’s coffee break time. Some 200 attendees at the Canadian Symposium on Hepatitis C have just applauded one of the many brilliant speakers. The symposium is three-quarters over, and so far I’ve learned that researchers in hepatitis C are pressing to get more people tested. But once they are tested, the jury in this field is out on whether they should be treated–yet.

Many researchers suggest that treatment wait for at least stage 3 fibrosis. That would be less of a burden on Canada’s health care resources. But it leaves those who have been diagnosed having to contend with the ticking time-bomb feeling.

I went through that feeling. It was for a very short time because, luckily–or unluckily–I was at stage three. And luckily I was cured through Gilead’s Solvaldi and Janssen’s Galexos–and no interferon. But even the short wait I had before treatment produced a creepy feeling. It felt like a tiny creature was colonizing my body, and it had fangs that could bite any time.

People are sipping coffee, and we will all be heading into a few more sessions soon. One will be a debate on the very topic I’m writing about. I’ll let you know whether one side wins.