With an estimated 3.2 million Americans chronically infected with the hepatitis C virus (HCV), and an estimated 75% of them unaware of their infection, the sheer magnitude of the number of persons infected calls the nation to action. Moreover, chronic HCV infection is the most common cause of liver cirrhosis and primary liver cancer, and need for liver transplantation in the United States. HCV is not, however, an ethnically-neutral infection. So our public health response must be attuned to underlying racial and ethnic disparities that, among other things, demonstrate disparate HCV-related morbidity and mortality among African Americans. These HCV-related health disparities among African Americans are observable across the continuum from screening and diagnosis to treatment access, treatment outcomes, and, even, death rates from HCV. Consider for example:
- Prevalence: According to CDC analysis , the prevalence of chronic HCV varied by race and ethnicity with the percentage of African Americans (3.0%) approximately twice that in White Americans (1.5%). African Americans were 12-13% of the U.S. population, but accounted for 23% (920,000) of HCV infected persons.
- Morbidity: The incidence of primary liver cancer has doubled among all U.S. racial and ethnic groups during the past two decades with 30-50% of cases due to chronic HCV. Consistent with the racial disparity in HCV prevalence, the incidence of primary liver cancer in African Americans is twice the incidence in Whites.
- Mortality: HCV-related mortality rates have also been increasing annually since 1995. From 1995-2004, a 130% increase in overall mortality was reported, with a much faster rise in African Americans compared to White and Asian Americans. In 2007, an estimated 15,100 deaths in the U.S. were attributed to HCV. Eighteen percent of the deaths occurred in African Americans who had almost double the odds of HCV-related death compared to Whites.
Further, with regard to treatment for HCV infection, it is known that HCV can be cured by antiviral therapies, and that a cure is associated with improvements in liver disease severity and a decreased incidence of end-stage liver disease, primary liver cancer, need for liver transplantation, and death relative to patients who do not experience a cure following treatment. Historically, however, African Americans have had significantly lower cure rates following interferon-based treatments for HCV genotype 1 (the most common form of HCV among African Americans) compared to White, Asian, and Hispanic Americans. Fortunately, racial differences in HCV cure rates have narrowed considerably following development and FDA approval of direct-acting antiviral treatments for HCV genotype 1 (2011-2013) combined with peginterferon and ribavirin. Yet, estimates of the efficacy of direct-acting antiviral treatments in African Americans are imprecise due to their under-representation in clinical trials. The lack of sufficient data on the efficacy and safety of treatments in African Americans has the potential to foster racial disparities in the quality of healthcare.
Finally, African Americans face many other significant barriers to healthcare access for HCV diagnosis and treatment, including a lower rate of private health insurance, being less informed about HCV, and being less likely to be considered treatment candidates for older treatments (containing peginterferon) by healthcare providers who may not be aware of the efficacy of new treatments in African Americans.
In the face of these startling facts on the burden of hepatitis C in the African American community, last year the National Medical Association (NMA) – the nation’s largest and oldest association of African American physicians – convened an HCV Consensus Panel comprised of key experts from academic centers, private practices, associations, research centers, and public health entities. It was my honor to co-chair this panel. Our charge was to “to review the national challenge of hepatitis C, examine the evidence base on racial and economic disparities in this area, and propose a national response to such disparities that can be implemented by clinicians, policymakers, researchers, public health advisors, community organizations, and the general public.” Working between May and October 2013, the Consensus Panel reviewed and summarized the available literature and recommended strategies to address the excessive burden and worse outcome of chronic HCV infections among African Americans. In October 2013, the NMA published “Hepatitis C: A Crisis in the African American Community, ” the findings and recommendations of the Consensus Panel.
“Hepatitis C has the potential to devastate the African American community in the next 10 to 20 years. It is a quiet infection until the very late stages, and so it is critical that all patients, particularly African Americans patients, get screened for HCV before symptoms develop,” noted my fellow co-chair, Andrew Muir, MD , Director of Gastroenterology and Hepatology Research at Duke Clinical Research Institute. “There are now treatments that can cure HCV and prevent the complications. We have the ability to prevent cirrhosis and liver cancer from HCV, but we first have to find the patients living with this infection.”
Among the findings and recommendations from the Consensus Panel detailed in the report are:
- There is a need for increased HCV awareness among African Americans. The Consensus Panel recommends that its members, the NMA, and key partners engage in a campaign to support one-time screening for the baby-boomer cohort (those born between 1945-1965) who comprise the majority of those with an HCV infection, as recommended in June 2013 by the U.S. Preventive Service Task Force . In addition, the panel cites the need to increase the knowledge of both patients and providers about the traditional risk factors that are associated with the HCV infection.
- There is a need to reduce or eliminate under-diagnosis of HCV. The Consensus Panel recommends that physicians, nurses and other healthcare professionals bring HCV screening out of their offices and into nontraditional settings where high-need populations reside, rather than waiting for these populations to seek treatment. Toward this end, the Panel also recommended broader use of rapid testing to expand screenings among underserved populations. The use of rapid testing improves, greatly, the probability that positive results are received. Another panel recommendation related to reducing under-diagnosis is enhancing HCV screening among inmates in prisons and jails.
- There is a need for increased access to care and treatment for HCV-infected people. The Consensus Panel highlights the promise of the Affordable Care Act to improve access to HCV care and treatment. The panel recommends that the NMA and healthcare providers support the enrollment of uninsured individuals at high risk of HCV into health coverage now available through the Affordable Care Act.
- There is a need to provide training on HCV to current and future healthcare providers. The report notes that providers of all races and ethnicities require adequate education and training about racial disparities in HCV epidemiology, clinical course and treatment outcomes, and barriers to care and treatment.
- There is a need for greater inclusion of African Americans in clinical trials. The panel recommends that the NMA expand its intensive training using experts that prepare more African American-serving physicians to participate in clinical trials. The Consensus Panel also called for greater participation of African Americans in clinical trials so that efficacy and safety in this patient group can be more rigorously studied and understood.
With this HCV Consensus Paper, the NMA has committed its staff, resources, membership, and partners to active participation in transforming the described recommendations into actions that will result in saved lives.