Dozens of people gathered outside San Francisco City Hall Wednesday to raise awareness about hepatitis C and call on government officials to take action to ensure care for people that are suffering from the virus.
The event, organized by the city’s Hepatitis C Task Force, brought together people who have suffered from the virus and their supporters, including representatives of Mayor Gavin Newsom and Supervisor Bevan Dufty.
Hepatitis C is a virus that can lead to liver damage or liver cancer. Between 3 and 5 million Americans are infected with the virus, including 12,000 in San Francisco, according to the task force. It is the leading cause of death for people living with HIV.
About 15,000 Americans die each year from hepatitis B and C.
Randy Allgaier, a co-chair of the task force, said, “We are here today to give a voice and a face to an epidemic that still remains in the shadows.”
According to the Mayo Clinic, the hepatitis C virus is spread from coming in contact with contaminated blood from shared needle use, blood transfusions or organ transplants before 1992, when improved blood-screening tests became available, and in rare cases, sexual contact.
“There needs to be more awareness and education on hepatitis C,” Allgaier said. “There needs to be more prevention efforts, much more, and there needs to be more access to testing and treatment, and we must also take care of those who do not go into treatment.”
He said “there’s an enormous amount of ignorance, stigma, and misinformation about hepatitis C in our society, among our various communities, and even among medical providers.”
Dominique Rosa-Leslie, another co-chair of the task force, said she was an example of that problem. Rosa-Leslie said she was diagnosed with hepatitis C in 1990.
“I was told by medical professionals at that time that I shouldn’t worry about it and I didn’t need to do anything about it,” she said. “Fast forward a few years, by 2000 I was tired all the time, had swelling in my legs, and edema, and was still told that it wasn’t related to my hepatitis C.”
Rosa-Leslie also said a couple times she was refused treatment because she is transgender and said she joined the task force “so other people don’t have to go through the kind of discrimination I faced.”
Karen Aziz, another speaker at today’s event, said she was diagnosed with hepatitis C in 1999, and then diagnosed with breast cancer in 2006.
Aziz said “the disparity in how I was treated shows the lack of resources and public awareness about hepatitis C alters the care that you get.”
She said after being diagnosed with breast cancer, she learned that hospitals maintain support groups to help those with breast cancer, and that there are several sponsored walks to raise money for breast cancer research.
“You’re cast in roles once reserved for military heroes,” she said. “You were called a survivor, you were commended for your brave struggle, and people showed you love, support and compassion wherever you went.”
Aziz said this isn’t true for hepatitis C.
“I was told there was only one treatment, it only works for about half the people, and the side effects weren’t very bad, yet I was tired all the time but couldn’t sleep at night,” she said.
“Where were all the support groups, the walks for a cure? No company wants to sponsor a race for a cure for this disease or walk to support those who have it,” she said. “You are not called a survivor, and the struggles you have with this disease are secret, silent, lonely, unsupported and uncared for.”
Allgaier said the task force hopes to make people realize that “we can do more and we must do more” to help prevent and treat hepatitis C.
“San Francisco must move out of the shadows of the silent epidemic,” he said. “Shine a light on it, and break the silence, because as we learned with HIV, silence equals death.”