After shooting meth put her in a Missouri hospital with six days of bleeding, Heather Surface stumbled out into the January cold last year, still drug-addicted, homeless and unaware that she had a dangerous liver infection.
Two weeks later at a rehab center, she met Bruce Burkett, a wispy-bearded Army vet who’s part social worker, part public health crusader, and a boon to drugmakers for his work in finding patients who need costly, powerful treatments for the viral liver infection hepatitis C.
Burkett specializes in lining up testing and treatment for patients, and most of his work is funded by companies including Gilead Sciences, AbbVie and Merck that have sold almost $50 billion of the new antivirals since they began hitting the market in 2013. Stiff competition has driven prices down and discounts up, and many insured patients have already been treated. That’s been bad news for the market leader, Gilead, which must increasingly find patients through the social service networks that target drug users and the poor. Many patients don’t even know they have the infection, which can take years to show symptoms.
“They are seeing patient volume declines even though there are 1 or 2 million patients out there,” said Michael Yee, an analyst with RBC Capital Markets. “They have to go out and find those 1 to 2 million.”
Gilead spent $141 million last year advertising its hepatitis C drugs in the U.S., according Kantar Media, an ad tracking firm. Meanwhile, government funding for reaching new patients is tight. The Centers for Disease Control and Prevention estimates there may be as many as 3.9 million hepatitis C patients in the country. The agency’s budget to stop the spread of all forms of viral hepatitis — including hepatitis C — was $34 million this year. In 2015, Gilead made more selling hepatitis C drugs in an average day.
“We’re working in a limited-resources situation,” said Corinna Dan, viral hepatitis adviser at the Department of Health and Human Services.
After the U.S. rolled out a plan five years ago to slash new infections by 25 percent by 2020, cases went in the opposite direction, almost doubling to an estimated 30,500 in 2014. The disease can cause liver failure and killed almost 20,000 Americans in 2014.
“The state of Missouri has no money for hep C,” Burkett, who has deluged lawmakers with requests for support of antiviral programs, said over coffee near his office in Columbia. “It’s not a priority with the government.”
Wearing a trucker hat adorned with an American eagle, he has crisscrossed Missouri in a dusty Honda SUV to give talks on the dangers of hepatitis C and get people tested. He helps patients understand their options for treatment under Medicaid and Medicare, as well as corporate programs for the uninsured. About 70 percent of his funding comes from drug companies, and Gilead has put together a national network of employees who work with public health departments and activists like him.
Gilead doesn’t believe its efforts are a substitute for government public health programs, said Gregg Alton, head of corporate and medical affairs.
“It’s much more us providing resources and support,” he said by phone.
Hepatitis C has been big business ever since Gilead exploded out of the gate three years ago with Sovaldi, a pill that can wipe out the virus in 12 weeks with fewer side effects than previous treatments. The company initially charged a list price of $84,000 for a course of therapy. Last year the drug and a successor called Harvoni sold $19.1 billion together globally.
Burkett and other public health workers increasingly look to the company for support. James Galbraith, an associate professor of emergency medicine at the University of Alabama at Birmingham, was frustrated when the CDC denied his request to fund a hepatitis C testing program.
“How do you do it if there are no public funds available?” he said by phone. Gilead answered his call with a grant.
Gilead also gave hundreds of thousands of dollars to improve testing and treatment for hepatitis C at Highland Hospital in Oakland, California. The company helped pay for staff and improvements to an electronic medical records system, said Doug White, an emergency department doctor who runs the program. White said he’s found more than 500 undiagnosed people with the liver virus since 2014.
Meanwhile, the National Institutes of Health turned down a joint request for viral testing funds from Highland and three other hospitals.
“We were baffled,” White said. The NIH didn’t respond to a request for comment.
Burkett, who leads a three-person charity called Hep C Alliance, finds money anywhere he can, including fund-raising poker tournaments. While Gilead supplies about 35 percent of his budget, he also gets checks from Merck, AbbVie, Bristol-Myers Squibb Co., Johnson & Johnson and Express Scripts Holding Co., the St. Louis-based drug benefit manager.
Gilead’s grant program isn’t a commercial strategy, said Amy Flood, a spokeswoman, and its funding agreements state that they don’t reward prescription, recommendation or purchase of the company’s products.
At a session on the outskirts of Hannibal, Mark Twain’s hometown where more than one in five residents are in poverty, Burkett, 61, addressed about 15 women sitting in the cramped chairs of a halfway house.
“How many of you know someone infected with hep C?” he asked in a gravelly drawl, looking around the concrete-walled rec room. Every hand but one went up.
Burkett got the virus while stationed in Europe with the Army, where he says he was a heroin user. Now cured, he has tested 3,356 people across Missouri this year alone, finding 286 infections. Local health officials said they regularly refer inquiries about hepatitis C testing to him.
“It’s an unusual relationship,” Mary Martin, community health manager for the Columbia/Boone County Department of Public Health and Human Services, said in her office.
After what she describes as a troubled childhood, meth made Surface, 36, feel invulnerable. Addiction devastated her health as the drug made her prone to bleeding, and she was infected by using dirty needles. Now sober for more than a year, she believes she took advantage of the system while using drugs and feels the “need to be held accountable.” She’s involved with a conservative-leaning church congregation and voted for President-elect Donald Trump.
Thanks to Burkett’s efforts, she and her husband have been cured with Gilead’s drugs, while her stepdaughter awaits testing results. Burkett said he doesn’t steer people to particular drugs and it’s up to patients and health workers to determine what treatments to use.
“What he does is priceless, and he does something that not a lot of people do,” Surface said. “That can help change people’s lives.”
Gilead is buttressing efforts like these with a sales cadre formed to build relationships with methadone clinics, community health-care centers and advocacy groups. The goal of these community specialists, as they’re called, is to “increase growth in untapped, underserved HCV markets,” according a Gilead job posting.
In Missouri, Gilead representatives worked with the public health department to teach hospitals and doctors about screening, documents obtained by Bloomberg show. The company has advertised jobs for the outreach group in Baltimore, Chicago and Dallas. Gilead nurses and educators provide hepatitis C training for several Boston advocacy groups.
“It’s an odd era where agencies like our own are so dependent on training and resources from pharmaceutical companies,” said Carl Sciortino, executive director of AIDS Action Committee of Massachusetts. Gilead, which gave training to the group, was AIDS Action’s top corporate or foundation sponsor last year, contributing more than $100,000 to the charity’s $10.3 million budget.
The goal of Gilead’s specialists program is to support “existing public health priorities,” said Flood, the company spokeswoman. She called the program “small,” while declining to give specifics. Gilead has spent about $16 million since 2014 on a separate effort that pays for hepatitis C and HIV screening in 17 cities, she said.
In November, Burkett set up a program in the Rio Grande Valley in Texas, where he says the hepatitis C situation is dire. He hopes to finally break free of reliance on pharma money by getting a large nonprofit grant. Yet after 17 years of fighting hepatitis C and losing six friends to the disease in the past two years alone, he sometimes wearies.
The virus will get the attention it deserves “when enough people start dying,” he said. “And that’s around the corner.”