Kathy Stone is a freelance health and science writer who managed the AAN's news informational services from 2000 to 2004.
When James Grisolia, M.D., meets with public officials to discuss healthcare legislation, he likes to have his epilepsy patients join him. Legislators are used to looking at things from the “10,000-foot view,” says the San Diego neurologist. “When we go in as physicians, we're respected and they listen. But when they meet a person who can't talk or can't go to work as a consequence of not getting their meds, it's an education for them.”
Dr. Grisolia, a board member of the California Medical Association, volunteers with the California NeuroAlliance — an innovative coalition of patients, physicians and patient advocacy organizations banding together to improve the lives of people with neurological disorders. Their mission: working with lawmakers to improve patient access to quality healthcare.
The NeuroAlliance estimates that three million Californians are affected by neurological conditions. But that statistic hardly tells the real story of the needs of individual patients.
The NeuroAlliance aims to help advocacy organizations make sure policy makers hear and address those patients' healthcare concerns, says Eric Hauth, senior state affairs manager for the American Academy of Neurology (AAN) and co-leader of the NeuroAlliance since its inception six years ago.
That entails coming up with meaningful data on neurological issues, such as access to insurance, specialists and affordable medicines. The NeuroAlliance has responded by developing an online survey to be launched at its annual California Policy Conference and Lobby Day this spring in Sacramento. The survey allows patients and caregivers to express views on what is and isn't working in the healthcare system. The information will be used to educate elected representatives and private healthcare organizations on patient care and inadequately met needs.
Patients and neurologists alike are being squeezed by federal and state budget cuts, says NeuroAlliance volunteer Rebecca Hanson, M.D., a child neurologist at Mattel Children's Hospital at the University of California–Los Angeles. After governments reduced reimbursement to physicians treating patients covered by Medi-Cal (California's name for Medicaid), many neurologists are “struggling” to serve their patients and keep their practices thriving, she adds. Patients, too, are being asked to shoulder a greater share of skyrocketing healthcare costs. That's making healthcare less affordable for more people.
“It's becoming a service available only to the wealthy,” says Dr. Hanson, stressing the importance of working with patients, advocacy groups and other physicians on joint concerns. “By working together rather than separately, we have a lot more power.”
The goal is to improve the quality of life for people with neurological conditions by educating policy makers on patients' access to healthcare and insurance coverage, affordability of medications, transportation and caregiving needs, and coexisting conditions such as depression.
The NeuroAlliance has solidified into a coalition speaking in a loud unified voice through education, advocacy and public awareness campaigns. Currently, it's supporting a nursing home patient Bill of Rights and the preservation of Medi-Cal reimbursement for neurologists and other providers. NeuroAlliance co-leader Stewart Ferry, policy director of the National Multiple Sclerosis Society's northern California chapter, says Medi-Cal reimbursements are lowest for neurologists among medical specialties. That limits not only the number of Medi-Cal patients neurologists can treat, but also the amount of time that can be spent with each patient.
Along with the Association of California Neurologists, the NeuroAlliance partners with almost a dozen disorder-specific service and advocacy organizations. As the first coalition of its kind, Hauth feels it “can serve as a model for other states.”