Advocacy

The Massachusetts Hepatitis C Coalition:

Hepatitis advocacy in Massachusetts, like many other states, faces an uncertain future. The Massachusetts Hepatitis C Coalition (MHCC) was organized and funded by Schering-Plough, the pharmaceutical giant with a big stake in hepatitis treatment, beginning in 1999. I led the fight to remove Schering-Plough from the MHCC's leadership because it was funded by their marketing division, which undermined their credibility as "grassroots" organizers. The drug industry has a long history of funding grassroots "fronts" and consumers who do their bidding. For more information on Schering Plough's role, check out

www.washingtonpost.com/ac2/wp-dyn/A52480-2000Sep11?language=printer

The Massachusetts Public Health Association took over the MHCC but was no more successful than Schering-Plough. They relied too heavily on AIDS organizations, the Boston-based AIDS Action Committee (AAC) in particular, for direction and support, and the AAC proved unwilling to do anything that might take attention away from their agenda. I had to fight to get hepatitis language included in public health legislation because the Hepatitis C Coalition and the Mass. Public Health Association were too cowed to press the issue with the AAC. Service providers and public health employees who built careers around the AIDS epidemic and who controlled the Coalition did their best to marginalize independent consumer voices who called for more balance and fairness in public funding.

The Hepatitis C Coalition disbanded in January of 2008 after years of vaporous leadership and little to show for it. The American Liver Foundation reneged on an agreement to sponsor it, then the Chair was pressured into resigning (see "Letters To Peter").

It is not easy standing up to powerful and entrenched special interests, but the AIDS lobby controls the infectious disease agenda here and nationally, and will continue to unless hepatitis advocates fight for recognition, fairness, and independence. We need a level playing field, and most important, we need to take responsibility and make sacrifices to bring leadership to hepatitis advocacy when others cannot or will not.

Mass. hepatitis patients interested in forming a consumer-based coalition should contact us. There is discussion about reorganizing the MHCC and it is important that consumers have a more unified voice in the future.

The Massachusetts Dept of Public Health's Hepatitis C Advisory Committee.

The Hepatitis C Advisory Committee (HCAC) was formed by the Massachusetts Department of Public Health to bring together policy makers, service providers, and consumers. It meets sporadically and has been more open to critical discussion and consumer diversity than the former Hepatitis C Coalition. Participants are updated on DPH activities related to hepatitis, and advise the DPH on priorities. The DPH has a website that offers useful information about hepatitis and locations for counseling and testing sites. People living with hepatitis are encouraged to use this valuable resource.

Posted: Wed, Jun 11, 2008 09:11 AM
Updated Sat, Mar 14, 2009 12:00 AM