I-MAK Exec Discuss Gilead Support Path Decision with HCV Advocate, by David Heitz

When Gilead decided this week to curtail access to lifesaving Hepatitis C drugs through its Support Path program, those living with the disease – and itching for a cure – had mixed reactions.

“I’m so glad I live in New Zealand and don’t have to go through all the bullshit some of you do!” said the member of one patient community.

“Insurance companies need to be covering these drugs,” said another. “Gilead is offering the patient assistant program on its dime. There is no obligation on it to maintain this program. We need to push insurers to start covering the treatments. We pay for insurance for a reason.”

In an interview with HCV Advocate, Priti Radhakrishnan of I-MAK (Initiative for Medicines, Access & Knowledge) took issue with the latter statement.

“I disagree with that point of view very strongly,” she said. “I don’t think the Gilead price point is anywhere near what the market can bear.”

I-MAK’s work centers around how and why Gilead has received a patent on sofosbuvir. Some countries were able to jockey in such a way that they have not had to pay outrageous sums based on a patent, like insurers in the United States must. Radhakrishnan explains this process very clearly in this opinion piece she wrote for CNN.

“In many countries across the world, they don’t have an insurance system,” she explained during the interview Sunday evening with HCV Advocate daily. “We need to look for companies to set more equitable pricing. But even here in the U.S., I disagree with that statement. Even as insurance companies take on exorbitant and overpriced drugs, the more the system has to bear that cost. And the cost ultimately is passed along to the consumer.”

You can read Gilead’s letter about curtailing the Support Path program here. Gilead did not respond to a telephone call and e-mail this morning by HCV Advocate.

In explaining its decision, Gilead makes the case that insurers need to begin paying for these drugs. It says it no longer will help patients whose insurers make restrictions based on low fibrosis scores.
So, to answer the questions so many ask: Correct, you can’t get these drugs unless you’re sick enough. And now it’s going to be even harder.

And if you’ve got mental or substance abuse problems and your insurer denies you? Gilead no longer will help in those cases either.

Carrie Yohe Johnson is a person with Hepatitis C in State College, Penn. She can’t get the drugs because her fibrosis score is 0. But her viral load is high.

She got the disease from her mother. Yohe has two children, both HCV-negative. She didn’t know she had the disease when she had the first child; she had a very low viral load when she had the second.
But she’d like to have a third child. Even though only 5 to 6 percent of mothers pass along Hepatitis C during childbirth, it’s still a risk most don’t care to take.

I'm a healthy person. I've never done drugs. I haven't drank alcohol since discovering my illness (not that I really ever was a drinker). I live a healthy life,” Yohe explained. “I've had one partner my whole life (my husband). I have young children and I teach preschool. I constantly worry about accidentally infecting others or whether or not my liver and body will last. Or if this disease will begin to attack my kidneys and heart as it has shown to do…before my insurance finally gives the meds. I don't think it's fair that I have to wait for a cure.”

So what can people like Yohe do? Lobby their members of Congress.

“Citizens can advocate by saying that we want to see transparence in the cost of drug development, and to mandate disclosures,” Radhakrishnan said. “The patient system is really broken, and the companies are way too powerful in terms of reforming laws in their favor. Their needs to be more citizen participation in the process to safeguard patient rights.”

Gilead Limits Enrollment in its Hep C Patient Program to Pressure Insurers

In a bid to push back against payers, Gilead Sciences GILD -0.71% is limiting enrollment to its patient assistance program for hepatitis C drugs, which helps people obtain the Sovaldi and Harvoni treatments when they lack sufficient insurance coverage or the financial wherewithal to get the medicines otherwise.

The drug maker is taking this step after finding that some payers, despite receiving discounts in recent months, have continued to restrict patient access to its hepatitis C medicines. As a result, Gilead has been picking up the cost of the medicines for more people it would like seeking patient assistance, according to a July 1 letter sent to patient groups and community health providers, among others.

A Gilead spokeswoman declined to say how many people are enrolled in its Support Path assistance program, how many may be affected by the change or provide actions taken by specific payers.

Read more...

Canada: BC Transit Campaign to Raise Awareness about HCV Testing

In honor of World Hepatitis Day (July 28th), HepCBC Hepatitis C Education and Prevention Society has launched a month long campaign in seven cities across British Columbia, including Vancouver, Victoria, Richmond, Surrey, Kelowna, Nanaimo, and Prince George.

The goal of this campaign is to increase awareness about hepatitis C testing in British Columbia.

An estimated 80,000 people in British Columbia are infected with hepatitis C. Of those infected, 75 per cent are baby boomers (people born between 1945 and 1975). In addition, an estimated 44 per cent of those infected do not know they are infected.

- See more at: http://smartsexresource.com/health-providers/blog/201507/bc-transit-campaign-to-raise-awareness-about-hcv-testing#sthash.44Y7fG9w.dpuf

Hepatitis C rates in Oregon soar above national average

"About 80 percent of the people who die from hepatitis C in Oregon are between 45 to 64 years old."

When it comes to viral infections in Oregon, hepatitis C is far deadlier than AIDS.

A report out this week shows that infections from hepatitis C remained fairly stable in Oregon between 2009 and 2013 but deaths from the virus climbed steadily over that period. They're now six times higher than deaths from AIDS.

"There are 5,000 people living with HIV in our state," said Dr. Ann Thomas, a public health physician. "There are almost 10 times as many people living with hepatitis C."

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FDA Safety Alert: NSAIDS

The Food and Drug Administration (FDA) has issued a communication strengthening an existing warning label that non-aspirin nonsteroidal anti-inflammatory drugs (NSAIDs) increase the chance of a heart attack or stroke.  This includes prescribed and over-the-counter non-aspirin NSAID medications.

Many people with hepatitis C suffer from extrahepatic conditions of hepatitis C and may take NSAIDs or medications that contain NSAIDs.   Read this FDA communication FDA carefully. Talk with your medical provider about what you should take, how often and what are the alternatives that are safe to take.

http://www.fda.gov/Drugs/DrugSafety/ucm451800.htm

New web site for Cure Hepatitis C is now live

The new web site for Cure Hepatitis C is now live!  Check it out at http://hepatitis-c.curetoday.com/

Also: Check out the Spring 2015 Issue, featuring Alan Franciscus.

Spring 2015

Hepatitis C outbreak Dr. Dipak Desai sentenced to federal prison for fraud

After years of silence, Dr. Dipak Desai spoke publicly Thursday about the 2007 hepatitis C outbreak at his once-busy endoscopy center.

“I’m sorry sir, sorry,” Desai said in an emotional voice, as Senior U.S. District Judge Larry Hicks in Reno was about to sentence him to 71 months in prison for his role in a multimillion-dollar health care fraud scheme tied to the deadly outbreak.

Before that, in a Las Vegas courtroom linked by video conference, Assistant U.S. Attorney Crane Pomerantz spoke of his disdain for the man at the center of the outbreak.

Read more...