Donna Cowan founded the group “Delco Hep C Connect” in Aston, Pennsylvania last fall. She says she saw a gap that needed to be filled; helping others who have the same disease she struggles with get past the hurt, the emotional roller coaster, and the unanswered questions about hepatitis C.

Cowan derives much of her inspiration from another Philadelphia-area woman facing hepatitis C who garnered headlines two months ago. Mary Kohler, a city paramedic who believes she and dozens of local firefighters contracted the virus on the job, staged a high profile sit-in outside the office of Philadelphia mayor John Street.

Her protest was prompted by threats that her sick leave had expired and that she might lose her job. Additionally, the city refused to provide benefits to affected firefighters, demanding proof that they contracted the disease on the job. Instead, Kohler protested, camping outside Street’s second floor office for two weeks.

In the end, her relentless vigil paid off in the form of a proposed state law that would provide workers’ compensation benefits to city workers with HCV, and shift the burden of proof about how workers contracted the disease to the city.

Cowan and other members of her group meet at a local firehouse once a month, but she is considering twice weekly gatherings.

She says her own efforts to provide a service and support to others in her area with hepatitis C have been extremely rewarding. “The response I have [had] is unbelievable,” she said. “I probably have one of the largest groups in this area.”

During their meetings, topics range from financial issues to disability assistance to medication questions. “We are not licensed doctors, and we are not lawyers,” she said. “If we don’t have the answer, we will find somebody in a professional position to find you the answer.”

She also advocates active patient participation in healthcare settings. “Ask those questions,” she insists. “A lot of people are intimidated by physicians. Ask those questions, and take control.”