Marvin Jackson, 70, has been an avid tennis player for most of his life. When he noticed that his urine was a deep brown color, he wrote it off as a symptom of dehydration.
Then, in 2012, Jackson, who is African American, learned from his doctor that his dark urine was actually a sign that he had hepatitis C. Hepatitis C is a serious infection that affects the liver but can have few symptoms.
Unhappy with his doctor’s bedside manner, he delayed returning for a follow-up after his diagnosis. When he did return, he got another stunning diagnosis from a different doctor.
“He says, ‘Marvin, you’ve got liver cancer,’” Jackson recalled. Untreated hepatitis C is one of the causes of the illness. “Before I get a chance to let it all sink in, he’s telling me what we’re gonna do.”
Jackson had a liver transplant in 2013. Recovery has been a challenge, he said, but now he’s reached a “new normal.”
African American and Latinos Face Increased Rates of Liver Cancer, Higher Death Risk
Jackson’s case is not uncommon. People of color have long had higher rates of liver cancer, and data recently released by the Centers for Disease Control (CDC) suggests that the disparity persists.
The study, released in July, showed that death rates for liver cancer in adults (aged 25 and up) increased by 43 percent between 2000 and 2016.
Researchers also found sharp disparities in death rates by race. The rate for non-Latino whites was 9 per 100,000. Asian and Pacific Islanders (APIs) and African Americans both had death rates of 13.6 per 100,000. Latinos had the highest death rates of 14.6 per 100,000.
While they remain high, death rates among APIs have dropped significantly since 2000, when the rate was 17.5.
In California, liver cancer incidence and death rates have also declined among APIs since 2000. Yet rates among Latinos and African-Americans have increased over that same period, according to data from the California Cancer Registry.
Just over half of liver cancer cases arise from well-established risk factors, like viral hepatitis, cirrhosis, and non-alcoholic fatty liver disease, according to Salma Shariff-Marco, a UCSF professor who works on the Greater Bay Area Cancer Registry. Researchers, health care professionals and advocates are doing their best to screen, prevent and treat for those risk factors.
Mindie Nguyen, a Stanford physician who runs a lab focusing on causes of liver cancer, said that in general, high rates of hepatitis, a virus that inflames the liver, are to blame for these disparities. Some Asian and Latin American countries have higher rates of viral hepatitis that persist in those ethnic groups even after they’ve immigrated to the United States.
The declining rates in the API population are due in part to enhanced therapies for hepatitis as well as vaccination against hepatitis in young people, according to Nguyen.
Higher Rates of Hep C Infection Among African Americans
African-American Californians also face an elevated risk of hepatitis C. Katie Burk, viral hepatitis coordinator at the San Francisco Department of Public Health, heads the city’s End Hep C initiative. The initiative is just one of a robust set of efforts to reduce hepatitis and liver cancer. The San Francisco Cancer Initiative (SF CAN) collaborates with End Hep C and San Francisco Hep B Free to increase screenings and treatment of viral hepatitis. Burk noted that although African Americans represent only six percent of the city’s population, they account for more than 30 percent of its hepatitis C cases.
Though Jackson faced a higher risk of hepatitis C than other ethnic groups—in California in 2015, African Americans were just under six percent of the population but nearly 12 percent of the hepatitis C cases – he was shocked by his diagnosis. “It was out of the blue,” he said. “I had never heard of hepatitis C.”
Jackson learned from his doctor that he may have been living with hepatitis C undiagnosed for decades. That’s likely how it developed into liver cancer. People are often unaware that they have hepatitis: it’s estimated that only half of all hepatitis C cases, and just ten percent of hepatitis B cases are diagnosed, according to Nguyen.
Jackson couldn’t imagine how he contracted it. He didn’t drink until he was 35, and he didn’t use drugs, he said. Alcohol and injection drug use are major causes of hepatitis C. Without symptoms or obvious risk factors, Jackson was lucky to find his hepatitis when he did.
Follow-up Crucial to Reducing Cancer Risk
Patients like Jackson, who delay follow-up, can easily have their tumors grow to a stage where it’s too late for successful treatment, so Nguyen recommends screening every six months.
“Many patients say, ‘Why do I have to do this every six months? It’s so time consuming,” Nguyen said. “It’s not like skin cancer. Liver cancer you have no pain at all until it’s really big. By then it’s almost always too late. Patients are busy and they’re asymptomatic so they forget.”
Although successful therapy for hepatitis B and C can reduce the risk of cancer by 50 to 70 percent, Nguyen said, she cautioned that patients should still be wary after treatment.
“The risk doesn’t become zero,” Nguyen said.“It depends on the age of patient and progression of disease, but it’s still much higher than someone who never had been infected.”
When Jackson stopped visiting his doctor for follow-ups, he said he felt fine. But he later learned how lucky he was that he came in for a screening when he did. The doctor told him that he needed a liver transplant within the next 14 months, or they wouldn’t be anything they could do to save his life.
Patients who adhere to the biannual surveillance double their chances of receiving curative treatment, Nguyen said. She advocates strict screening guidelines for hepatitis and liver cancer.
Screening Alone Won’t Fix Disparities
According to the California Department of Public Health, such screening guidelines, along with hepatitis B vaccinations for low-income populations, are an essential component of the statewide effort to reduce liver cancer.
But preventing liver cancer is far more complex than simply addressing the viruses that cause it.
About 40 percent of cases are from emerging risk factors or causes that researchers have not yet identified, according to Shariff-Marco, the UCSF professor.
“It is a big challenge because it limits how we can message around liver cancer prevention,” she said.
These factors range from socioeconomic status to involvement with the criminal justice system. Impoverished and incarcerated individuals not only face higher risk of liver cancer but also greater barriers to access health care.
Low socioeconomic status and rates of incarceration affect racial minorities disproportionately, worsening ethnic groups’ already higher rates of liver cancer and death.
“There’s all of these overlapping vulnerabilities, I think a lot of which are related,” said Burk, with San Francisco’s Department of Public Health.
The odds are stacked against black men like Jackson, but the now-retired artist and teacher, feels lucky. His body had to adjust to the transplant, but five years later, he’s regained some energy and fitness. The 6-foot-3 man had dropped to 170 pounds at his worst, but is now back up to 200 and playing tennis again.