Judith Feinberg, MD, has a joint appointment at the West Virginia University School of Medicine as a professor of Behavioral Medicine & Psychiatry and Medicine/Infectious Diseases. She is also the Past Chair of the Board of Directors of the HIV Medicine Association and is a Vu Advisory Committee Member.
Q: A recent Hepatology paper, “County-Level Variation in Hepatitis C Virus Mortality and Trends in the United States, 2005-2017,” found that the Appalachian region had one of the highest Hepatitis C-related death rates among people under 40 years of age as well as an increase in overall mortality rates (compared to a decrease in mortality rates nationwide). Based on your working experience in West Virginia, what factors do you think have contributed to this trend?
This is a multifactorial problem. In most parts of West Virginia, Hepatitis C is the consequence of injection drug use. The Hepatitis C epidemic tracks both in time and place with the drug epidemic, with a marked correlation with overdose fatality rates. There is also a relatively limited awareness among providers that people who inject drugs (PWID) are so vulnerable to Hepatitis C. PWID are often aware of the risk, but not of the long-term consequences, such as cirrhosis of the liver, liver cancer (hepatocellular carcinoma), and other negative health outcomes related to Hepatitis C.
In rural communities, access to Hepatitis C diagnosis, care, and cure is extremely limited because there are so few specialists such as gastroenterologists, hepatologists, and infectious diseases physicians. Since well-tolerated curative regimens have been developed in the last six years or so, primary care providers, including nurse practitioners, physician assistants, and physicians, who graduated before 2014 are not really aware that Hepatitis C is curable with minimal toxicity. It’s partly a lack of knowledge of current therapies and experience diagnosing and treating Hepatitis C, but also the burden of competing health priorities. Even before COVID-19 disrupted routine medical care this past year, West Virginia ranked #1 or #2 in some of the most intractable chronic diseases such as heart disease, stroke, cancer, diabetes, morbid obesity, and lung disease, which kept primary care providers pretty busy. For example, in the southern coalfields where much of our research has been centered, you will see banners across Main Street announcing the coming Saturday’s black lung screening clinic.
Q: Even before the COVID-19 pandemic, several policy analysts noted challenges to providing adequate clinical and prevention services in Appalachia. Can you describe some of the challenges in providing these services and how they may contribute to increased rates of infectious diseases like HIV, Hepatitis B, and Hepatitis C in the region?
PWID are vulnerable to all three of those chronic viral infections. For at least the last ten years, West Virginia has had the highest rate of acute Hepatitis B in the nation. We also routinely have the highest or second highest rate of acute Hepatitis C in the U.S. We had HIV outbreaks across 15 southern coalfield counties in 2017 and a more substantive outbreak in Huntington in 2019. West Virginia is also seeing a growing number of new HIV diagnoses in the capital, Charleston, as well as a scattered increase of cases throughout the state. In Kanawha County where Charleston is located, there were 35 injection drug use-associated HIV cases in 2020, only one less than the 36 injection drug use-associated HIV case count in all of New York City in 2019. 35 cases do not sound like a lot if you live in New York or San Francisco. However, in places as small and sparsely populated as West Virginia, 35 cases in one county are a lot.
PWID often cannot access routine care because of stigma or because they haven’t signed up for West Virginia Medicaid yet, even though we have Medicaid expansion. In addition, primary care providers and health systems everywhere in the state, similar to the rest of the country, have been overwhelmed by the COVID-19 pandemic.
Stigma is a significant obstacle to medical treatment. I’ve witnessed how PWID have been poorly treated by the healthcare system. Because of this, they are often reluctant to seek care unless it’s an absolute emergency. But there is never typically an emergency for chronic Hepatitis C – it’s usually a disease of decades, not one that sparks an urgent need for care. While it may be associated with fatigue and depression, it doesn’t bring people to an emergency room. We need to make a concerted effort to screen people who inject drugs and get them into care.
Additionally, the lack of specialists in the state makes it very difficult for patients to get appointments for care, often having to wait months and travel to larger cities, far from the remote, rural areas where they live. In March 2020, we developed a program called West Virginia Hepatitis Academic Mentoring Partnership (WVHAMP) that trains and supports primary care providers to screen, diagnose, evaluate, and treat people for Hepatitis C in the communities where they live and by providers they already know and trust, reducing the stigma.
Since our beginning in March last year, we have trained 72 providers and have reviewed 159 initial consultations. Out of those consultations, 38 patients have reached the timepoint to assess whether they have achieved a sustained virological response (SVR), which means they have been cured. Out of those 38 patients, 36 have been cured of the disease and two have relapsed – a 95% cure rate for clinicians who have never treated Hepatitis C before. The first person who relapsed is already virus-free after four weeks of the second course of therapy and the other patient is awaiting approval to be re-treated. The remaining 121 consultations are in various stages of treatment or are awaiting treatment. Since SVR is assessed 12 weeks after taking the last dose of medicine, there is a lag in determining the cure rates for the remaining patients. We’re very pleased with the results from WVHAMP, and we want to extend these results across the state as we build towards statewide Hepatitis C elimination.
Q: How has the COVID-19 pandemic impacted the efforts on the ground to prevent and treat Hepatitis C in Appalachia?
Providers are overwhelmed dealing with the COVID-19 pandemic, so routine care has been largely pushed to the back burner. Central Appalachia was already lacking resources before COVID-19 and the pandemic has stretched the capacity of practitioners. A lot of people are also afraid to go to an emergency room or a doctor’s office for fear of being infected with COVID-19. During these times, telehealth has become significantly more useful, reducing the risk of exposure but still getting treatment and consultations to patients in need.
