To tackle the “silent epidemic” of viral hepatitis, researchers are drawing from the experience of HIV/AIDS. Though hepatitis is four times as widespread as HIV/AIDS, most Americans know little about the disease, which causes inflammation of the liver. Health experts are especially concerned that many of the up to 5.3 million people infected with hepatitis B or C are unaware of their infection. The lack of diagnosis and subsequent treatment means that researchers do not have a large amount of data to inform strategies for reducing the impact of hepatitis.
In the 1990s, physicians began submitting HIV/AIDS information into a central electronic database, providing researchers valuable insight into how patients were getting infected, how their infection was affecting their overall health, and how well different drugs and treatments were working. That knowledge provided answers about the best treatment strategies for HIV/AIDS and helped save lives. Researchers are optimistic that a similar approach to studying hepatitis could yield equally significant and life-saving information.
With funding from the Viral Hepatitis Action Coalition, the Centers for Disease Control and Prevention (CDC) has launched a groundbreaking study called the Chronic Hepatitis Cohort Study (CHeCS)*. The study will collect a large amount of data from a large group of people over a long period of time to uncover the answers to many important questions about hepatitis and the best strategies to fight it.
New infection rates of hepatitis B and C have been declining for the last 10 years due to the hepatitis B vaccine, improved screening of blood donors, and better infection control in health-care settings. Treatment methods are also improving. Several drugs are now available that can cure hepatitis C in up to 80-85% of cases.
However, people with untreated hepatitis often develop chronic liver disease, and deaths from hepatitis B and C are on the rise. In 2007, for the first time, more Americans died from hepatitis C than from HIV/AIDS. If current trends continue, CDC projects that by 2025 as many as 38,000 Americans could die each year from hepatitis C.
“This is a ticking time bomb. Most people are not symptomatic for the first 10 to 20 years and, when they do get symptoms, it’s often too late for treatment,” said Dr. Scott Holmberg, lead investigator for the study with the CDC’s Division of Viral Hepatitis. “There are millions of people out there and, as they get older, we anticipate a lot of them having end-stage disease.”
Through CHeCS, CDC is collaborating with medical centers in Detroit, MI; Honolulu, HI; Portland, OR; and Danville, PA to collect and analyze data on more than 12,500 people with chronic hepatitis B and C. The medical centers are providing anonymous electronic data from medical and insurance records and are also administering a survey developed by CDC to patients who give their consent.
Electronic data will help CDC learn more about the progression of the disease and the range of health impacts it can have – for example how hepatitis affects not only the liver, but the heart and kidneys. The data will also show who gets medical care and what kind of care they get; the benefits and risks of medicines and treatment over time; the use and effectiveness of screening and care practices; and other factors affecting a patient’s outcome.
The survey will provide CDC with valuable information about patients’ use of alcohol, tobacco, and injection drugs; their psychosocial health; their adherence to prescribed medications; barriers to treatment; and other factors that may affect a patient's experience with hepatitis but that would not necessarily be captured through standard medical records.
The study has already provided vital information about who receives care and what kind of treatment they receive, which could potentially inform policies and procedures to ensure that more people get the help they need.
With continued funding, Holmberg’s team hopes to continue the study for at least a decade. He cites many advantages to an extensive population-based study like this, most notably that understanding the scope and progression of any disease, as well as the effects of treatment, requires observation of a great number of people over a long period of time.
“We are in the situation that AIDS was in 10 years ago,” he said, noting that both medical professionals and the public lack awareness of the issue and need more information on diagnosis, care, and treatment for hepatitis. “Once these findings are published, people will realize that hepatitis is a bigger problem in this country than HIV.”