A rendering of the Hepatitis virus. Hepatitis C is a viral infection that damages the liver and can be fatal if left untreated.

Deadly Hep C Going Untreated in Native Communities

Tanya H. Lee

Hepatitis C is raging through American Indian and Alaska Native communities, and the Indian Health Service does not have nearly enough funding to fight the disease, according to a May 26 article in the Journal of the American Medical Association.

“Access to [HCV, or hepatitis C virus] treatment for IHS patients should be a federal priority to fulfill its obligations to tribal nations and American Indian/Alaska Native people,” wrote Joe Finkbonner, Lummi, executive director of the Northwest Portland Area Indian Health Board, and Jessica Leston, Tsimshian, HIV/STI/HCV Clinical Programs Manager for the non-profit tribal advisory organization.

Roughly 120,000 people living on reservations are positive for the HCV antibody. Ten percent of AIAN veterans born between 1945 and 1965 show an HCV antibody-positive seroprevalence, meaning they have been exposed to the virus at some point in their lives, say the authors. Eighty percent of those exposed will not be able to clear the virus out of their bodies on their own and may spread the disease even if they do not have any symptoms.

Hepatitis C is a viral infection that damages the liver and can be fatal if left untreated. From 2009 to 2013, AIAN HCV-related mortality rates increased by 23.2 percent to 12.2 deaths per 100,000 population, more than double the national rate of 5.0 per 100,000.

AIAN people have “both the highest rate of acute HCV infection and the highest HCV-related mortality rate of any U.S. racial/ethnic group,” according to the article, “The Need to Expand Access to Hepatitis C Virus Drugs in the Indian Health Service.”

According to IHS, “Hepatitis C is treated with medications that your doctor can prescribe. Many people can be cured from hepatitis C.”

New direct-acting antiviral treatment regimens “have high rates of achieving sustained virologic response with few contraindications or adverse effects. These advances represent a major shift in treatment options for HCV and may likely reduce HCV-related deaths,” wrote Finkbonner and Leston.

So what’s the problem?

Actually, there are three related problems.

The first is that these antiviral treatments are expensive, well beyond the means of most families to pay even a small part of the costs.

The second is that many state Medicaid programs and insurance companies have sought to control costs by requiring that people already have significant liver damage before they can get the drugs that would prevent such damage. “These criteria present a quandary: earlier treatment can prevent advanced liver disease, but late-stage liver disease is needed to qualify for treatment,” the authors said.

And the third is that IHS, which spends an average of $2,849 per year per patient, compared with the $7,713 per year of treatment of individuals in the U.S. general population receive, simply cannot pay for treatment for all HCV-infected AIAN people. If Medicaid or private insurance (which may have the restrictions mentioned above) will not pay for treatment, the only recourse for patients or their doctors is to ask the drug manufacturer for help, Leston told ICTMN.

The authors compare this situation with that of the U.S. Department of Veterans Affairs. After Congress allocated more than $1 billion for HCV treatment for veterans and drug manufacturers were convinced to lower the price of the drugs, the VA “issued guidance that all patients with HCV should be treated, regardless of stage of liver disease,” they note.

IHS, which has a budget of $4.6 billion to serve 2.2 million people, compared with the VA’s $59 billion budget to serve 9 million veterans, has not received supplementary funding for HCV treatment and must rely on limited Medicaid and manufacturer-based Patient Assistance Programs for access to HCV drug therapies, said the authors.

The American Association for the Study of Liver Diseases and the Infectious Diseases Society of America recommends providing HCV drug therapies for all patients with HCV except for those with other, immediately life-threatening illnesses.

Congress may need to step in with a special allocation to pay for HCV treatment for IHS patients, as it has done for veterans. “Human rights and health equity are not simply vague ideals—they are guiding operational principles for health care institutions, health care business, and governments—embodied to create a system of equity, especially for marginalized populations,” wrote Finkbonner and Leston.

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