Drug Puts a $750,000 'Price Tag on Life'
The drug Spinraza isn't a cure for spinal muscular atrophy (SMA), which affects 10,000 people in the U.S., but clinical tests show it holds promise for some. Dr. Susan Apkon, who treats dozens of children with SMA as a physiatrist at Seattle Children's Hospital — and who urged Washington state's Medicaid pharmacy board to cover the drug — says there is no easy answer for the questions revolving around the drug. "If a drug works, we want to give it to the child or adult, whatever the drug is," says Apkon, who does not receive money directly from Biogen but is a co-investigator in one of the company's ongoing studies. Still, "there is one pot of money, and we need to figure out how it gets distributed," she says. "The system is broken."
About Seattle Children’s
Seattle Children’s mission is to provide hope, care and cures to help every child live the healthiest and most fulfilling life possible. Together, Seattle Children’s Hospital, Research Institute and Foundation deliver superior patient care, identify new discoveries and treatments through pediatric research, and raise funds to create better futures for patients.
Ranked as one of the top children’s hospitals in the country by U.S. News & World Report, Seattle Children’s serves as the pediatric and adolescent academic medical center for Washington, Alaska, Montana and Idaho – the largest region of any children’s hospital in the country. As one of the nation's top five pediatric research centers, Seattle Children’s Research Institute is internationally recognized for its work in neurosciences, immunology, cancer, infectious disease, injury prevention and much more. Seattle Children’s Hospital and Research Foundation works with the Seattle Children’s Guild Association, the largest all-volunteer fundraising network for any hospital in the country, to gather community support and raise funds for uncompensated care and research.
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