By Sally Greenberg, NCL Executive Director
I heard a lot of inspiring speeches yesterday at the annual meeting of Pharma companies. Congressman Butterfield from North Carolina talked about his district, which is one of the five poorest in the United States, where health care is unavailable to many of his constituents. He supports the health care reform bill that is likely to pass shortly in the House and Senate. The Governor of West Virginia, Joe Manchin III, spoke as well, talking about the new comprehensive program they’ve launched in that very poor state. The governor says it will cover anyone “who goes to work every day.” The governor pointed out that while the poor can get health care (not always), older Americans have access to Medicare, babies and children have S-CHIP, but everyone in between can’t get coverage, and many workers are too poor to pay health care premiums and get coverage. He talked about the importance of covering dental care, which is a window to good health overall. Good dental health can prevent a lot of dental and other diseases down the road.
Parents of children with rare diseases spoke, and their accounts were heartbreaking. One couple had lost their 24-year-old son recently; another is fighting to save their 13-year-old who suffers from a disease that ages children prematurely. I admired their bravery, their strength, their commitment to trying to find a treatment and cure for these diseases, whose results may show up long after the loved one or relative has died.