While expecting their first child, Mary DeFalco and her husband, Lou, learned they were carriers of a gene that causes cystic fibrosis — a genetic disease caused by inheriting a mutant gene from both parents. Their doctor had told them there was a 25 percent chance their child would have the disease, which causes thick, sticky mucus to clog the lungs and part of the digestive system. But like all couples, they had hoped for a healthy pregnancy.
Nearly two years later, during Mary’s second pregnancy, she and Lou learned that their second child, Dylan, would also be born with the condition.About 10 weeks after their son Michael was born at 7 pounds, 3 ounces, he started showing symptoms of the condition. He had trouble digesting food and his height and weight were much lower than other infants his age. At 2 months old, he had gained only 2 pounds since his birth. His physician, after conducting a series of diagnostic tests, had determined that Michael had cystic fibrosis.
Today, Michael, 4, and Dylan, 2, live in Woodridge, Ill., and consume about 1,500 pills a month to aid their growth and digestion. They also depend on the latest advancements in science and medicine for new and potentially life-saving therapies.
“When you have two children living with cystic fibrosis, a cure cannot come fast enough,” said Mary DeFalco, 33, a stay-at-home mom, who helps coordinate her boys’ medications and breathing treatments. Lou DeFalco works as a senior manager at PricewaterhouseCoopers LLP, one of the world’s largest providers of business consulting services.
But finding enough money to research the disease is almost as hard as finding a cure, and the government budget crisis isn’t helping.
The continuing resolution bill passed by Congress in early April averted a government shutdown. But among its mandated $40 billion spending cuts are cuts to the National Institutes of Health, which funded nearly $100 million in cystic fibrosis research last year.
Siphoning money from science and medical research, two of America’s most precious commodities, may be setting a dangerous precedent.
Under the bill, the NIH – the world’s largest source of funding for medical research – took a $260 million hit, a 0.8 percent cut from the previous fiscal year. The National Science Foundation, which funds about one-fifth of all federally funded science research, lost $67 million, or 1 percent from last year. These cuts are in addition to a 0.2 percent across-the-board slash on all non-defense programs.
“All the easy cuts are gone – now we’re into the hard stuff,” said Chris Stenrud, the deputy assistant secretary for public affairs at the U.S. Department of Health and Human Services, which comprises the National Institutes of Health and other operating divisions. “We would not have agreed to those cuts under better circumstances.”
Officials from the National Institutes of Health said they were not yet sure how the cuts would be allocated across the 27 institutes and centers.
While many experts argue the cuts are negligible, others remain fearful the federal government is tapping funds in places it shouldn’t, jeopardizing the nation’s role as a world leader and science and medical research.
“NIH funding has been crucial in making the advances we’ve made,” said Manu Jain, a cystic fibrosis expert and associate professor of medicine and pediatrics at Northwestern University’s Feinberg School of Medicine. “A cut in funding to NIH will impact the pace of discovery and the breadth of investigation.”
Dr. Susanna McColley, the head of the division of pulmonary medicine and director of the Cystic Fibrosis Center at Children’s Memorial Hospital in Chicago, also said that government funding for medical research plays an important role in our understanding of diseases.
“The importance of NIH research funding is that it goes to answer the root causes of disease,” McColley said. “There has already been poor growth in NIH funding. I think we owe it to the people of the U.S. to be leaders in medical science.”
The National Institutes of Health has a rich history of funding research that has advanced scientific understanding of diseases. In 1989, scientist Francis Collins, now the director of the NIH, and his colleagues announced they had discovered that mutations in a specific gene caused cystic fibrosis. The institutes funded this study and other hallmark studies, including the Framingham Heart Study and Human Genome Project.
“The National Institutes of Health funds quite a bit of research that benefits cystic fibrosis patients,” said Eric Chamberlain, a grassroots advocacy coordinator at the Cystic Fibrosis Foundation in Bethesda, Md., an organization that lobbied against cuts to this year’s research budget. “It’s important to make it clear to Congress these cuts will be harmful to the foundation.”
The Cystic Fibrosis Foundation, which the DeFalcos and other families look to for support, has become a driving force on Capitol Hill and in laboratories. Last year, the foundation spent nearly $200,000 on lobbying efforts, according to the Senate Office of Public Records. And this spring, the foundation, while working in collaboration with Vertex Pharmaceuticals, announced favorable results from one of its late-stage clinical trials.
For the upcoming 2012 fiscal year, President Obama is requesting the National Institutes of Health receive almost $32 billion in funding, which is about $20 million less than last year’s request. The budget request has been sent to Congress for review, and the new fiscal year begins on Oct. 1.