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.

‘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.

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.

A Big warning issued for hep C antivirals

Direct-acting antivirals can now cure every kind of hep C, quickly. The debilitating ordeal associated with the former treatment, interferon, is long gone. But for some patients, DAA treatment has a big-with a capital B—drawback.

The Federal Drug Administration has just ruled that a warning for people with hepatitis B must be included in packages of many direct-acting antivirals. The ruling came after the agency found 24 inactive cases of hepatitis B had become virulent among patients being treated for the C disease.

Unlike hep C, no cure exists for chronic hepatitis B. However, a vaccine can protect against it, and treatment can suppress replication of the virus.  But uncontrolled hepatitis B can cause liver failure.

The FDA warning on the hep C antivirals states that people infected with HBV risk reactivation of hepatitis B.

Ultrasound recommend twice a year for some people who have cleared hep C

Two leading researchers have warned that many people who achieved sustained virologic response after anti-viral treatment should continue to be screened for liver cancer.

Roberta D’Ambrosio of the Migliavacca Center for Liver Disease in Italy and the Department of Pathology at Beaujon Hospital in France, and Massimo Colombo of the Migliavacca center, recommended the testing in this month’s Liver International journal. They advised hepatologists to continue the screening, particularly among patients who had decompensated chirrosis (the most advanced stage of liver disease) before their treatment.

SVR does not automatically reverse the ravages of hep. The researchers said some patients’ livers may have reached a point of no-return before they cleared hep C. Even when a patient’s liver seems to have regressed, not all measures of regression may be accurate, they suggested.

European guidelines recommend that anyone who achieves SVR after having decompensated cirrhosis get a liver ultrasound twice a year thereafter. Those who may have had less cirrhosis but abuse alcohol or suffer from diabetes or other risks should do so too, the guidelines state.

If your gastroenterologist isn’t doing this and you believe you’re at risk, maybe you should ask about getting an ultrasound.

 

 

Hep history and food for thought

ancient greek buildingThe Greek physician Aretaeus of Cappadocia was one of the first people to write about hepatitis. In the 2nd century AD he wrote that hep weakened “the liver’s power of nutrition.” It’s wise to take heed of that ancient advice. Every bit of nutrition that goes into your body gets filtered by the liver, but if you’ve contracted hepatitis C, it may not be filtered well. Some substances are easy on the liver and some are not.

At the top of the not list are alcohol and all drugs with liver warnings. The good news is that the list of excellent nutrition for the liver is long–and tasty. Here are a few of my favorite liver-good foods. There are many more:

  • Avocados help the body produce glutathione, which the liver uses for detoxification.
  • Walnuts contain the amino acid arginine, which detoxifies ammonia. These nuts also contain glutathione and omega-3-fatty acids.
  • Eggs contain choline, which protects the liver from toxins and heavy metals. Although too many eggs can cause heart disease, the usual problem is not the eggs. It’s the bacon or sausages they are paired with.

 

Elimination, Europe’s hepatitis C goal, requires testing

This year’s World Health Organization policy summit on hepatitis C announced the first Hepatitis C European Elimination Manifesto. The manifesto, launched in February, makes elimination of hep C in Europe a public health priority.

Just a few years ago elimination of the disease, anywhere, seemed impossible. But the development of quick-working direct-acting antivirals has changed the landscape for researchers and for people with hepatitis C. Now virtually everyone can be cured.

The World Hepatitis Alliance’s strategic plan for 2016-17 cites that close to seven out of ten people with hep C didn’t even know what HCV was before they were diagnosed. Presumably, once diagnosed almost everyone learns quickly.

But first, they have to be tested.