Hepatitis C virus (HCV) is a chronic infection that can cause liver damage and liver cancer. About 20,000 persons die from HCV each year. Hepatitis C is a preventable and curable disease. So why are so many people dying?
Most HCV falls on baby boomers – those born from 1945 to 1965 – many of whom have unknowingly been living with the infection for many years. Persons infected with HCV usually have no symptoms and do not know they are infected. Baby boomers may have been infected during medical procedures decades ago when injection and blood transfusions were not as safe as today. These infections from many years ago are now showing up as long term liver damage. Damage that can be stopped and even reversed with diagnosis and treatment. HCV testing is recommended for all adults born from 1945 through 1965, regardless of risk factors
For more testing recommendations and ways HCV can be transmitted please visit cdc.gov/hepatitis/hcv/cfaq.htm
In order to better understand HCV among NW Tribes, Project Red Talon performed Electronic Health Record (EHR) audits to determine caseload and awareness of HCV disease in the Portland Area. The project identified persons in EHRs with a probable HCV diagnosis, age, antibody and RNA test results, genotype, and liver function and platelet test results (to determine stage of liver disease). 635 unique patients were found with an HCV diagnosis, and 382 (60%) were born between 1945 and 1965. This represents only a small fraction of the total number of baby boomers in the Portland area that have been screened 2444/6812 (35.8%), despite the CDC recommendation that all people born between 1945 and 1965 get tested for hepatitis C.
New Cures. HCV has historically been difficult to treat, with highly toxic drug regimens and low efficacy (cure) rates. In recent years, however, medical options have vastly improved: current treatments have almost no side effects, are oral-only, and have cure rates of over 90%.
Curing a patient of HCV greatly reduces the risk of liver cancer and liver failure. New drug regimens have made early detection and treatment of HCV critical, although the main barrier to treatment has been cost. The new medications have been among the most expensive in history, although private and public insurance companies are beginning to cover the two to three month oral regimen and help cure this chronic disease.
It has been estimated that the HCV caseload in Indian Country is 120,000 patients. The best estimates of how many patients are being treated does not come close to meeting clinical need and preventing HCV-related deaths, although by treating at the primary care level, we can begin to eradicate this disease.
Treating Chronic Hepatitis C at the Lummi Tribal Health Center. Early in 2016 the Lummi Tribal Health Center began developing a program to treat chronic HCV infection at our primary care clinic. Rates of new HCV infection were found to be 40 times higher than the neighboring non-native community, which unfortunately parallels national data for AI/AN people. The high incidence of new HCV infection is largely secondary to high numbers of persons who inject drugs within AI/AN communities. On an individual level, untreated HCV can cause significant long-term health problems including cirrhosis and liver failure. From a public health perspective, rates of new infection will continue to rise unless a considerable number of people with chronic HCV who continued to inject drugs are treated. We therefore adopted a treatment-as-prevention approach in developing our program.
For many decades, treating hepatitis c was the work of specialists. However, in the last five years, the introduction of new direct acting antiviral (DAA) medications have allowed primary care providers to begin treating hepatitis C. These medications have been shown to cure hepatitis C at rates above 95%, and have safety profiles equal to or better than many other medications routinely prescribed in primary care. As we looked closely at developing our program, it became fairly clear that we already had a significant amount of institutional knowledge to support this effort given decades of experience treating other chronic diseases such as diabetes.
The experience in case management, managing patient registries, ensuring close follow up for routine labs, and monitoring medication compliance were skill sets already in place, which could be redirected to a different disease state.
The primary barrier to implementing our program was provider knowledge and comfort in prescribing the new DAA medications. We elected to send one of our physicians to the University of New Mexico, which is an opportunity offered to all IHS, tribal and urban providers, for a two-day HCV training.
Additionally, two providers completed the University of Washington Hepatitis C Online course (http://www.hepatitisc.uw.edu/) which is free to the public and provides continuing education for clinicians. This course was comprehensive and tailored to providers of all types, including RN’s and pharmacists. We continually reference HCVGuidelines.org which provides the most up-to-date treatment protocols for HCV, and is managed by the AASLD (American Association for the Study of Liver Disease) and IDSA (Infectious Disease Society of America). In addition to these resources, we now participate in Project ECHO (Extension of Community Healthcare Outcomes) with the University of New Mexico (UNM). Project ECHO is a bi-monthly 1 hour web-based conference call for didactics and the opportunity to present patient cases to UNM specialists for treatment recommendations. In the State of Washington, participation with Project ECHO is required for Medicaid coverage of the DAAs.
A secondary barrier to implementing our program was accessing the DAAs given their high cost and complex prior-authorization process. Fortunately, in the State of Washington, Medicaid will approve payment for nearly every patient with chronic HCV (as of June 2016). This includes patients who are actively injecting drugs and/or using alcohol.
Other private insurance companies will also cover the DAA’s. The prior authorization period has taken between 6-8 weeks and we are counseling patients about this at their initial visit.
As of today, we have nearly completed treatment with our first patient and have initiated treatment with a handful of others. Our goal is to treat over 50 patients in 2017. Many other tribal clinics around the country have also started treating hepatitis C, and are beginning to see the possibilities. From our experience thus far, treating hepatitis C is no more complicated than treating other chronic diseases like diabetes. While it may seem like a daunting task at first, with proper training and cooperation with specialists, we are proving that hepatitis C is treatable in our communities, by our own providers.
Justin Iwasaki, MD, MPH Executive Medical Director, Lummi Nation
David Stephens, BSN, RN HCV Clinical Services Manager, Northwest Portland Area Indian Health Board
Jessica Rienstra, LPN Hepatitis C Project Coordinator, Lummi Tribal Health Center
Ron Battle, MD Primary Care Physician, Lummi Tribal Health Center
Jessica Leston, MPH HIV/STI/HCV Clinical Programs Director, Northwest Portland Area Indian Health Board