After doctors first identified the signs of AIDS in 1981, there were several painfully lean years before the government and the general public significantly mobilized behind the disease. But even if progress seemed agonizingly slow during the mid 1980s, the time it took to garner support is a blink of an eye when compared to the sluggish advancement made by the hepatitis C movement in recent years.
Physicians initially recognized the hepatitis C virus as early as the late 1960s, but the virus was not isolated until 1988. Highly conservative estimates place the number of Americans infected with HCV at 4 million. (There are no specific figures because of a lack of proper surveillance of the virus.) An estimated 20% to 30% of the nearly 1 million HIV-positive Americans are coinfected with hepatitis C, which is transmitted mostly through injection-drug use. Currently, about 25% of all AIDS deaths are caused by HCV-related liver disease.
Despite these stark figures, there is no national representation for hepatitis C along the lines of the American Foundation for AIDS Research or AIDS Action, and only a handful of disconnected regional nonprofit organizations are fighting for the cause. Just five states in the nation earmark funding for the disease'averaging less than $1 million each. The federal Centers for Disease Control and Prevention gives just enough money for a salary and some peripheral expenses to supply almost all states with a hepatitis C coordinator. But other than that, states receive no federal assistance and must either siphon funds through existing health department funding streams (essentially a case of robbing Peter to pay Paul) or just sit and dream.
Some, though, have dreamed big. In the past few years individual states have jumped on the bandwagon to write what is known as a strategic plan in their embryonic efforts to combat viral hepatitis. The plans usually focus on hepatitis C but often include measures for the A and B strains as well, which are each less prevalent and less deadly than HCV. Fourteen states have already written a strategic plan, five have one in progress, and six intend to begin the process this year. Furthermore, in December 2003 the National Viral Hepatitis Roundtable convened over 100 organizations and agencies from around the United States to begin plans to create a national strategy.
How It All Would Work
The purpose of these strategic plans is to create a blueprint for how each state would like to address its hepatitis problem: plotting methods for surveillance, testing, access to treatment, education for those at risk as well as for medical professionals, and so on. But would like to is the operative phrase. While well-intentioned, many of the plans' goals are wishful thinking, fantasizing about all the ways a state's public-health departments could stem the disease'if only state or federal dollars would flow (or maybe just trickle) in. Public-health officials in some states even say they have written their plans with the hopes that the document will convince state legislatures to provide funding.
Well, it is not happening. State budgets simply have no room for new causes in the face of a sluggish economy.
Joey Tranchina, head of the Hepatitis C Global Foundation, contributed to the California plan and says of the resulting document, 'Ultimately, it's like a care package full of menus. This is the strawberry shortcake you could be having for dinner. Because there's no money.'
Tranchina is not the only skeptic. 'I think probably the majority of recommendations are really contingent on funds,' says Laurie Schowalter, viral hepatitis program manager at the National Alliance for State and Territorial AIDS Directors and vice chair of the National Viral Hepatitis Roundtable's national strategic planning committee. 'It's just going to be impossible to really develop any strong, coordinated program without money.'
One test case shows that even a modest infusion of cash can yield great progress. Texas, following a series of legislative victories in 1999 and 2001, was for a brief time the front-runner in the nation when it came to fighting hepatitis C. The state's health department orchestrated a powerful anti-HCV public-health campaign with'at its peak'$3.5 million in state funds annually. The department developed a comprehensive screening program and thoroughly analyzed the data. It also put out public service announcements on television, established a toll-free hotline and Web site, sent mailings, translated its brochures into multiple languages, and provided counseling and testing programs. The state's strategic plan, written in December 2002, further solidified its commitment to future progress.
Falling on Its Face
But now the document is a symbol of lost dreams. Thanks to a state deficit, the Texas legislature cut off all hepatitis funding as of January 1. Free counseling and testing is no more, and according to Texas Department of Health epidemiologist Gary Heseltine, 'At this point in time we're being creative and doing what we can on a very limited budget.'
By limited, he means the money has to come from somewhere else within the state health department budget. And fortunately, there are things that can be done without new money, though this may mean another disease loses out on resources. Hawaii, for example, trained its HIV counselors to identify those at high risk for hepatitis A and B and to give them free vaccines, which are already state-funded. Texas has in place a statewide mandate that all 119,000 registered nurses must receive hepatitis C training in order to renew their licenses. And while New York also has no specifically earmarked state funds for hepatitis, it addresses the disease in a variety of programs that are funded through the Bureau of Communicable Disease Control.
Finding the Good Points
One promising benefit of the plans is that they bring together a wide variety of organizations, leading at least to the heightened expectation of improved cooperation, synergy, and collective activism. Some activists privately fault people who work on HCV issues for a reluctance to cooperate with one another, which they say leads to infighting and competitiveness.
Another form of cooperation that the plans address is the critical need to integrate the hepatitis C cause into the existing HIV public-health infrastructure, since the risk factors for the two viruses overlap so significantly. To some, the promise of joining the HIV fold is like a free meal ticket, but others are skeptical.
Andi Thomas, executive director of Miami's Hep-C Alert, is an avid supporter of HIV-HCV plan integration but reports frustration in getting HIV activists excited about a new disease. And as an HCV-infected 45-year-old, she is concerned that HIV services do not address the baby boomer population outside of gay white men. Due largely to injection-drug use in their younger years, an estimated 3% of Caucasians and 6.3% of African-Americans between 40 and 59 are HCVinfected'compared to 1.8% of the general population'and most of the boomers do not know they are infected.
Integration, according to Thomas, 'reaches only people who have a risk today. And there is a 40-to-59-year-old age group who are just disenfranchised.'
Wishing for the Best Outcome
Many states are crossing their fingers that a pair of companion bills introduced in the U.S. House and Senate'the Hepatitis C Epidemic Control and Prevention Act'will lead to a permanent funding stream from the federal government. The bill has garnered bipartisan support from the likes of Texas senator Kay Bailey Hutchison and Massachusetts senator Edward Kennedy'not bad for a bill that would promise $90 million a year to address public-health efforts for a disease that mostly affects injection-drug users.
Oddly enough, even though advocates who devote their lives to bringing attention to HCV have been championing the bill on Capitol Hill for about a year and a half, such as Lorren Sandt, president of the National Hepatitis C Advocacy Council, Sandt and others credit a group of teenagers for truly bringing the matter into the limelight. A group of Fairfax County, Va., high school students, as part of a school marketing club project known as DECA, contacted a receptive Senator Hutchison and promoted the bill in a gathering on the Capitol lawn in December 2003. It was only after the involvement of 'the DECA kids,' as they are affectionately known, that the ball really got rolling in Congress and hearings were planned for the bill, Sandt and others say.
Their work provides an ironic metaphor for the infancy of HCV activism. 'We're in kindergarten,' says Thomas of the movement. 'Hep C needs a home.'
You Should Know
Researchers have discovered that individuals who are coinfected with HIV and hepatitis C are more likely to develop diabetes than patients who have only one of the viruses (16% for HCV infection only, versus 29% for coinfected study participants). In the study, presented at the 41st annual meeting of the Infectious Diseases Society of America, incidence of diabetes or glucose intolerance among coinfected participants was found to be high even when researchers controlled for elevated body mass index and a family history of diabetes, indicating an independent association of HIV-HCV infection with the development of diabetes.