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In the Trump Administration’s crusade to slash government spending, MaineCare and National Institutes of Health funding are at risk. My fellow Mainers and I, a young adult living with cystic fibrosis, depend on these two crucial programs.
Cystic fibrosis (CF) is a genetic condition that causes the buildup of mucus in the lungs; it used to be a childhood death sentence. Without the team of researchers at the NIH who discovered the CFTR gene, the cystic fibrosis story of innovation and progress would not exist. Thanks in no small part to the NIH, today we have lifesaving therapies that treat the underlying cause of the disease for 90 percent of patients.
But the CF story is not over. I fall into the final 10 percent of patients without an FDA-approved drug to treat the underlying cause of cystic fibrosis. With less NIH funding, my prospects for effective treatment grow dimmer.
Drugs, current or future, can’t work if we don’t have access to them. Nationally, Medicaid provides coverage for about half of children and about a third of adults living with cystic fibrosis. Frequent hospital stays, pulmonary exacerbations, and demanding treatment regimens can limit employment and health insurance options for people with CF.
I applaud Sen. Susan Collins’ willingness to fight cutbacks to NIH and MaineCare funding, and I hope her colleagues in Congress will follow her lead. The government should not take medical research and healthcare from Mainers who need it.
Rose Keller
Augusta