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The Cherokee Nation wants to reverse the ‘silent epidemic’ of hepatitis C

March 27, 2016 at 12:00 PM EDT
The Cherokee Nation, one of the largest Native American tribes, has become the first community in the U.S. to set a goal of eliminating hepatitis C from its population. Tribe officials plan to screen 300,000 members, whose prevalence of infection for the virus is five times the national rate, and treat them with drugs that have proven 90 percent effective. NewsHour’s Stephen Fee reports.


In Oklahoma, the Cherokee Nation has waged war against hepatitis C.

With infection rates among Cherokee Indians nearly five times higher than other racial or ethnic groups in the U.S., the group has become the first community in the country and one of only a few in the world to set a goal of completely eliminating the virus from its population.

The virus, which is most commonly transmitted through the sharing of needles, can lead to liver damage, cancer and even death.

That’s why Cherokee Nation officials began working with the University of Oklahoma, the Oklahoma State Health department and federal health officials to launch an initiative to tackle hep C by boosting screening efforts and using the latest pharmaceutical research.

Because the federal government is responsible for providing health care to all American Indians, more members of the Cherokee Nation and other native groups pass through tribal hospitals and outreach clinics.

Dr. Jorge Mera, Director of Infectious Diseases for the Cherokee Nation, says that makes it easier to screen nearly everyone for hepatitis C, a cornerstone of the project.

“Most of our patients will come in through the system at some point,” Mera said. “We will be able to screen them, and once we screen them and detect that they’re positive, engage them in care and hopefully treat them and cure them.”

One distinction being made is testing of all patients over age 20, a departure from the former strategy of singling out patients who had a history of intravenous drug use.

“We’re not doing screening based on risk factors, first because we know it doesn’t work well,” Mera said. “Many providers will not ask risk factors with patients. They don’t have the time to do it or it is a sensitive issue.”

Mera said he hopes the partnership will lead to discoveries that will be useful nationwide.

“We won’t be able to extrapolate what we do or find to every medical scenario in the United States, but I think everybody will learn a little bit from some of the things we did.”

Read the full transcript of this segment below:

STEPHEN FEE: Gaye Wheeler is sixty-one years old and lives on this quiet street in the town of Fort Gibson, Oklahoma. She’s a member of the Cherokee nation, a federally-recognized Indian tribe with 320 thousand members.

Wheeler works as a substance abuse counselor, helping men and women who struggle with addictions to drugs and alcohol. It’s a struggle she knows well; she started drinking at age 14.

GAYE WHEELER: “Then I graduated from high school and moved to Tulsa. And that’s when I started the intravenous drug use at the age of 18. I started off with crystal meth. That was the big thing then. And then I did cocaine. And mainly I did speedballs, heroin and cocaine.”

STEPHEN FEE: In the 1990s, Wheeler went to prison twice for drug-related offenses.

GAYE WHEELER: “When I came out the last time, I decided, you know, I had to do something different.”

STEPHEN FEE: She stopped using drugs, went to recovery meetings, regularly attended church, and stayed sober. Then last year, after a routine physical, she found out she had Hepatitis C. And so did a lot of her friends.

GAYE WHEELER: “Everybody I knew, everybody I ran with, everybody I used with.”

STEPHEN FEE: Hepatitis C is a virus that affects the liver and can lead to liver failure, cancer, and even death.  But half of Americans who have hep c don’t even know it, in part because they’re not screened or diagnosed.

JORGE MERA: “It’s a silent epidemic in many ways.”

STEPHEN FEE: Doctor Jorge Mera is the director of infectious diseases for the Cherokee nation.

JORGE MERA: “Hepatitis C is a virus that the main form of transmission is intravenous drug use. That’s number one in the United States. It doesn’t produce symptoms for many years and even when it does, unless the providers are very familiar with hepatitis C, they tend to blame the symptoms on something else.”

STEPHEN FEE: Hepatitis C is a growing health crisis in the United States, now affecting three-and-a-half million Americans.

The problem is particularly acute for Native Americans and the Cherokee nation, where hep c infection rates are nearly five times the national average.

Native Americans are twice as likely to die from Hepatitis C than other Americans. That’s part of the reason the Cherokee Nation has made eliminating hep c one of its top public health priorities.

Alarmed by the disease, Cherokee officials in 2012 began working with the University of Oklahoma, the Oklahoma state health department, and eventually federal health officials to design a hep c elimination program that launched late last year.

Bill John Baker is principal chief of the Cherokee nation.

BILL JOHN BAKER: “Hep c has been– almost like the big C word of when you found out you had it, it was a death sentence.”

STEPHEN FEE: In addition to the health impact, Baker says the disease takes an economic toll.

BILL JOHN BAKER: “Most folks can’t work. They can’t function as the disease progresses. It’s a tremendous financial burden.”

STEPHEN FEE: The Cherokee health system serves 130-thousand Native Americans in Northeastern Oklahoma at its Main hospital and at eight outreach clinics. Like many Indian health systems, care is free for tribal members.

Doctor Mera says that makes it easier to screen nearly everyone, a cornerstone of the hep c elimination project.

