Make us your home page
Instagram

Today’s top headlines delivered to you daily.

(View our Privacy Policy)

Costly hepatitis C drug worries insurers, patients

ST. PETERSBURG — When he ran one of the area's first clinics for AIDS patients, Dr. Bob Wallace dealt with a frustrating dilemma: High price tags were keeping promising new medications out of reach.

More than 25 years later, that's no longer the case for many HIV/AIDS patients in the United States, thanks in part to publicly funded drug-assistance programs. But Wallace, now a part-time Pinellas County Health Department doctor nearing retirement, is watching a similar problem play out again — only this time with hepatitis C patients.

A new drug called Sovaldi has been hailed as a breakthrough in the fight against hepatitis C, a chronic liver disease that kills more people in the United States each year than AIDS. Until now, the standard treatment has cured fewer than half of patients. It, too is costly, but it has such painful side effects that many don't even try it, or can't complete it.

But Sovaldi's eye-popping price — $84,000 for a standard 12-week course — has left insurance companies and state Medicaid directors struggling over how to pay, especially as diagnoses increase. And while uninsured hepatitis C patients may be able to get financial help through the drugmaker, many of them don't even know where to start — not to mention they'd still have to find a specialist willing to see them.

"I call this the big pink elephant in our living room," Wallace said.

The well-publicized controversy over the price has prompted a broader debate over how to handle future blockbuster specialty drugs with similarly high price tags.

An activist group, the AIDS Healthcare Foundation, has asked state Medicaid directors to leave Sovaldi off their lists of approved medications to force drugmaker Gilead Sciences to lower its price. The most expensive AIDS combo drug on the market, the foundation notes, is also manufactured by Gilead but costs $80 per pill — a fraction of the $1,000-a-pill Sovaldi.

And recently, a prominent group of medical experts working with the insurance-affiliated California Technology Assessment Forum called Sovaldi a "low-value" drug, with panelists recommending doctors prescribe the drug first to those who need it most.

"What I really wish for is that we could push back on the price rather than have to make patients wait or be denied,'' Dr. Rena Fox, a professor of medicine at the University of California at San Francisco, said at the meeting. "Since we don't have (that) ability, then we have to decide which patients are the most urgent to be treated now."

But patients don't want to wait until they get worse, said Ryan Clary, executive director of the consumer group National Viral Hepatitis Roundtable. They also may fear spreading the infection.

"It doesn't provide much of an incentive to get tested only to be told the cost (of treatment) is too high," Clary said.

• • •

Hepatitis C, a virus infecting an estimated 2.7 million people in the United States, including 300,000 Floridians, is transmitted through blood. People at the highest risk are intravenous drug users and those who got blood transfusions before 1992. In some cases, patients were infected by unsanitary body piercing or tattoos. In rare cases, hepatitis C can be sexually transmitted.

Baby boomers are five times more likely than other adults to be infected. That's why the federal Centers for Disease Control and Prevention in 2012 began recommending that all people born between 1945 and 1965 get tested.

Infected people may have no symptoms for decades before the disease starts to damage the liver. Left unchecked, it can lead to cancer or organ failure.

Traditional hepatitis C treatment includes injections of a drug called interferon, lasts 48 weeks and can cause significant flulike side effects, said Dr. Eliot Godofsky, an infectious disease specialist in Bradenton. The cost can be $60,000 to $90,000, according to J. Mario Molina, chief executive officer of insurer Molina Healthcare, which manages Medicaid patients in nearly a dozen states, including Florida.

But because of the side effects and below-50-percent cure rate, few patients try the old treatment. Now, patients and doctors are going to want access to the new drug, Molina said.

While he believes Medi­caid insurers will take a disproportionate hit, many hepatitis C patients have no access to any health insurance.

Government researchers say these patients are most likely to be middle-aged men with low incomes. They can't afford private insurance, they're too young for Medicare, and they don't typically qualify for Medicaid in states like Florida that refused federal funds to expand eligibility for the insurance program for the poor.

Bruce Lee, 53, of St. Petersburg was diagnosed with hepatitis C five years ago. Uninsured and out of work, he went to the Pinellas Health Department, only to learn doctors there could not treat hepatitis C patients. He was referred to a support group.

"We're kind of lost," Lee said.

• • •

Gilead has begun advertising Sovaldi directly to consumers. The drug's cost reflects the investment in getting it to market, a spokeswoman said.

