Hepatitis C in Black Americans

Why African Americans Are Disproportionately Affected

Black people in the United States are not only more likely to get hepatitis C, a viral infection affecting the liver, but also are less likely to access treatment for this now-curable disease. These factors contribute to disproportionately high death rates among Black people with hepatitis compared to all other racial or ethnic groups.

Black male patient comforted by female doctor

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This article offers facts and statistics about hepatitis C in the Black community. It explores why infection rates remain high and testing and treatment rates remain low despite increased awareness about the disease. It also looks at what can be done to reverse these trends affecting Black people and other at-risk populations.

What Is Hepatitis C?

Hepatitis C is a liver disease caused by the hepatitis C virus (HCV). The virus is mainly spread by blood-to-blood exposure among people who share needles and other equipment used for injecting drugs. People who got blood transfusions or organ transplants before 1992—when the first HCV screening test was approved—are also at high risk.

Around 80,000 people in the United States are newly infected with hepatitis C each year. Of these, 1 in 5 will spontaneously clear the virus (have undetectable levels after their body responds to the infection). For the remaining 80%, the infection will become chronic (long-lasting), causing progressive injury to the liver over 20 to 30 years.

Some people with chronic hepatitis C may develop cirrhosis, which causes permanent damage to the liver due to extensive scarring. A small percentage will experience liver failure or liver cancer.

Today, an estimated 3.2 million people are chronically infected with hepatitis C in the United States. Most are unaware that they've been infected because symptoms usually do not appear until significant damage has been done. Only a blood test can determine if a person has hepatitis C.

Unlike hepatitis A and hepatitis B, there is no vaccine to prevent hepatitis C. But a new class of drugs called direct-acting antivirals (DAA) can cure hepatitis C in many people. Some even offer cure rates of up to 99% with as few as eight weeks of treatment.

Facts and Statistics About Hepatitis C in Black People

Anyone can get hepatitis C, but Black people bear a disproportionate burden of the disease in the United States. In nearly every aspect of the disease, Black people remain inexplicably affected—from the higher rates of infection and deaths to the lower rates of viral clearance and cures.

The statistics speak for themselves. According to the Centers for Disease Control and Prevention (CDC) and the Department of Health and Human Services (HHS):

  • Black people are twice as likely to be infected with hepatitis C when compared to the general U.S. population.
  • While Black people represent only 12% of the U.S. population, they make up around 22% of the 3.2 million people living with chronic hepatitis C. 
  • About 1 in 7 Black men in their 50s is living with chronic hepatitis C.
  • Black people with hepatitis C are twice as likely to get liver and bile duct cancer than White people with hepatitis C.
  • Black people are twice as likely to die from hepatitis C than White people.
  • Hepatitis C today is the single leading cause of death among Black people age 45 to 65.

The causes for these disparities are many. While they reflect the general disparities experienced by people of color in the United States, other biological, social, and cultural factors play a part.

Infection Rates Among Black People

According to the Office of HIV/AIDS and Infectious Disease Policy, injecting drug use is the leading cause of new HCV infections today. The high rate of infection in the Black community is explained, at least in part, by the fact more than half of injecting drugs users are Black.

But injecting drug use is not the only cause for the disparity. The majority of infections today occurred before HCV blood screening technologies were introduced in 1992. Of these, most were the result of HCV-contaminated blood transfusions.

Sickle cell disease (SCD), a disease common in the Black community, affects 1 in 12 Black people. Many require blood transfusions to correct anemia (lack of healthy red blood cells) and avoid serious disease complications. People with SCD who received a blood transfusion before 1992 are at high risk of HCV infection. Because of this, SCD is considered an independent risk factor for hepatitis C.

HCV can also be passed from mother to child during pregnancy. Among women with SCD, 86% of whom are Black, the rate of hepatitis C is higher than among women without SCD.

Social and Cultural Risk Factors

Access to health care in the United States is not equal. This alone contributes to low rates of testing and treatment (and generally poorer health outcomes) in Black people with hepatitis C.

According to 2016 research published in the journal Medicine, Black people are 18% less likely to access hepatitis C treatment than White people. This is due in part to the fact that Black people are 50% less likely to have health insurance and will only access care when a condition is severe or advanced.

In addition, the high cost of DAAs—roughly $75,000 for a 12-week course—can make co-pay or coinsurance costs (expenses not covered by health insurance) unaffordable even for those with insurance. The risk is greater among Black people, 18.8% of whom live below the federal poverty limit compared to 7.3% of White people.

According to a 2022 study in the Journal of the American Medical Association (JAMA), insurance denials and prior authorization problems were two of the main reasons why HCV treatment rates remain low in Black communities.

Structural Racism and Bias

Economics plays only one part in the disparities. Even beyond the cost of therapy, studies show that Black people with hepatitis C are more likely to be deemed ineligible for treatment than any other racial or ethnic group.

In the past, this was due to co-occurring conditions (like diabetes or kidney disease) that made certain older therapies harmful. But those concerns have been largely erased with newer DAAs.

In fact, the American Association for the Study of Liver Diseases and the Infectious Diseases Society of America (AASLD-IDSA) today recommend HCV treatment for all people with chronic hepatitis C.

Even so, a 2017 study in the Annals of Hepatology reported that Black people were far less likely to access HCV treatment compared to White people with the same risk behaviors, disease characteristics, education status, and employment status.

