Hesitant fingertips trace the outline of a new facial tumor. Still only the size of a pea, this new growth is one of hundreds of tumors marring 46-year-old Steven Prebus’s body. The lumps speckle his face, arms, and back. He’s frightened that the ones on his eyelids will someday impact his sight.
Prebus was born with type I neurofibromatosis, a disorder allowing tumors to grow anywhere in his nervous system. Although these growths are usually not cancerous, they’ve caused Prebus to grow up with learning disabilities and continual discomfort. “I’m in constant chronic pain all the time,” he says. “There’s really not much [doctors] can do except maybe remove [the tumors], and even then there’s a chance they’ll grow back anyway.”
Scientific research could lead to new breakthroughs for neurofibromatosis and many other conditions. However, scientists and patients like Prebus fear that a continuing downward trend in federal funding hinders progress toward new treatments. Many have begun taking matters into their own hands, lobbying in Washington D.C. or fundraising so they do not feel dependent on federal funding.
Federal funding for the sciences has been deteriorating over the last decade. Across-the-board budget cuts known as the sequester took effect in March 2013, leaving scientific funding at its lowest level in 40 years. This resulted in significant cuts from federal research agencies like the National Institutes of Health (NIH). The NIH funded 703 fewer research grants in 2013 after the sequester slashed its budget by about 5.5%, or $1.6 billion.
Michigan universities have not been immune from these budget cuts. “We rise and fall on what the NIH does” says Vic DiRita, Associate Dean of Graduate and Postdoctoral Studies at the University of Michigan Medical School. “Nobody’s immune from this whatsoever. Anybody who thinks they are is kind of whistling past the graveyard,” he says.
The Jan. 2014 budget deal provides scientific agencies a slight boost in research funding. However, biomedical research support still falls far below pre-sequester levels. Scientists applying for research funding from the NIH during 2013 had a 16.8% chance of receiving support–a historical low. The 2014 budget will allow the NIH to support 385 more grants in 2014. This is still below 2012 levels, but scientists think it could be a step in the right direction.
Many researchers and patients like Prebus are beginning to recognize that the lack of federal funding for medical research may be a long term problem. “That’s why we decided to do our own fundraisers and our own kind of things to keep the money coming in,” Prebus says.
Prebus has been an active participant in fundraising events sponsored by the Children’s Tumor Foundation, the largest non-government funder of neurofibromatosis research. The next scheduled event is the Detroit Cupid’s Undie Run on Valentine’s Day Weekend. Prebus will join other neurofibromatosis patients, families, and supporters for a one mile jog through the crisp winter air—in his underwear. The Undie Run events will take place all across the United States. The Foundation hopes to raise over $1 million in a single weekend.
Money raised by the Children’s Tumor Foundation supports preclinical and clinical drug trials for neurofibromatosis. They’ve raised over $2 million in the last three years for research. However, this funding remains insignificant next to federal funding. The Department of Defense (DOD) Congressionally Directed Medical Research Program is the largest federal funder of neurofibromatosis, surpassing even the NIH. This year alone their neurofibromatosis research budget was $15.
The DOD program funds research for a number of different conditions, including autism, lung cancer, and multiple sclerosis. Each year the amount of funds allocated to each condition are renegotiated in Washington D.C. The Neurofibromatosis Network concentrates its efforts on lobbying for continued federal funding in Capitol Hill. “[We] send people to the hill every Feb. to fan out and talk to the congressional representatives…to introduce them to neurofibromatosis,” says Rosemary Anderson, the president of Neurofibromatosis Michigan.
This year, patients taking the trip to Washington D.C. will tell representatives how the funding situation is harming neurofibromatosis research taking place within their own community. Kate Barald, a cell and developmental biology professor at the University of Michigan, has helped develop a drug that could someday be used to treat neurofibromatosis. Barald and coworkers in the United Kingdom have found a way to alter 2-Methoxyestradiol, a natural anticancer drug produced by our bodies. Previous clinical trials showed that the original drug can be effective against a number of different types of cancers. However, Barald’s improved version of the drug is even more effective. It can be taken orally and resists breaking down too quickly in the body. Best of all, it appears it could target more types of neurofibromatosis tumors than currently marketed drugs.
Barald and coworkers are getting ready to publish their initial results, but continuation of this research depends on receiving additional funding. “If we don’t get [funding], we can’t do pre-clinical trials,” she says. Patient advocates from Nuerofibromatosis Michigan hope to take Barald’s story with them to Capitol Hill. They hope these combined efforts will give representatives a real world context of how increasing research funding could one day save lives.
In addition to worrying about the future of her own research, Barald is concerned how the decline in federal funding is impacting the future of science. “I’m very worried about the loss of two generations of scientists. I think that we’re in real danger,” she says. Barald worries that the decreasing funding makes it harder for graduate students and new faculty to establish successful research careers.
Members of younger generations of scientists have begun to take action. The Student Advocates for Graduate Education (SAGE) is a growing coalition of graduate students from public research universities scattered throughout the United States. They take annual trips to Washington D.C. to advocate for issues that impact graduate students, like the changing funding climate. Michael Benson is an engineering graduate student that has served on the group’s executive board for four years. He suggests that involvement doesn’t have to be limited to patients and scientists. “Get involved. Don’t sit on the sidelines… Get in contact with your members of congress, with your senators” he says. “Let them know that this matters to you. It matters to your future and your kids’ futures.”