The Institute’s Hepatitis Policy Project has released a new report that features the stories of people affected by hepatitis C. The report was authored by Sonia Canzater and Jeffrey S. Crowley.
“Full of Life: The Stories of People Affected by Hepatitis C,” underscores the impact of hepatitis C and the potential for improving the lives of those with the disease.
The U.S. Centers for Disease Control and Prevention says more than 3.5 million Americans are living with hepatitis C in the United States. Because people with the disease can live for many years without symptoms or feeling sick, most do not know they have it. Hepatitis Testing Day serves to remind those born from 1945 through 1965 should be tested in accordance with CDC recommendations.
“Sadly, the persistent stigma around these facts overshadows and detracts from efforts to eliminate the disease. There is real harm caused by untreated hepatitis C, and treatments available today represent a true opportunity to improve lives of those living all around us,” says co-author, Jeffrey S. Crowley, program director of infectious disease initiatives at the O’Neill Institute.
The U.S. has the opportunity to play an integral role in the global mission to eliminate hepatitis C by prioritizing domestic elimination efforts, but the reality of what is happening to respond to HCV in the United States falls short of the possibility of what we could make happen to save lives and strengthen communities.
Lives like Jessica’s, Sharon’s and Jesse’s. Jessica was diagnosed with hepatitis C after her mom, Jay, fell ill from the disease. Neither knew they had it. Doctors believe Jay contracted HCV from a blood transfusion she had early in life and passed it to Jessica after becoming pregnant with her. Fearing she too would pass it on to her children, Jessica sought treatment but was told she wasn’t “sick enough” and that insurance wouldn’t cover curative treatment. With that denial, she was forced to start her family without treatment and is now a mother of two. Jessica is working with a hepatitis advocacy group assisting her in getting the HCV treatment she is entitled to, but has been unlawfully denied. Sharon is a cancer survivor who contracted hepatitis C after receiving transfusions related to her cancer treatment. Now also a hepatitis C survivor, Sharon’s favorite story is how she shared her experience and about the new treatments with a gentleman who revealed he had hepatitis C. She encouraged him to seek treatment. He did, and now he is cured! Jesse, is an outreach worker. He says he is not sure if it was intravenous “chaotic drug use” or his prison tattoos that exposed him to the virus. Many years later while in drug recovery Jesse was able to get insurance coverage through the Affordable Care Act (ACA). This enabled him to seek HCV treatment. Today, he is HCV free. He has graduated from school and plans to become a social worker like the ones who helped him without judgment during his “chaotic” drug use times, when no one else wanted anything to do with him.
The report with additional stories of those impacted by hepatitis C is now available online.
The views reflected in this expert column are those of the individual authors and do not necessarily represent those of the O’Neill Institute for National and Global Health Law or Georgetown University. This blog is solely informational in nature, and not intended as a substitute for competent legal advice from a licensed and retained attorney in your state or country.