August 10, 2007
HEP C GOES TO WASHINGTON
|People with hep C will soon be knocking on D.C.'s door|
Though four to five million Americans have the hepatitis C virus (HCV), the federal government's response to the disease has been abysmal. One reason for the feds complacency? While there are various groups across the country pushing for better hep C prevention and treatment policies, there isn't a grassroots network of people living with the disease meeting regularly with federal legislators, a strategy that has proved effective for HIV/AIDS advocates.
But that's about to change. Hepatitis C Advocates UNITED!, a new grassroots coalition, is aiming to galvanize people with hepatitis C and bring them to Washington, D.C., to tell their elected officials about the struggles of living with the debilitating virus. The first three goals of UNITED! are securing funding increases for viral hepatitis programs in the final Fiscal Year 2008 Congressional budget, getting House and Senate cosponsors for the Hepatitis C Epidemic Control and Prevention Act and meeting with the Bush administration to urge the President to increase funding for viral hepatitis programs in 2009.
"People with hepatitis C need to be actively involved in speaking for themselves," said Lorren Sandt, UNITED! cofounder and Caring Ambassadors Hepatitis C program director. "For policy to change, there is a need for a loud, united voice."
People living with HIV/AIDS have a vested interest in the success of UNITED! One-quarter of all people with HIV/AIDS—250,000 people—are also coinfected with HCV. In many communities, HCV-related liver disease is the number one killer of people with HIV/AIDS. Hepatitis C can also lead to liver cancer or cirrhosis.
Sandt, who has been a hep C advocate since her brother was diagnosed ten years ago, said the need for such a network becomes painfully clear during appropriations time, when the disease is routinely shortchanged. HCV is the most common cause of chronic liver disease in the U.S., accounting for 40 to 60 percent of all cases. Early detection is key because many people are unaware that they are infected. HCV is often asymptomatic until advanced liver damage develops. Yet 75 percent of all health departments still don't possess the equipment to test for HCV. "We're not even asking for treatment," Sandt said. "Just education and prevention."
UNITED! wants to emulate HIV/AIDS advocacy in part because both viruses are blood borne and affect similar risk groups. It's no accident that two of the three network's organizers, Rose and Ryan Clary of Project Inform, work in the realm of AIDS policy.
Despite the similarities of HCV and HIV/AIDS, there are tensions between advocates for each disease. "Hep C-only people are a little envious of the care system HIV people have built up over the years," Rose said. "And HIV people are terrified of coinfection because they think it will expend every resource we've got. Instead of these two groups working together, they are working at cross-purposes all the time."
Sandt also acknowledges those tensions but insists HCV advocates don't want to take funding away from HIV/AIDS. "We want to model their successes, and hopefully not replicate their mistakes," she said.
Partnership between different disease advocates is essential to saving the U.S.'s splintered health system. "It's really exciting to be working on this grassroots partnership," said Clary, Project Inform's associate director of health care advocacy . "It goes along with our plan to unite coalitions in the fight for universal health care."
Rose said starting UNITED! is one of the most thrilling, frustrating projects he's taken on his career. "It's the first time there's been a grassroots Hep C group so at least we don't have to do things wrong that were done before," he said. "We'll do all new things wrong."
To join Hepatitis C Advocates UNITED! e-mail firstname.lastname@example.org with "Subscribe" in the subject field. In the e-mail put your first name (and last name if you are comfortable) and city/state. There will be a moderated listserv and monthly conference calls.