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Hepatitis threatens to become the next major epidemic in the United States. This dire warning comes from a source quite close to home, the 1999 Berkeley Health Status Report, authored by the city’s Health Department. 

But thus far no funding has been dedicated to education about the disease, and hepatitis C coordinators in Berkeley and Alameda County are patching programs together, seemingly out of thin air. 

Susan Black, the hepatitis C program coordinator for Alameda County, runs what she joked is “the lack of a program.” There are 28,000 people diagnosed with hepatitis C in Alameda County. According to Black, the disease is chronic for 23,000 among them and between 1,200 and 1,400 of these people will develop cirrhosis of the liver.  

The 1999 health study showed 102 cases of hepatitis C for 1998 in Berkeley, making it the second most prevalent communicable disease after chlamydia.  

“I think that what’s really crucial in that whole set of numbers,” said Black, “is that the government estimates that 75 percent of people infected don’t know.”  

Not knowing, she said, makes the risk of infecting others higher, and also means that people wait until the disease has progressed before beginning to take steps to limit its effects.  

Hepatitis C is transmitted through exposure to blood; its primary modes of transmission are from needle-sharing and, before blood was tested, from blood transfusions. The C virus is rarely transmitted sexually, unlike the hepatitis B virus. Blea said that in Berkeley they haven’t seen any cases of hepatitis C that were sexually transmitted. 

Former Assemblymember Audie Bock introduced legislation to fund hepatitis C programs, but the funding bill failed. 

“Part of what we heard is that there is not a very positive reception among the legislators to the problems of hepatitis C,” said Black. “Which is not surprising because hepatitis C is affecting the underdog population, an easy group of people to ignore.” Most new contractions of hepatitis C are transmitted through needle-sharing. Black said this leads people to see it as a “junkie” disease.  

Another problem with seeking funds, is the lack of treatment options. Currently a combination of drugs can be used to help treat the disease, but the patient has to be extremely stable due to the depression-inducing side effects. Lack of treatment may make the government hesitate to provide funds for education, which will increase the demand for testing. New testing demands will force the government to provide funds to test for a disease that legislators may perceive the medical community can’t do anything about. 

But testing is extremely important, said Blea. People who are positive can make important lifestyle changes to impact their health. “Anything that stresses the liver out can be very significant,” he said. This includes both alcohol use and stress. 

Blea said that about half the people the Berkeley program tests at its needle exchange and HIV prevention site are infected with the virus. This is still less than the 90 percent who test positive in the county testing project for high risk people.  

“What we have found is people who have shared needles any time from the 60’s on are at very high risk even if they stopped 20 years ago,” she said. “It’s a very efficient virus.” 

Catherine Swanson co-coordinates a hepatitis C education project at the Berkeley Free Clinic. She added that “hepatitis C can be transmitted through snorting drugs and sharing snorting equipment. People don’t get it. People are pretty clear from the past ten years that sharing needles is dangerous but they don’t realize that sharing straws is dangerous.” 

And, she added, “a lot more people snort than shoot up.”  

Hepatitis C can take between 10 and 20 years, before beginning to cause symptoms including jaundice, fatigue, and liver failure. The long dormant period helps explain the fact that the vast majority of Berkeley residents with hepatitis C are over the age of 30, and over half of them are 45 years old or older, said LeRoy Blea, AIDS director for Berkeley.  

Prior to 1992 blood wasn’t tested. Anyone who received a transfusion before that time may be at risk, said Blea. 

One particular group at high risk for hepatitis C are Vietnam veterans, because of the amount of needle use during the war, and transfusions that took place prior to blood screening. “It was a very bloody war,” said Black. 

In Berkeley, the hepatitis program targets syringe exchange sites, and STD and HIV clinics.  

Although they have no special funds for hepatitis C, public health nurses and community health outreach workers got together to learn about the virus so they could include information in their regular work. The manufacturer of a hepatitis C screening test donated free tests, and Blea got permission to use the HIV counselors to counsel hepatitis C positive people as well. But limited resources means only people who have shared injection needles can get screened without cost. Educators agree, eventually money must come from somewhere. 

But Black hopes that the money won’t be diverted from other important health projects. 

“One of the problems is people talk about using HIV funding,” she said. “It shouldn’t be this disease against that disease, it’s not the same disease, it’s not the exact same population, and it needs its own funding.” 

She wants funding for education and for screening. Otherwise, she said, “In another five years we’re going to have a huge bill for hospice care and all the problems that go with debilitating illness. If we pay later the price is going to be much higher.”