Q: You’ve long focused on the intersection of infectious disease and injection drug use, a major factor of increased Hepatitis C incidence in the area. How have intervention strategies evolved in recent years, and what needs to be done to expand on this work?
Hepatitis C is not something you get from toilet seats or mosquitoes. It’s only something you get from another human being. If we cure enough human beings, we will eliminate the source of infections. Especially in central Appalachia, where the 21st century opioid epidemic is rooted, there needs to be sufficient access to harm reduction and syringe services with high diagnosis, treatment, and cure rates to reach the goal of elimination. If you relapse to substance use disorder or are not ready for sobriety, the results of the Hepatitis Real Options (HERO) study presented at the American Association for the Study of Liver Diseases (AASLD) last November demonstrate that you can still be evaluated and cured to prevent Hepatitis C transmission. To stop Hepatitis C transmissions, PWID not only need to be treated for Hepatitis C but also need access to sterile syringes that they don’t share with anybody else.
Right now, there are only 18 syringe service programs in West Virginia across 55 counties – we have a long way to go. Unfortunately, there’s a lot of public hostility to harm reduction. Two programs have been closed in the last couple of years – one in Charleston with over 6,000 clients in 2018 and another program in Clarksburg in 2019. In February 2021, SB 334, a bill with such draconian requirements that will essentially close most of the existing syringe service programs in the state, was introduced in the West Virginia legislature.
Substantially curbing syringe services, along with all the other current public health challenges, would prevent people from protecting themselves against Hepatitis B, C, and HIV. In addition to providing sterile syringes, these programs serve as a crucial bridge to treatment and can facilitate diagnosis and treatment of infectious diseases, including HIV, Hepatitis B, and C. According to Centers for Disease Control and Prevention (CDC), new users of Syringe Services Programs (SSPs) are five times more likely to enter drug treatment, and three times more likely to stop using drugs than those who don’t use the programs. It’s really an important public health measure, but there are many people, including policymakers, who don’t understand its importance.
In addition to syringe services programs, we must confront the stigma surrounding substance use disorder and people who inject drugs. Substance use disorder is a chronic relapsing brain disease. It’s not a failure of willpower. It’s not because you’re a bad person and it’s not a choice. It’s a hostile takeover of your brain. There needs to be a much broader public understanding of substance use disorder as a disease and as a public health problem.
We also need funding – the federal government must stop blocking federal funds for the purchase of syringes and other materials that are part of the injection process. I know from running a syringe services program that syringes are the most expensive item. If states can’t use federal block grants to buy syringes, then we have to find those funds somewhere else and that is not easy to do.
This all requires broad public support and a reliable funding stream.
Q: The U.S. Department of Health and Human Services (HHS), recently released the Viral Hepatitis National Strategic Plan: A Roadmap to Elimination 2021-2025 as a roadmap to elimination. The plan emphasizes that viral hepatitis is part of a larger syndemic of health threats. How will the syndemic approach to address viral hepatitis, HIV, STIs, and substance use disorders impact Appalachia, and what kinds of collaborations are necessary to make this work?
I absolutely believe that vital healthcare services for PWID need to be integrated. We can’t tell people to come here for your substance use disorder treatment, go there for Hepatitis C care, and then go to yet another place for HIV testing and treatment. First of all, there’s no adequate public transportation in rural areas. There are buses in bigger towns but no inter-town and inter-city services, so there’s no way to get anywhere in West Virginia unless you have a car and money for gas and tolls. In order to facilitate care for multiple chronic diseases, it is really important to have all of it available in one place.
For example, Substance Abuse and Mental Health Services Administration (SAMHSA) and Health Resources and Services Administration (HRSA) are trying to encourage federally qualified health centers (FQHCs) to provide medication-assisted treatment (MAT) for substance use disorder. We need to convince primary care providers that taking on the treatment of substance use disorder for their patients is something they can and should do. It is a big obstacle to get providers to do that. The motivation behind WVHAMP is to empower primary care providers to take on these diseases throughout Appalachia, where healthcare is not as accessible. I think repealing the Drug Addiction Treatment Act (DATA) of 2000 that created the X-waiver, a waiver required for prescription of buprenorphine to treat opioid use disorder, is essential to continue this work. If providers can prescribe opioids without a special certification and the possibility of random visits by the Drug Enforcement Agency (DEA) to inspect your records, it makes no sense that prescribing MAT requires it. MAT should just be a routine part of the education of all nurse practitioners, physician assistants, and physicians.
Collaborative, integrated care is the only way we’re going to get ahead of these syndemics. There are multiple other social issues that are part of these public health problems, such as the children born in withdrawal from maternal opioid use and the negative economic impact from people who are not contributing to the workforce because they are suffering from these diseases.
I visited a middle school in one of the southern counties highly impacted by injection drug use, where the students had a project to create public service announcements (PSA). The winning PSA, written by an 11-year-old girl, described how drugs affected her family – her father had gone to prison and her mother was still struggling to become sober. In a classroom of 30 kids, there was only one child living with both biological parents at home. The devastation of family and community, the loss of life, and incarceration show that syndemics aren’t just about Hepatitis C and HIV. I’ve worked in counties where half of the kids are in foster care – that’s now over 7,000 children statewide. I know 7,000 doesn’t sound like much if you live in a big city. But 7,000 kids is a lot in West Virginia, the tenth least populous state in the country. These adverse childhood experiences are going to mark them for higher risks of chronic disease and early mortality. And to have the global COVID-19 pandemic on top of this is quite challenging.
Despite the many challenges the injection drug use epidemic has brought us, there is something about West Virginia that continues to inspire me. West Virginians are very committed to improving the health of people here, and it’s incredibly rewarding to work in this state with people who have that level of care and commitment. It’s pretty special.