For 9 out of 10 American Indians, treatment led to a hepatitis C cure.
For most of the 3.5 million Americans living with a hepatitis C infection today, the promise of a cure is an empty one unless patients can get proper care. And deaths from hepatitis C keep rising, surpassing deaths from HIV.
Now, in a successful pilot program by the Cherokee Nation Health Services of northeastern Oklahoma, a May 2016 Centers for Disease Control and Prevention (CDC) report shows that curing hepatitis C is possible not only in clinical trials, but also in the larger population — even in remote and impoverished areas.
Local Hepatitis C Screening Success
American Indians and Alaska Natives have the highest rates of death from hepatitis C of any group in the United States, and also the highest number of new hepatitis C infections, according to the CDC, says Jorge Mera, MD, lead study author and director of infectious diseases at Cherokee Nation Health Services, though he says it’s not known why. “We made a great effort to detect hepatitis C virus-positive patients," he says. "Hepatitis C virus is known as the invisible epidemic — we tried to make it visible.”
To get more people screened, the health services implemented an electronic health record reminder to target everyone born between 1945 and 1965. The automatic alert prompted medical providers if the patient they were seeing that day was due for a hepatitis C screening test based on the patient's birthdate. This pilot program resulted in a fivefold increase in first-time hepatitis C testing between 2012 and 2015, from 3,337 people to 16,772 and included 131,000 American Indian people, mostly from rural northeastern Oklahoma.
The program educated healthcare providers on how important it is to identify these patients as early as possible, and to offer them treatment. It also informed them about the many ways people are exposed to hepatitis C, including by using or having used IV or intranasal drugs, having been incarcerated, or having received a blood transfusion before 1992. The CDC recommends testing for all people with such histories.
Progress in National Hepatitis C Screening
A report on a second, national initiative by the Indian Health Service (IHS) that ramped up hepatitis C testing in a similar way was also published in May 2016 in the CDC's Morbidity and Mortality Weekly Report (MMWR). As of June 2015, the number of people they had screened overall increased from 14,402 to 68,514 over three years, varying by region from 31 to 41 percent of people in the high-risk age group.
“The Indian Health Service’s screening rates for American Indian and Alaska Native patients in the [1945 to 1965] birth cohort have more than tripled since the national recommendations were released, greatly increasing the potential for early detection and follow-up for our patients living with hepatitis C infection,” says Susan Karol, MD, Indian Health Service chief medical officer and member of the Tuscarora Indian Nation in Niagara Falls, New York. The Indian Health Service provides healthcare for 1.9 million American Indian and Alaska Native people, including 566 different recognized tribes.
A Second Test for Active Hepatitis C
“Once patients were detected as HCV-positive, a confirmatory viral blood test was performed to make sure they had an active infection,” says Mera about his hepatitis C program. This test looks for RNA that’s proof of ongoing hepatitis C virus replication in the patient’s blood.
Of the 715 people who tested positive on the first screening test, 68 percent had an active infection. They were referred to one of five hepatitis C virus clinics set up by Cherokee Nation Health Systems, which had primary care providers who were specifically trained through the Extension for Community Healthcare Outcomes (ECHO) program. Outreach also included home visits to people who had hepatitis.
Access to Hepatitis C Drugs That Can Cure
A high proportion of the people who had an active infection — 57 percent — received antiviral drug treatment in this pilot program. Ninety percent were cured of hepatitis C.
“We don’t deny treatment to anybody because they’re depressed or have an alcohol dependence medical problem,” says Mera, though this is often a barrier to getting approvals for antiviral treatment. “We do offer and encourage them to be enrolled in a behavioral health program to address the other medical conditions. As long as they’re following up with the medical appointments and interested in HCV treatment, we will treat their hepatitis C virus.”
David Rein, PhD, program area director of the public health analytics division of NORC, an independent research institution at the University of Chicago, says access to hepatitis C care is improving for some. “In March, the U.S. Veterans Administration dropped all restrictions on treatment and began to provide treatment to any veteran in its system who is infected with the virus, regardless of how far the disease has progressed. Unfortunately, the VA is the exception and not the rule. Many state Medicaid programs and private insurance plans still place unnecessary barriers on treatment access.”
Coverage to pay for medications is a barrier for many people with hepatitis C, notes a May 2016 editorial in The Journal of the American Medical Association.
The key to success, Mera says, is being relentless. “We have a wonderful group of case managers dedicated to hepatitis C treatment procurement,” he says. “They will work with the third party payers such as Medicaid, Medicare, and private insurance, and also with the patient assistance programs. Our case managers will not take no for an answer very easily, and will exhaust all the possibilities they have to obtain the medications.”
How to Cure Hepatitis C Across the United States
The three steps to a hepatitis C cure are to:
Get screened to see if you’ve ever been exposed to the hepatitis C virus
Get tested for active viral infection
Get effective drug treatment
Yet half of Americans infected with hepatitis C don’t know they have it, while many of those who do know can’t get access to care or can’t pay for the antiviral medication they need.
A plan to cure hepatitis C is important because cases of infection have increased more than 2.5 times from 2010 to 2014, and deaths from hepatitis C are on the rise, exceeding 19,000 per year, according to the CDC's U.S. viral hepatitis surveillance report, published in May 2016.
“Acute cases, which occur when a patient is first infected with hepatitis C, are increasing at an alarming rate, likely due to higher rates of injection drug use,” says Dr. Rein. But this group of people is not likely to develop symptoms of liver dysfunction for several decades.
“The record number of hepatitis C deaths that the CDC reported for 2014 is almost exclusively related to people who were initially infected with the disease in the 1960s, ‘70s, and ‘80s who developed chronic infections which gradually destroyed their livers over the course of decades,” he explains.
Rein and his colleagues had predicted in 2010 that deaths from hepatitis C would increase to 18,200 annually by the year 2020, peak at 36,000 in 2033, and kill more than one million Americans by the year 2060 if we didn't take action to prevent it. But the sobering reality is that the U.S. case numbers have already exceeded that prediction, with more than 19,000 cases in 2014.
“I still believe that is what will happen if nothing is done to address the epidemic,“ Rein says. “However, I’m both hopeful and confident in our healthcare system, and I believe that we’ll see vastly expanded testing and treatment, which will lead to dramatic reductions in deaths from hepatitis C in the years to come.”
More people, especially those born between 1945 and 1965, need to be tested for the hepatitis C antibody, he says. “Simply disseminating guidelines and providing reimbursement for testing is insufficient to assure that doctors test their patients. Interventions are needed to prioritize testing for hepatitis C.”
The Cherokee Nation group is now working with the CDC on a model that experts hope can be expanded throughout the country to lead people effectively from screening through to a hepatitis C cure.
What can help the model succeed? According to Mera, support, commitment, and trust:
Political support (in the Cherokee Nation program, from the tribe’s chief and council)
Commitment and trust from the administration to do the right thing to eliminate hepatitis C
Dedicated and motivated team members who include primary care providers (nurse practitioners, physicians, pharmacists), lab technicians, nurses, administrators, behavioral health personnel, case managers, and clerks who understand the importance and urgency of hepatitis C screening and a cure
“My wish would be that patients would ask their medical providers to test them for HCV if they think they could have been exposed. This would increase screening, the first step in visualizing the invisible epidemic,” says Mera.