Harold Amos Scholar Identifies Profound Lack of Awareness about Kids with Hepatitis C Virus

Aymin Delgado-Borrego finds that only 1 percent of children estimated to have HCV in Florida are receiving potentially life-saving medical treatment.

    • June 21, 2010

If at first you don’t succeed, try, try again.

Physician scientist Aymin Delgado-Borrego re-learned this fundamental lesson while researching the Hepatitis C virus (HCV).

Four years ago, Delgado-Borrego, M.D., M.P.H., moved to Miami to begin research into insulin resistance in adults and children, a project that was funded by the Harold Amos Medical Faculty Development Program. Supported by the Robert Wood Johnson Foundation (RWJF), the Harold Amos Program aims to enhance the diversity of faculty at the nation’s medical schools. Delgado-Borrego became a Harold Amos Program scholar in 2006 and will complete the program in 2011.

Based on national survey data, Delgado-Borrego expected to find hundreds of children in the city and the surrounding areas who were infected with Hepatitis C. But, to her surprise, she could only identify a handful of HCV-infected children at local health clinics.

The lack of HCV-infected children was so puzzling that she decided to look into the matter further. While continuing her research into insulin resistance, she also began a search for the children infected with HCV who she had expected to find at local clinics.

Delgado-Borrego conducted a detailed review of the health data for all of Miami-Dade County and sent an online survey to all licensed pediatric gastroenterologists in the county inquiring about the number of pediatric HCV-infected patients. She then broadened her investigation to the state level.

What she found shocked her.

Of the 12,155 children estimated to have HCV in Florida, only 1,755—or 14.4 percent—had been identified. What’s more, only 1.2 percent of the estimated number of infected children were actually receiving medical care.

Delgado-Borrego says the proportion of children with HCV infection that have been identified is even lower in most other states. Florida, she notes, does a better job than most other states of keeping track of communicable diseases.

“There is a frightening lack of awareness among both the public and clinicians about Hepatitis C virus infection in pediatric patients,” she says.

Delgado-Borrego Asked to Present Findings at Conference of Physician Scientists

Her findings have since become the basis of a new study about the lack of awareness of HCV-infected children. Delgado-Borrego was one of four researchers—selected from a group of more than 5,000 physician scientists—who were asked to present their findings in a special telebriefing in advance of Digestive Disease Week, the world’s largest gathering of physicians and researchers in the fields of gastroenterology, hepatology, endoscopy and gastrointestinal surgery. The conference was held in New Orleans.

The news garnered nationwide media coverage in publications ranging from regional newspapers and health trade publications to U.S. News & World Report and the Discovery Channel online. It also sparked a discussion among health authorities about steps that can be taken to identify more HCV-infected children.

“We have identified a significant problem that needed attention,” she says. “Hopefully that means we can focus our energy on identifying barriers that are preventing children from being identified and treated for HCV infection and then do something about it.”

Early identification and treatment of HCV could save countless lives, she says.

HCV infection, she said, is like a time bomb: There are often no discernable symptoms until the very late stages of the disease. At that point, patients may begin to experience enlarged abdomens, profuse bleeding and bruising. But when patients are diagnosed at this late stage, the virus is often too advanced to treat. Patients who cannot get a liver transplant are faced with death.

Early treatment, however, can prevent liver failure, liver cancer and death, especially among children, she says.

More than half of the children who are currently infected with the virus could be cured, Delgado-Borrego says. Advances in antiviral therapy could boost that rate and save even more lives in the future, she notes. Treatment and prevention programs could also ease the social and financial burdens of the disease and prevent its spread.

Children are excellent candidates for medical treatment because most have had the disease for a shorter period of time than adults, they are less likely to have co-existing conditions that could complicate treatment, and they are less likely to have extensive liver damage. Early identification and treatment would have a disproportionate benefit for Blacks and Latinos, who are more likely than other groups to carry the virus.

The good news is that the solutions to the problem are simple, Delgado-Borrego says.

To start, physicians should screen all children born to women who are infected with the virus, Delgado-Borrego says. Physicians should also screen all pregnant women at risk for the infection, because children are most likely to acquire the infection in the womb. Physicians should also screen teenagers who use drugs or other illegal substances.

“If we started with these simple steps, we would be much better off,” she says.

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