JORGE MERA: “Most of our patients will come in through the system at some point. We will be able to screen them, and once we screen them and detect that they’re positive, engage them in care and hopefully treat them and cure them.”

STEPHEN FEE: Just imagine a skeptic watching this story, maybe thinks, you know, why should the Cherokee Nation be spending its resources on trying to fight the disease when they should really be going after drug use?

JORGE MERA: “Part of our hepatitis C program is to evaluate the need and visibility of starting opiate substitution clinics which is — it tackles the — it diminishes I.V. drug use. Definitely prevention is the answer, the long-term answer.

Right now we have to put the fire out because there’s a lot of people who are infected. And those people will develop liver — end-stage liver disease if we don’t treat ’em today.”

STEPHEN FEE: The Centers for Disease Control and Prevention helped design the Cherokee hep c program, which includes screening and treatment, as well as public information campaigns and a program to train healthcare providers to treat the disease.

Doctor John Ward directs the CDC’s viral hepatitis division. He says it’s not entirely clear why Native Americans are more likely to die from hep C.

JOHN WARD: Some of it could be under-recognition which is a problem throughout the country. They also have other co-factors that when brought together with hepatitis C accelerate the progression of their liver disease, and those other conditions include alcohol use and obesity.

STEPHEN FEE: The CDC recommends hep c screenings for all baby boomers — everyone born between 1945 and 1965…now aged 50 to 70.

But Doctor Mera discovered half of his Hepatitis C patients are younger than 50.

So now, under the tribe’s hep c elimination program, anyone over age 20 who comes through the Cherokee health system — for any reason — is screened for hep c, regardless of other risk factors.

JORGE MERA: We’re doing age targeted screening. We’re not doing screening based on risk factors, first because we know it doesn’t work well. Many providers will not ask risk factors with patients. They don’t have the time to do it or it is a sensitive issue.

STEPHEN FEE: When Gaye Wheeler was diagnosed as part of the hep c elimination program, she told a nurse she was worried about the treatment. Friends — and a close male relative — had experienced debilitating side effects like fatigue and depression.

GAYE WHEELER: I said, well, am I, what medication am I going to have to take? And she said well there’s new medications. And I was like, okay. But you know in my own mind after I hung up, I thought, wow, is this going to be like what he had to go through?

STEPHEN FEE: In addition to those side effects, the main drugs used to treat hep c until a few years ago — Interferon and Ribavirin — cured hep c only about half the time…and many patients had other medical conditions that prevented them from taking those drugs.

JORGE MERA: When I was treating patients in the interferon era, I could treat 10 percent of the patients, roughly ten percent of the patients that came to my office with hepatitis C. Best case scenario I could cure 50 percent. Best case scenario.

STEPHEN FEE: In 2014, the food and drug administration approved a new class of medications to treat hep c. These drugs are taken orally, once a day, have few side effects — and a 90-percent cure rate.

JOHN WARD: We have this powerful intervention now in our hands and our challenge as a nation is to bring together the populations who can benefit from these treatments together with those treatments and really have an excellent opportunity of wiping out this disease.

STEPHEN FEE: But the drugs are very expensive. Gaye Wheeler took a medication called Harvoni – its’ manufacturer, Gilead Sciences, charges 63-thousand to 94-thousand dollars for an 8 to 12 week treatment course.

Wheeler’s medication came at no cost to her. Pharmaceutical companies offer substantial discounts to Cherokee patients, and the tribe uses Medicare and Medicaid dollars to cover remaining costs.

But even with discounts, a bipartisan senate finance committee report last year said Gilead’s drug prices were putting “a large burden” on Medicare, Medicaid and other government health programs.

In a statement to the NewsHour, Gilead said the price of Harvoni reflects the cost of “innovation,” and that Harvoni and other therapies “offer a cure at a price that significantly reduces hepatitis c treatment costs.”  The company also said it offers “deep government discounts to eligible health programs.”

Gilead has donated one-and-a-half million dollars to the University of Oklahoma for its part in assisting the Cherokee hep c elimination program.

Doctor Mera says with competing hep c drugs in the pipeline from other pharmaceutical companies, he expects medication costs to come down.

Do you worry at all that some of the conclusions you’ll reach here, aren’t gonna be applicable outside of Cherokee Nation because most people don’t have the kind of medical coverage that people here in Cherokee Nation do?

JORGE MERA: “We won’t be able to extrapolate what we do or find to every medical scenario in the United States. But I think everybody will learn a little bit from some of the things we did. Like, for example, we expanded age targeted screening to– from 20 to 69. The recommendations right now are only baby boomers in the U.S.

STEPHEN FEE: John Ward from the CDC says the Cherokee program could become a national model for eliminating hep c.

JOHN WARD: Well the number one lesson we can learn from the Cherokee nation is the power of political commitment to tackling this problem.

STEPHEN FEE: So far, the Cherokee program has treated almost 300 hep c patients — and of those who’ve completed treatment and finished evaluation, 96 percent are disease-free, including Gaye Wheeler.