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WASHINGTON (May 18, 2018) — A new report published ahead of Hepatitis Testing Day on May 19 tells the compelling stories of several men and women who are facing down hepatitis C, revealing the need to do more to eliminate its damaging effects.
“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 report was prepared by the Hepatitis Policy Project at the O’Neill Institute for National and Global Health Law at Georgetown Law.
“We want people to realize that moms, dads, brothers and sisters who have hepatitis C can lead full lives, and that should be enough to motivate us to work harder to eliminate hepatitis C as a public health threat,” says report co-author Sonia Canzater, an associate at the O’Neill Institute who works with the Hepatitis Policy Project.
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, leader of the Hepatitis Policy Project and 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 as Canzater and Crowley write in the report, “…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.
“Hepatitis C not only affects people with the illness, but can significantly impact those around them. It is critical to head off this disease and reduce the burden it has on our families and communities,” says Crowley.
The report with additional stories of those impacted by hepatitis C is now available online http://www.law.georgetown.edu/oneillinstitute/research/hepatitis-c-epidemic/papers.cfm.
This project is supported by funding from Gilead Sciences, Inc. Gilead had no editorial control over the content of the report. Crowley received an honorarium from Gilead for a speaking engagement unrelated to this report. Canzater reports no recent personal financial interests related to the report.
The O’Neill Institute for National and Global Health Law at Georgetown University is the premier center for health law, scholarship, and policy. Its mission is to contribute to a more powerful and deeper understanding of the multiple ways in which law can be used to improve the public’s health, using objective evidence as a measure. The O’Neill Institute seeks to advance scholarship, science, research, and teaching that will encourage key decision-makers in the public, private, and civil society to employ the law as a positive tool for enabling more people in the United States and throughout the world to lead healthier lives.