Many Hepatitis C Patients Being Turned Away from Treatment

Hundreds of thousands of Americans this holiday season wish for nothing more than to “slay the dragon.”

That’s what they call getting rid of the hepatitis C infection raging inside them. “The dragon” saps their energy as it slowly causes cirrhosis, or scarring of the liver. For many, it has done so for so long that they’ve forgotten what it feels like to be healthy.

Now there are ways to kill hepatitis C, or HCV infection, for good without putting people who have the disease through too much agony in the process. But these cures, which are about 90 percent effective, are expensive.

Doctors, insurance companies, and even governments have cried foul over the high prices of the new medications Sovaldi, Harvoni, and now Viekira Pak. Sick people aren’t getting the treatments they need due to insurance denials and other roadblocks. That angers Dr. Douglas Dieterich, Director of Outpatient Hepatology at The Mount Sinai Hospital in New York City.

“Waiting for cirrhosis to happen to treat HCV is like waiting for cancer to metastasize, or for diabetes to cause complications before treating it,” Dieterich told Healthline. “In reality, all cause mortality, and per patient per year healthcare costs are tripled for patients with hepatitis C, whether they have cirrhosis or not. Clearly, insurers don't understand this. They only tend to worry about the death from liver disease or the liver transplant, which can cost as much as half a million dollars.”

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Hepatitis C is transmitted mostly through blood-to-blood contact. It usually progresses very slowly, and it can take decades before symptoms appear. Of the more than 3 million Americans infected with hepatitis C, many if not most don’t know they have it.

Treatment options other than Sovaldi, Harvoni, and AbbVie’s new Viekira Pak can be extremely uncomfortable. While insurers are quicker to approve more inexpensive treatments such as interferon and ribavirin, the medications can have brutal side effects. Interferon causes nausea and depression; ribavirin ramps up agitation.

Dieterich said he saw patients last week who’ve finished a 24-week course of Sovaldi. “They’re just glowing with health. They had [hepatitis C] for 30 years and they didn’t realize how bad they felt. When it goes away, it’s, ‘Oh my God, I forgot what feeling good felt like.’”

Evidence Shows More People Need Treatment

Lucinda Porter, a nurse, patient advocate, and hepatitis C survivor, points to research presented at The Liver Meeting in San Francisco last month as proof that people aren’t getting the help they need.

Waiting for cirrhosis to happen to treat HCV is like waiting for cancer to metastasize or for diabetes to cause complications before treating it. In reality, all cause mortality, and per patient per year healthcare costs are tripled for patients with hepatitis C whether they have cirrhosis or not.
Dr. Douglas Dieterich, The Mount Sinai Hospital

The annual meeting is sponsored by the American Association for the Study of Liver Diseases (AASLD). In Abstract LB-29, researchers from the U.S. Centers for Disease Control and Prevention (CDC) examined data from 10,000 hepatitis C patients. Using guidelines from the AASLD and the Infectious Diseases Society of America (IDSA), researchers found that two-thirds of the patients had “high” (stage 2 fibrosis, a precursor to cirrhosis) or “highest” (stage 3 or 4 fibrosis) need for the new medications.

“However, treatment costs and other barriers hinder access to treatment,” Porter said. Data from The Liver Meeting are considered preliminary until the abstracts are printed in peer-reviewed journals.

In another study, Abstract 174, CDC researchers examined data from 14,256 patients with chronic hepatitis from 2004 to 2011. Among those with more advanced fibrosis who did not receive treatment, there was “substantial progression to decompensated cirrhosis, [liver cancer], and death,” Porter reported.

Read More: Doctors Battle Insurers for Access to Pricey Hepatitis C Drugs »

She said such findings have become commonplace in the hepatitis C community. “Despite the obvious nature of this, people are being denied HCV treatment. Research such as this reminds us of the critical need to treat everyone who wants to be treated.” 

