Cancer patients have a voice in health care legislation
When Michelle Morse was diagnosed with colon cancer while a full-time student at Plymouth State University in New Hampshire, her doctors recommended she take time off from school.
By doing so, however, Michelle would lose her health insurance. So her mother gathered a team of local legislators, medical and professional organizations, and media experts who petitioned the New Hampshire state legislature for changes.
Thanks to this activism, NH Bill 37 was passed in 2006, allowing college students in the state to take up to a 12-month medical leave of absence without health insurance implications. A similar bill is now before the US Congress.
Today, Dana-Farber's Legislative Action Network (LAN) can make this type of advocacy much easier. Launched in September 2008, the LAN helps patients, families, staff members, and others learn about cancer-related bills and laws, and identifies ways they can voice their support or opposition.
The LAN is centralized through an interactive Web site that highlights potential legislation that affects cancer patients. It features current bills before the state and federal legislatures, such as a proposal for Medicare to cover the treatment summaries and follow-up care plans needed by cancer survivors. The LAN also plans to organize workshops and other learning opportunities.
Eric Rodriguez of Dana-Farber's Pediatric Patient and Family Advisory Council.
"It's important for people to understand that they don't need special training or a degree in political science to join the LAN," says Anne Hristov, an attorney and member of Dana-Farber's Adult Patient and Family Advisory Council, who proposed the idea. "All you need to get involved is your story, your personal experience, and your commitment to fight for improvements in cancer care and funding."
Members of the Legislative Action Network can use the Web site to learn the basics of advocating for public policy initiatives and find resources for getting involved in whatever capacity they feel most comfortable. They can express their opinions on the site, make a phone call or send an e-mail to a legislator, join a rally, or even show up at their state or capitol building to give testimony.
Generally, network members agree, nothing resonates more with a lawmaker than a personal story.
"Patients, staff, and survivors can put a face on a disease or cause, and politicians recognize our voting power," says Eric Rodriguez, co-chair of Dana-Farber's Pediatric Patient and Family Advisory Council.
For example, thanks to advocacy from families and staff, a 2006 pediatric palliative care law in Massachusetts did away with the agonizing "all or nothing" choice between hospice care and cancer-directed therapies, allowing a blend of services aimed at quality of life.
Hristov suggested the LAN in 2006 to Anne Levine, Dana-Farber's vice president of External Affairs, who liked the idea and assembled a planning group. After teaming up with Rodriguez, Hristov wrote a formal plan, and the project began to take shape as a joint effort from the adult and pediatric councils.
"When it comes to ensuring that programs, policies, and funding are aimed at cancer prevention, treatment, research, and survivorship, the message is more powerful when legislators and other policymakers hear from those who are directly affected," says Levine. "The LAN aligns with our mission as a cancer center: to empower patients and staff to have a voice."
— Christine Cleary
christine_cleary@dfci.harvard.edu
