Racial Inequalities in Liver Cancer Deaths Linked to Hepatitis C Treatment

Lack of access to newer drugs disproportionately affects Black people

Hepatitis C does not affect all groups equally. Black and Latinx people in the United States are not only more likely to get this viral liver disease but more likely to die from hepatitis C complications than White people.

What is especially alarming is the high rate of liver cancer and liver cancer deaths among Black people, which is around 50% higher than the rate seen in Whites.

Hepatitis C is a contributing factor given that Black people are twice as likely to have the virus than Whites. Even so, other factors contribute to the disproportionately high death rate, not least of which is the unequal access to treatment.

Black man in a hospital bed being comforted

FG Trade / Getty Images

Although Black people are not the only group affected by liver cancer—the rate among Asian and Latinx people is also disproportionately high—the underlying cause and outcomes are unique. Studies suggest that in Black people particularly, the primary cause for the disparity is a lack of access to hepatitis C drugs.

This article takes a closer look at the racial disparities associated with hepatitis C and liver cancer. It explains why the death rate remains high among Black people with liver cancer and how unequal access to hepatitis C treatment continues to fuel an otherwise avoidable public health crisis.

Hepatitis C and Liver Cancer by Race

Hepatocellular carcinoma (HCC) is the most common type of liver cancer and the form most commonly associated with hepatitis C infection.

Overall, between 1% and 3% of people living with hepatitis C will develop HCC, usually within 30 years of the initial infection. When compared to the general population, people living with hepatitis are between 15 and 20 times more likely to get HCC.

It is unclear why some people with hepatitis C get HCC and others don't. What is known is that the chronic inflammation spurred by hepatitis C can progressively damage the liver. Over time, the buildup of scar tissue can reduce the function of the liver, leading to cirrhosis (a scarred and permanently damaged liver).

In some people, the damage may eventually extend to the DNA of liver cells, causing cellular changes that lead to liver cancer.

Some racial or ethnic groups are at higher risk of this than others. According to a 2020 review in JGH Open, the rate of HCC among Asian people in the United States is 4 times higher than among White people, while the rate among Black people is 2 times higher.

Even so, the underlying causes of liver cancer can differ from one group to the next, as follows:

  • Asian people: Among Asian Americans, many hepatitis C infections occurred prior to their immigration to the United States. Even so, hepatitis B remains the leading cause of liver cancer among Asians in the United States, with as many as one in 10 carrying the virus.
  • Latinx people: High rates of cirrhosis among Latinx people contribute to the high rates of HCC. Other factors include high rates of alcohol use disorder, obesity, and nonalcoholic fatty liver disease (NAFLD). Hepatitis C accounts for around 40% of all HCC cases in Latinx people. Hepatitis B is a less likely cause.
  • Black people: Black people with hepatitis C have lower rates of cirrhosis than any other racial or ethnic group. Even so, they are twice as likely as White people to get HCC if cirrhosis occurs. It is thought that genetics contributes to this disparity. More than any other group, the majority of liver cancer cases are due to hepatitis C.

Liver Cancer Deaths by Race

In the United States, liver cancer is the fifth leading cause of cancer deaths in males and the seventh leading cause in females. It has an overall five-year survival rate of 20%, meaning that one of every five people diagnosed with liver cancer will be alive after five years.

Despite declining rates of other types of cancer in the United States, the rate of liver cancer is on the rise—as is the rate of liver cancer deaths. Studies suggest that liver cancer will likely become the third leading cause of cancer-related death by 2030.

As a group, Black people remain disproportionately affected by liver cancer deaths. According to a 2017 study in the journal Cancer, the five-year survival for Black people with hepatitis C and liver cancer is 27% less than all other groups.

According to a 2021 analysis in the journal Cancer, Black people with hepatitis C and liver cancer have the lowest survival of any racial or ethnic group.

There are several overlapping reasons for this, which are:

  • Viral clearance: Around 30% of all people newly infected with hepatitis C will spontaneously clear the virus within six months. By comparison, only 9% of Black people will clear the virus. This alone increases the number of Black people at risk of long-term liver complications like HCC. Genetics is believed to contribute to this low clearance rate.
  • Disease progression: Hepatitis C tends to be more aggressive in Black populations. Statistically, Black people with hepatitis C develop HCC at the earlier stages of the infection. When tumors appear, they tend to be larger and more advanced. Black people are also more likely to have multiple tumors or high-grade (aggressive) tumors.
  • Late diagnoses: As a group, Black people with hepatitis C are more likely to seek treatment when the disease is advanced due to poverty, poor access to medical care, and other factors. A late hepatitis C diagnosis increases the risk of hospitalization (59% compared to 35% without a late diagnosis) and the risk of death (33% compared to 9% without a late diagnosis).
  • Cure rates: Studies have shown that having HCC decreases the effectiveness of hepatitis C treatments. According to a 2017 study published in the Journal of Hepatology, having HCC reduces the chance of a "cure" from 88% to 79%.