AbbVie’s New Drug Fails to Lower Pricing Bar

Many doctors and people living with hepatitis C had hoped Viekira Pak, approved by the U.S. Food and Drug Administration (FDA) on Friday, would be priced below Sovaldi and Harvoni. Instead, it’s priced at about $84,000 for a 12-week treatment course, Dieterich said, the same as Sovaldi. Harvoni is priced slightly higher, at $95,000. Harvoni and Viekira Pak do not have to be taken along with interferon or ribavirin, however.

AbbVie, the makers of Viekira Pak have struck a deal with Express Scripts, America’s largest mail-order pharmacy, to provide the drug to Express Scripts members at a reportedly steep discount. The discount is only for patients who enroll in Express Scripts’ services.

The Viekira Pak consists of ombitasvir, paritaprevir and ritonavir, and dasabuvir. It is used to treat genotype 1 hepatitis C. Dosing involves two ombitasvir, paritaprevir and ritonavir once daily, and one dasabuvir twice daily.

Learn More: How Hepatitis C Affects Your Body »

In a clinical trial of 2,308 hepatitis C-infected patients, the drug achieved a cure 91 to 100 percent of the time, even among people considered difficult to treat, according to the FDA. Common side effects included tiredness, itching, nausea, and trouble sleeping.


Alan Franciscus founded the Hepatitis C Support Project in 1997 because “people were just clueless about hepatitis,” he told Healthline. He was cured the old-fashioned way – ribavirin and interferon – about 10 years ago. “Some say it’s a badge of honor, but I sometimes wonder if it was a badge of stupidity,” he said of his 70 weeks of treatment. “I just really wanted to get rid of it.”

He said he sympathizes with people who can’t get approval from their insurance companies for the new treatments. “How depressing that people have waited all this time for these miracle medications and they can’t access them,” Franciscus said. “I want to beat my drum and let people know about the patient assistance programs. If you have a provider who’s willing to go to bat for you it works really well.”

The pharmaceutical companies that make these breakthrough drugs can help people pay for the medications, but it involves jumping through some hoops. Not only are insurers often responding with “not sick enough” when a doctor tries to get patients Sovaldi and Harvoni, but the paperwork to get patients help through Gilead’s patient assistance program is also onerous. (Gilead Sciences is the manufacturer of Sovaldi.)

Sometimes it takes several denials (and several appeals) to get help from Gilead or an insurer, Dieterich said. “It’s a very unpleasant situation. They have shifted the cost to us in terms of us needing to hire more people to advocate for our patients,” he said. “In the long run, it’s saving them money.”

Stigma, Cost of Medication Anger Hepatitis C Community

Gilead has upset others with its pricing strategy as well. The Southeastern Pennsylvania Transportation Authority has filed a lawsuit against Gilead claiming price gouging.

In California, the California Technology Assessment Forum (CTAF) used complicated metrics to determine whether the new medications are cost-effective. CTAF concluded that only Harvoni is worth the money (Viekira Pak had not yet been released). That said, the state would have to spend $3 billion to treat its Medicaid patients and prison population alone. The report concluded that California simply can’t afford it.

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And according to the Pensacola (Fla.) News-Journal, the U.S. Veterans Administration (VA) is rationing Sovaldi and providing it only to those who need it most.

In July, the Senate Finance Committee opened an inquiry into the price of Sovaldi and requested documents from Gilead about how they decided on the drug’s final sale price.

Meanwhile, the public is paying more attention to hepatitis C than ever, since Gilead is running an ad for Sovaldi on NBC Nightly News with Brian Williams. In the ad, a man with hepatitis C says he wants to be cured so that he no longer has to worry about the virus in his blood, or where he put his razor.

Some people with hepatitis C believe the commercial stigmatizes those with the disease, but it can in fact be transmitted by sharing razors, Dieterich said.

Porter said she believes the advertisement does sum up the hepatitis C patient experience. Many people believe it’s a disease you only get from sharing needles, for example.

Some people with hepatitis C feel so stigmatized they go out of their way to repeatedly say they are not a drug user and emphasize that drug use is not the only way to contract HCV. (Many people in the baby boom generation contracted the virus from a tainted blood transfusion.) This winds up shaming former drug users with hepatitis C in the process.

“You can’t make friends with people who have your disease if you’re stigmatizing them about their drug use,” Porter said.

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