By Isaac Itman
"[My doctor] did not follow-up on it," said Thomas, founder of Hep-C Alert, a non-profit organization based in North Miami, FL., dedicated to collecting data, informing and providing support to people affected by Hepatitis C (HCV).
According to the Centers for Disease Control and Prevention (CDC), approximately 4.1 million Americans have been infected with HCV, a blood-borne virus causing inflammation of the liver. Because persons infected with Hepatitis C may not experience any symptoms, education is an essential tool to take action.
Hepatitis C was first discovered in 1989 and a test to confirm exposure to the virus was created in 1992. Although new cases of Hepatitis C have dropped significantly, Hepatitis C can lead to chronic liver disease, cancer and cirrhosis.
Hepatitis C can be transmitted through intravenous drug use, tattooing and piercing where appropriate health procedures are not followed, and blood transfusions - although after 1992 this risk is almost non-existent.
There are other potential risks, such as the use of intranasal drugs, but since they don't fall under the traditional risk factors, some people are not sure how they got infected, which is the case with Thomas.
"[I] acquired Hepatitis C and never had a blood transfusion or injected drugs," said Thomas. "My potential route of transmission was accidental needle sticks, years and years ago when I was a medical assistant."
According to the National Digestive Diseases Information Clearinghouse (NDDIC), the Hepatitis C virus represents one of the most significant causes for chronic liver disease in the United States.
Thomas said testing is essential in order to stop damage to the liver. Once a person knows he is infected, he can take steps to change those life-style factors that can speed progression, including the use of illegal drugs, alcohol and even taking over-the-counter or prescription medication contraindicated to people with liver disease.
"Actually, very few people know they are infected at the beginning," she said. According to the Center for Disease Control and Prevention (CDC), Hepatitis C is that it tends to turn into a chronic lifelong infection about 55-85 percent of the time.
In 1996, Thomas was referred for a colonoscopy screening, but after her gastroenterologist looked at the test history a Hepatitis C test was recommended.
"Without the advice of that physician, and the colonoscopy screening, I would still be being followed by my family practitioner and doing nothing to prevent progressive liver disease," she said.
"We have to educate individuals with blood exposure," said Corinna Dan, Chief Operating Officer of Hepatitis Foundation International, a non-profit organization based in Silver Spring, Md., aimed at providing information on prevention, diagnosis and treatment of viral hepatitis. Dan said raising awareness among patients is necessary to let lawmakers know about the issue.
"There is no awareness and therefore patients don't know and don't get screened," she said.
Hepatitis C also affects medically underserved populations.
Lorren Sandt, program director of Hepatitis C Caring Ambassadors, a non-profit organization located in Oregon City, OR, working to raise awareness on this issue, said African-Americans are disproportionately affected and there are only two specific groups nationwide addressing Hepatitis C in this minority population.
"Everyone should know how you get Hepatitis C and how you can prevent it," she said.
Other minorities, such as Hispanics, also face the challenge of language and cultural barriers.
Susan Simon, president of the Hepatitis C Association, a non-profit organization that offers support and information to patients living with HCV, said "there is not enough information and resources for Spanish-speaking patients."
Experts agree that being informed is crucial because Hepatitis C is treatable. But patients must know they have HCV in order to change eating and drinking habits.
"Alcohol makes the disease progress to more severe stages," said Dr. Marcelo Kugelmas, who treats patients at a private gastroenterology clinic in Denver, CO.
Two different drugs are available to treat HCV, Interferon and Ribavirin, and a combination therapy is also recommended by doctors. Besides treatment, attending support groups can be very helpful.
These drugs work for some, but not all, patients, according to the American Liver Foundation. Depending on the type of hepatitis C virus that a patient has, the treatment has a 40% to 80% chance of getting rid of the virus. For people infected with the most common type of hepatitis C (genotype 1) in the United States, treatment is successful in 50% of cases. Studies show that African Americans have a much lower success rate with combination treatment -- only 28%.
"Some people with Hepatitis C might experience depression as a side effect of the treatment," Dan said.
Thomas, who went into treatment for six months in 2004 and is currently Hepatitis C free, said there is no regimen for post-treatment other than to follow common sense and allow the liver to heal and become stronger.
According to Thomas, some people who have a mild form of the disease are not doing much to treat it. She warns they should be aware that almost every medical condition that has to be pharmaceutically managed requires a healthy liver. So, leaving the disease to progress will compromise their health and their bodies' response to treatment for many other conditions.
"I am very fortunate", she said.
Hepatitis Foundation International
Hepatitis C Association
Hepatitis C Caring Ambassadors Program
National Digestive Diseases Information Clearinghouse (NDDIC)
Centers for Disease Control and Prevention
Isaac Itman is a writer for the OMHRC. Comments? E-mail: Isaac Itman
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