Some of the barriers start at the governmental level. This includes certain state Medicaid programs that deny HCV treatment to alcohol or drug users until specific abstinence or treatment criteria are met. This is despite the fact that alcohol or drug users are no less able to complete HCV treatment when under the same medical supervision as anyone else.

With that said, Black people are generally less likely to complete HCV therapy than people of other racial or ethnic groups, according to a 2016 study in the journal Medicine. The study, which evaluated 75,655 people with hepatitis C in the United States, reported that Black people were 19% less likely to complete HC treatment than White people.

Socioeconomics was a major factor in the dropout rate. Healthcare bias (providers treating people differently due to race), both perceived and real, also plays a part in how people access or remain in treatment.

Disease Progression in Black People

As much as health disparities can affect the outcome of any disease, several biological factors contribute to the progression of hepatitis C in Black people.

Black people are less likely to naturally clear HCV (have undetectable virus after responding to the infection) than other groups for reasons not entirely understood.

According to a 2012 study in the Journal of Clinical Gastroenterology, Black people are 32% less likely to experience HCV clearance than White people and 62% less likely than Latinx people. This alone contributes to higher rates of infection in the Black community.

On the other hand, hepatitis C is less likely to progress to cirrhosis in Blacks. However, if it does, it is twice as likely to lead to hepatocellular carcinoma (liver cancer) when compared to White people. Moreover, it will do so faster and with larger and/or multiple tumors, according to a 2021 study in the journal Cancer.

Research suggests that certain gene mutations account for the aggressive progression of hepatitis C in Black people. This includes mutations of the IL28B gene, which appears to increase the risk of both chronic HCV infection and hepatocellular carcinoma.

Response to Hepatitis C Therapy

Another issue affecting Black people with hepatitis C is their response to DAA treatment. Generally speaking, DAAs are equally effective in achieving a cure—defined as a sustained virological response of 12 weeks (SVR12)—despite a person's race or ethnicity. Even so, SVR12 appears somewhat harder to achieve in Black people.

Among the findings of a 2018 study conducted by the Veterans Administration (VA) Services of Los Angeles are:

  • While other racial or ethnic groups can achieve SVR12 after eight weeks of treatment, Black people typically need 12 weeks.
  • Around 87.8% of Black people achieved SVR12 after treatment compared to 92.4% of White people even with perfect drug adherence.

Higher rates of advanced liver disease at the time of treatment appear to play a role in this. Research also linked mutations of the aforementioned IL28B gene to the poorer response rates.

Reversing the Trends

Reversing the trends negatively impacting Black people with hepatitis C requires a coordinated response. In tandem with governmental and institutional partners, HHS has issued the Viral Hepatitis National Strategic Plan to combat the disease in at-risk communities.

The strategy aims to prevent new hepatitis infections and improve outcomes for people living with the disease. It is also focused on reducing health disparities related to hepatitis.

Central to the strategy is reducing hepatitis C–related death among Black people in the United States and efforts to curb the transmission of the hepatitis C virus among injecting drug users.

Education plays a key role in the effort. This includes encouraging those at risk of infection to seek testing. According to the Office of HIV/AIDS and Infectious Disease Policy, this includes:

  • People born from 1945 to 1965 (“baby boomers”)
  • Recipients of blood transfusions or donated organs before 1992
  • Recipients of clotting factor before 1987
  • Current or former injecting drug users
  • People with signs or symptoms of liver disease
  • Children with mothers who have hepatitis C and have had hepatitis C while pregnant
  • People on long-term hemodialysis (treatment that filters waste and extra water from your blood)
  • People with human immunodeficiency virus (HIV, around 5% of whom are coinfected with HCV)
  • People with known exposure to hepatitis C (such as healthcare workers)

The CDC offers the GetTested website to locate free hepatitis C testing sites near you.

Summary

Hepatitis C disproportionately affects Black people in the United States. Despite representing only 12% of the population, Black people account for 22% of the 3.2 million people estimated to be living with hepatitis C in the United States today.

While most new infections result from injecting drug use, most infections are due to tainted blood transfusions given before 1992. This includes blood transfusions commonly used to treat sickle cell disease (SCD) common in Black populations.

Black people are also less likely to naturally clear the virus after infection and more likely to die of hepatitis C–related complications than their White counterparts. Certain biological and genetic vulnerabilities are thought to place Black people at an increased risk.

Access to hepatitis C treatment is unequal in the United States, particularly with regard to Black people. In addition to high poverty rates and a lack of access to insurance, structural racism and healthcare bias prevent many Black people from accessing HCV treatments they are fully entitled to.

Efforts are underway to reverse these trends under the federal government's Viral Hepatitis National Strategic Plan. This includes reducing the mortality rate among Black people with hepatitis C and lowering the rate of new infections among injecting drug users.

A Word From Verywell

Being Black increases your risk of hepatitis C, but it doesn't mean that you are destined to get hepatitis C. To reduce your risk, never share needles of any sort, including those used to inject insulin, cosmetic fillers, or anabolic steroids. Only use tattoo parlors and piercing studios licensed by your state's department of health.

If you do have hepatitis C and treatment is denied, seek the assistance of a patient advocate or community-based legal aid services, some of which are available free of charge.

If drug costs are unaffordable, financial aid is available through manufacturer co-pay assistance programs, drug discount cards from the American Liver Foundation (ALF), and nonprofit assistance programs like the Healthwell Foundation and the Patient Access Network (PAN) Foundation.

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