Medical Research Cuts Hit Home

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Weston residents whose granddaughter suffers from a rare genetic disorder are urging the congressional delegation to fight for restoration of federal medical research funds.

Eugene and Carol Schwartz met briefly with Congressman Jim Himes at his Kiwanis talk on March 8 and presented him with a letter previously sent to Senators Chris Murphy and Richard Blumenthal.

Lily, the couple’s three-year-old granddaughter, was diagnosed at age two with KAND, a neurodegenerative disorder that can be inherited or, as in Lily’s case, occur spontaneously.

Effects of KAND range from developmental delays, movement disorders, muscle weakness, seizures, cognitive difficulties and respiratory problems to severe disabilities and a shortened lifespan.

The federal rollback of research funds have stymied efforts led by a clinical and molecular geneticist at Boston Children’s Hospital to develop treatments for Lily’s life-altering condition.

In their letter, Mr. and Ms. Schwartz write that a “sudden and illegal change to the contractual agreement between the government and research institutions was another devastating blow to researchers and their institutions.” They ask the senators and congressman to “immediately take action to compel an end to the funding freeze and the threats to cut grant expenditures.”

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“Unconscionable”

“It’s bad enough when you read about air traffic controllers being fired,” said Congressman Himes. “But when you tally up the brutal human cost to children in particular who are struggling with difficult diseases, it’s unconscionable.”

“They are doing tremendous damage to lots and lots of people, including the Schwartz family,” said Mr. Himes.

The congressman had just met a young man who suffers from Duchenne Muscular Dystrophy, a severe, progressive muscle-wasting disease also caused by a genetic mutation. Private insurance typically doesn’t cover cutting-edge treatments, so his therapies are funded by Medicaid. “Medicaid cuts would eliminate his medication and access to treatment,” said the congressman.

Mr. Himes said development of drugs and treatments usually begins with research at the National Institutes of Health. “All sorts of those research projects, most famously on children’s cancer, have been stopped. Researchers have been told to stand down.”

Speaking of federal job cuts in general, Mr. Himes said, “The sad thing is that this could have been done smart.”

“All governments get a little top heavy, a little inefficient. So, of course there is room to make the government more efficient. If you do it wisely and save taxpayers money, that’s great. I would have loved to have been part of something that was smart and careful.”

“But that’s not what this is.”