Besides, she noted, the alternatives, such as cancer treatment or organ transplantation, are far more expensive.

"It's important to think about the cost of a cure in the context of the cost of failed therapy or the downstream costs of liver cancer,'' spokeswoman Cara Miller said.

Godofsky, the Bradenton infectious disease specialist, noted Gilead has a limited time to make its money on Sovaldi before competing drugs enter the market.

"Competition tends to bring the prices down," he said. "The pace of new drugs for hepatitis C is developing very, very rapidly."

Private insurers are paying for Sovaldi in certain cases. Florida Blue, for instance, says it pays based on whether the patients meet new clinical guidelines. Godofsky, who has put more than 30 patients on Sovaldi since January, said, "our track record getting (insurers) to pay has been very good."

But as demand grows, the cost of the drug could be too much for many insurers, especially in Medicaid managed-care programs, Molina said. He has asked states, including Florida, to reimburse Medicaid insurers for Sovaldi patients separately this year since the cost of the drug was not built into the contracts.

Medicare, the federal program for seniors, likely will soon start to feel the pressure too as more baby boomers age into the program, Clary said.

Lee, the St. Petersburg man with hepatitis C, said he can't conceive of getting the expensive new drug when he couldn't even get the old one. So he's looking forward to a new health clinic for lower-income people that Dr. Wallace, whom he met at the county Health Department, wants to open.

Wallace hopes to help patients like Lee get into clinical trials or other programs to pay for care. Lee has been suffering increasing bouts of chills, nausea and exhaustion, but like others in his predicament, can find no relief.

"There's just not much for us," he said.

Jodie Tillman can be reached at [email protected] or (813) 226-3374.

Costly hepatitis C drug worries insurers, patients 03/23/14 [Last modified: Monday, March 24, 2014 10:47am]
Photo reprints | Article reprints

© 2017 Tampa Bay Times

    

Join the discussion: Click to view comments, add yours

Loading...
  1. 7 creepy podcasts to get you in the Halloween spirit

    Blogs

    Halloween is all about scary stories. The holiday itself is based on a compilation of creepy tales from history going back thousands of years.

    Television network AMC recently debuted an immersive new podcast, Deadly Manners.
  2. Police: Before a shot was fired after Spencer's UF speech, men gave Nazi salutes and chanted about Hitler

    Crime

    Gainesville police have arrested three men they say are responsible for the shooting after Richard Spencer's speech at the University of Florida on Thursday.

    Texas men Tyler Tenbrink, 28; William Henry Fears, 30; and Colton Gene Fears, 28 all face attempted homicide charges for a shooting following Richard Spencer's speech at the University of Florida. (Gainesville police)
  3. Koetter: QB Jameis Winston will start Sunday vs. Bills

    Blogs

    After five days of uncertainty, Jameis Winston will be starting at quarterback on Sunday as the Bucs play at Buffalo, coach Dirk Koetter announced Friday afternoon.

    Bucs QB Jameis Winston, shown against the Patriots two weeks ago, will start Sunday at Buffalo after being sidelined with a shoulder injury last week. Dirk Koetter announced that he was starting after watching him throw at practice Friday.
  4. Florida's 'Turtle God' is ailing. What happens to his remarkable collection of specimens?

    Wildlife

    OVIEDO — In a small town about five miles from the University of Central Florida there stands a two-story yellow house built in the 1920s. A modest sign mounted on the wall next to the front door says, "Chelonian Research Institute."

    The main room at the Chelonian Institute in Oviedo Florida. - Peter Pritchard sounds British but he's lived in Florida for five decades, running the Chelonian Institute in Oviedo Florida, which holds the world's largest collection of turtle specimens (some of them bones or shells, some of them live turtles or tortoises). Time magazine has declared him a hero of the planet and other turtle experts say he is to turtles what Dian Fossey was to gorillas. He's been instrumental in helping other species, too, including the Florida panther. He has traveled the world studying turtles.
  5. Photos: Maroon 5's PJ Morton slides into Tampa for an electric set at Crowbar

    Blogs

    While the rest of Tampa was off partying with Bruno Mars at Amalie Arena, a much smaller group of fans were getting down with Maroon 5 at Crowbar.

    PJ Morton performed at Crowbar in Tampa on Oct. 19, 2017.