These same dynamics are not seen in Asian or Latinx people with HCC. While Asians with hepatitis C have higher rates of HCC than all other groups, they tend to experience less aggressive disease and have longer survival times.

Similarly, while the rate of HCC is rising among Latinx people, they tend to be diagnosed early due to coexisting medical conditions like NAFLD. As a result, Latinx people tend to have similar survival times as White people with hepatitis C.

Access to Hepatitis C Treatment

One of the major factors affecting the mortality rate of any chronic illness is access to treatment. This is especially true for hepatitis C, a disease that was largely considered incurable before 1990.

After the hepatitis C virus was identified in 1989, drugs were quickly developed to treat the infection and prevent disease progression. By the late-1990s, combination therapies offered cure rates of up to 70%, although many of the drugs were highly toxic and required up to 48 weeks of treatment.

It was only in 2014 that a new class of drugs, called direct-acting antivirals (DAAs), was introduced. Not only did these drugs have fewer side effects, but many were able to deliver cure rates of up to 99% with only eight to 12 weeks of treatment.

Despite the breakthrough, DAAs were—and continue to be—very costly, demanding $70,000 or more for a 12-week course. As a result, access to DAAs continues to be difficult for many people, particularly people of color, who tend to have higher rates of poverty and lower rates of health coverage.

While the access to treatment can vary by state, a study from California reported that Black people were 30% less likely to access DAAs than White people, while Latinx people were 20% less likely.

To complicate matters even further, a 2017 study in the Annals of Hepatology reported that Black people with hepatitis C  are more likely to be deemed ineligible for treatment despite having the same stage of disease, education, and employment status as their White counterparts.

Impact on Mortality Rates

The lack of access to DAAs not only affects the health of people with hepatitis but also has a direct relationship to liver cancer deaths, according to a 2020 study from the Baylor College of Medicine.

The study reported the rate of liver cancer deaths steadily declined from 1978 to 1998 prior to the introduction of combination hepatitis C therapies. Although more Black people were affected overall, the rate of decline was equal among all groups despite race.

As newer, more effective drugs were being released starting in 1996, the trend shifted dramatically. From 1998 to 2016, over 16,700 liver cancer deaths were reported among Black people in the United States. Moreover, the excess of deaths among Black people compared to White people increased from 27.8% in 1998 to 45.7% by 2016.

Among older adults, who are at the highest risk of liver cancer, the disparity was even greater. While White people 55 and over experienced a 2% per year increase in liver cancer deaths between 2000 and 2016, Black people 55 and over experienced a 4.2% per year increase during the same period.

According to the study, the disparities in liver cancer deaths largely mirror the disparities in treatment access among Black people in the United States.

It can be presumed that many of the same factors may affect Latinx communities given that HCC is closely linked to the lack of private health insurance. Moreover, higher rates of poverty in Latinx communities directly influence HCC treatment rates, with economically disadvantaged Hispanic people less likely to receive curative treatment than any other racial or ethnic group. Further research is needed.

In the United States, the median age of people newly diagnosed with liver cancer is 62. Less than 15% of cases are seen in people under 55.

Summary

In the United States, liver cancer disproportionately affects people of color. Compared to White people, Asians are 4 times more likely to get liver cancer, while Black and Latinx people are 2 to 3 times more likely.

Liver cancer can be caused by many things (including hepatitis B and nonalcoholic liver disease), but, among Black people, hepatitis C is the primary cause. Although cirrhosis is less common in Black people with hepatitis C, it is more likely to progress to cancer if it does.

Because liver cancer tends to be more aggressive in Black people with hepatitis C, the survival times tend to be poorer compared to all other racial or ethnic groups. While genetic and biological factors contribute to the disparity, the lack of access to hepatitis C treatment plays a major role.

Studies have shown that despite the widespread availability of hepatitis C therapies, disparities in access have contributed to an increase in the rate of liver cancer deaths among Black people 55 and over compared to White people 55 and over.

A Word From Verywell

Today, the American Association for the Study of Liver Diseases and the Infectious Diseases Society of America (AASLD-IDSA) recommend immediate treatment for all people with chronic hepatitis C, with the exception of those whose life expectancy is less than 12 months.

As such, if you are denied treatment by an insurer, work with your healthcare provider, a social worker, or a patient advocate to appeal the decision. The process is relatively straightforward but must be filed within 180 days of the written denial.

It often helps to work with a hepatologist or gastroenterologist who understands the appeals process and is better equipped to motivate for treatment.

On the other hand, If your healthcare provider says hepatitis C treatment is medically necessary but you are still denied coverage, you can file a lawsuit as a last resort. Contact the American Bar Association at (800) 285-2221 for advice about low-cost or free legal assistance in your area.

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