Terrie Cowley , like many advocates fighting for research funding, has a cause. But with cause comes sacrifice. Cowley, president and co-founder of the TMJ association, works 30 to 40 hours a week without pay to battle for her cause: temporomandibular joint and muscle disorders . The TMJ Association is a patient advocacy group, a lobbying voice to Congress for a medical condition that doesnâÄôt receive the widespread attention of afflictions such as diabetes and ParkinsonâÄôs disease. Researchers like University of Minnesota Dentistry professor Eric Schiffman âÄî whose recent grant proposal is related to TMJ âÄî have been forced to cater their interests to these lobbying groups in hopes of receiving grant funding. Since 2005, competition for industry specific studies has become so fierce that only 9.8 percent of grant proposals for NIH Roadmap grants were accepted in 2008. Industry specific studies, like the study of joint disorders, have become harder to push through the peer-review process. This leaves other studies âÄî many of which could yield widespread benefits âÄî unfunded. Prioritization Research scientists often have to follow agency priorities to get funding. Prioritization is one of the most important parts of National Institutes of Health (NIH), former NIH director Larry Tabak said. âÄúNo matter how much money you put in the system, itâÄôs finite,âÄù Tabak said. âÄúThe real job is to prioritize what gets paid first, second, third and what doesnâÄôt get paid.âÄù In 2005, NIH laid its priorities on the line with their Roadmap , a plan detailing a new funding strategy. The strategy takes money from agencies within NIH like the National Heart, Lung and Blood Institute (NHLBI) and the National Cancer Institute (NCI) and diverts the money into enormous collaborative grants called Clinical and Translational Science Awards. The University of Colorado Denver received $76.2 million in five-year funding in 2008. The University of Minnesota has applied for a $65 million CTSA award three times in the past, most recently in fall 2008. âÄúIn the [NHLBI] a lot of the cancers happen to be blood cancers,âÄù University of Minnesota Academic Health Center spokeswoman Mary Koppel said. Because CTSA awards are taking money from individual institutions, along with the shift toward funding young investigators, the grant process has become incredibly competitive for researchers âÄî especially those in specific research fields such as Schiffman with TMJ. Flooding the market Researchers, who traditionally spent more time drafting studies, are quickly flooding NIH with as many proposals as they can, a process that is overwhelming peer-reviewers, who ultimately decide which studies are funded. âÄúIt is a strategy that I didnâÄôt use to believe in, because I usually got funded,âÄù Schiffman said. âÄúBut it is a strategy I would say is necessary at this time.âÄù Once proposals are submitted to an agency, industry-specific peer reviewers examine and select studies based on NIHâÄôs priorities and the likelihood of the study producing constructive information. The grant system in the United States is the âÄúenvy of the world,âÄù Tabak said, and increased competition is leading to better research. âÄú[The U.S.] has a peer-review system that truly the rest of the world tries to emulate.âÄù However, because of application increases, the selection process is stifling experimental research, Mark Paller, vice dean of the UniversityâÄôs medical school , said. âÄú[NIH] is not being open ended and allowing people to really take chances,âÄù he said. Investigators are now trying to figure out new strategies to bypass the pile-up of grant proposals. The lobby HavenâÄôt heard of TMJ? Congress hadnâÄôt heard much either before Terrie Cowley began lobbying for funds and raising awareness of the jaw disorder in the 1980s. Congress allocates funds to NIH, and in some cases is directly responsible for the grants they are willing to fund. Lesser known diseases without patient advocates are at a significant disadvantage in producing funding, Cowley said. âÄúEveryone has figured out by now,âÄù Cowley said, âÄúthat only the squeaky wheels get the oil.âÄù Cowley started the TMJ Association with another patient in Milwaukee, Wisc. in 1986 after she found that scientists had not properly studied a surgical implant she received in her jaw, she said. âÄúThere were no animal studies, there were no clinical trials,âÄù Cowley said. âÄúHow could anybody ethically allow this to continue?âÄù Since then, she has met with legislators in Washington, D.C. ranging from Sen. Tom Harkin of Iowa to the late Sen. Edward Kennedy of Massachusetts in efforts to increase funding and recognition of the disease. Increasingly, NIH has been speaking with these groups to shape their priorities, Tabak said. âÄúWe need to understand intimately, from the perspective of patients,âÄù Tabak said, âÄúwhat itâÄôs like to suffer from chronic pain, survive cancer or deal with AlzheimerâÄôs.âÄù The TMJ association doesnâÄôt consider itself a lobby group because itâÄôs not influencing legislation, Cowley said. âÄúThe only time that we actually lobby is when we ask for report language to go into the appropriations bill for the NIH, CDC or the Agency for Healthcare Research and Quality,âÄù she said.