Senate adopts resolution commending rare-disease research and patients

The Washington State Senate on Thursday adopted Senate Resolution 8622 commending efforts to find cures for rare diseases and urging Washingtonians to recognize the struggles of patients and families.

The resolution notes the scope of rare diseases and the challenges patients face. It was adopted by voice vote after floor remarks from Senator Lynda Fortunato, who moved adoption.

SR 8622 recites findings from federal agencies and federal law, including statements attributed in the resolution to the National Institutes of Health and the Food and Drug Administration and a reference to the Orphan Drug Act. The resolution says there are "nearly 7,000 diseases and conditions considered rare, each affecting fewer than 200,000 Americans," and that rare diseases as a group affect "25 to 30,000,000 Americans and 750,000 Washingtonians." It also notes that the FDA has approved drugs and biologics for more than "880 rare disease indications," while saying millions still lack approved treatments.

Senator Lynda Fortunato spoke in support of the resolution and described her family's experience: "My grandson is one of 1,200 in the entire world. He has a special syndrome ... his brain does not tell him to breathe." Fortunato said the condition required a tracheotomy, continuous oxygen monitoring and a ventilator when the child sleeps, and that the family had to work with clinicians and insurers to have the condition recognized as a rare disease.

The resolution calls on Washingtonians to "recognize the struggle of those afflicted and their families and to commit for a future of hope through compassionate care for our neighbors and scientific discovery." The secretary read the resolution into the record before the floor voted.

The motion to adopt SR 8622 was made by Senator Lynda Fortunato and adopted by voice vote; no roll-call tally was recorded on the floor record provided.