In 1985, patients in wheelchairs and significant joint deformities were still a common sight in waiting rooms in rheumatology practices. The era of early aggressive therapy was only beginning and patients newly diagnosed with rheumatoid arthritis (RA) might have been hospitalized for a week and treated with gold shots. Many patients faced a poor prognosis, with a life of significant pain and disability and possible joint replacement surgery. At the same time, within the ACR—known then as the American Rheumatism Association and newly separated from the Arthritis Foundation—the cornerstones were set for the ACR Research and Education Foundation (REF).
Twenty-five years later, wheelchairs are largely absent from waiting rooms. A patient newly diagnosed with RA is treated as an outpatient and has a good probability of remission with today’s disease-modifying therapies. And the REF is the second-largest funding source of rheumatic disease research, after the National Institutes of Health (NIH). In 2009 alone, the REF awarded $5 million in career development grants. As of 2010, $24 million has been awarded to fund 54 RA projects through the Within Our Reach: Finding a Cure for Rheumatoid Arthritis campaign. As the REF celebrates its silver anniversary, several ACR members who have had important roles in the REF spoke with The Rheumatologist about the foundation’s birth and growth into a major funder of rheumatology research and education.
Foundation’s First Steps
“The priority was to re-emphasize and re-establish identity of the field of rheumatology in the United States, and the REF was part of that,“ says William N. Kelley, MD, professor of medicine at the University of Pennsylvania in Philadelphia and secretary and, later, president of the ACR when the REF was being formed. “There was a general level of discontent with the funding situation in rheumatology at the time, particularly how much went to administrative costs.” In 1985, the REF was established as an ACR-affiliated nonprofit organization that would be able to accept charitable donations.
In its early years, the REF’s modest grant and award portfolio focused on funding research and training rheumatologists. In 1993, its three main activities were the Medical Student Summer Research Award, the ACR Arthritis Investigator Award, and the Physician Scientist Development Award. Current REF treasurer, Audrey Uknis, MD, associate dean of admissions and professor of medicine at Temple University School of Medicine in Philadelphia, received the Physician Scientist Development Award in the early nineties (see “REF Education Investment Yields Positive Results,” p. 38). “The REF award gave me a sense early in my career that there was an organization with a purpose that was critical for career development in burgeoning young rheumatologists,” says Dr. Uknis. During the 1990s, as interest in subspecialty training, including rheumatology, dropped among medical students, the REF worked to attract students, residents, and fellows to the subspecialty. In 1997, the REF began supporting fellowship training.
The REF Industry Roundtable, created in 2000, was a key step to the current success of the REF. With the help of the Industry Roundtable, the REF’s core grant and awards portfolio grew from $500,000 in 2000 to $5 million in 2009.
Giant Leap: Within Our Reach
When the Within Our Reach campaign was launched in 2006 with an initial fundraising goal of $30 million, the REF leapt forward in terms of its ability to raise funds to support rheumatology. “With funding from National Institutes of Health being slashed for rheumatic diseases …, the ACR saw the need to become more effective at fundraising,” says James O’Dell, MD, Larson professor of internal medicine at the University of Nebraska Medical Center in Omaha and REF president when Within Our Reach started.
The ACR’s research committee was charged with identifying the best models for fundraising and concluded that disease-targeted initiatives are the most effective. “RA is core to the practice of rheumatology, was poorly funded at the time, and was ripe for discovery,” says Dr. O’Dell. It was chosen as the focus of Within Our Reach. An international group of RA experts met in Boston to set the research agenda for the Within Our Reach. They concluded that a combination of translation and clinical research followed by clinical and collaborative trials is necessary to advance the care of patients with RA.
To date, Within Our Reach has raised nearly $28 million for RA research. Its fourth round of awards—totaling $6 million in translation and clinical research grants—was just completed. “One of the greatest campaign successes is reinvigorating rheumatoid arthritis research in the United States,” says Dr. O’Dell. “With these opportunities, we have been able to recruit some talented investigators.”
Another benefit has been synergy in RA research. Within Our Reach–funded investigators meet annually to discuss their research, and extensive collaborations have been formed as a result, notes Dr. O’Dell. (See “An Eye on RA Innovations,” p. 1.) With 100 presentations at the 2009 ACR Annual Scientific Meeting and 65 publications to date based on research funded by the campaign, “the productivity has been outstanding, “ says William St.Clair, MD, current REF president and professor of medicine at Duke University School of Medicine in Durham, N.C. “It will only continue to nurture the research environment in RA and spill over into other areas.”
Look to the Future
Building on these accomplishments, the REF is constantly looking for ways to improve its funding efforts and open pathways for collaboration. One recent effort to ensure the future of rheumatology was the Blue Ribbon Panel. Led by REF Vice President David I. Daikh, MD, the panel reviewed and reorganized the REF funding portfolio in 2008–2009. The result is a streamlined portfolio of core awards that focuses on the career development path. The programs target medical students, fellows, young faculty members, and rheumatology training programs. Larger grant offerings for fellows and young faculty are now available, including the Rheumatology Scientist Development and Rheumatology Investigator awards.
Another key collaborative development is that, for the first time, the REF and the ACR conducted their strategic planning in parallel when developing the 2010–2012 strategic plan. “This gave us the opportunity to coordinate our goals and objectives for the next several years,” says Dr. St.Clair.
Incorporating sustainability into its funding programs is one of the REF’s goals, so that the foundation can continue its successful track record of supporting rheumatology research and training, through its core portfolio, and disease-specific research, through programs like Within Our Reach. “We will continue to be a major factor in building careers of young rheumatologists for the foreseeable future,” says Dr. St.Clair. Developing alliances with other organizations is one way of ensuring sustainability. To that end, the REF is collaborating with NIH and the Arthritis Foundation to identify investigators who have submitted high-quality, mentored-training grant applications that didn’t get funded. For investigators who received excellent scores but just missed the funding line at the NIH, the REF has an award to pay their salary for a year. This award allows these talented individuals to go back and reapply to the NIH, says Dr. St.Clair. “In fact, our first six awardees have been successful in obtaining NIH funding, so the program is a great investment.”
Now almost at its $30-million fundraising goal for Within Our Reach, the REF is looking ahead. “We have been very pleased with the success of the Within Our Reach program. We envision this will go forward in some way and RA will be a continued focus of this program,” says Dr. St. Clair. Meanwhile, the REF is planning another disease-targeted research program. Currently, the foundation is gathering feedback from ACR members, REF board members, industry supporters, and lay donors about what the next campaign should focus on, notes Dr. St.Clair.
Sustainability in fundraising sources is another goal from the REF 2010–2012 strategic plan. Within Our Reach’s success expanded the REF’s reach to lay people, patients, and families affected by rheumatic diseases. “We’re trying to expand our visibility to the public,” says Dr. St.Clair. The REF development advisory council will soon include lay donors, and Dr. St.Clair predicts that lay donors will eventually be part of the REF board of directors. “When we go out to the lay public, we get a very warm reception, being rated as a four-star charity [by Charity Navigator, an independent evaluator of charities].” At the REF, ninety cents of every dollar donated goes to educational or research grants and awards.
When asked what has been the greatest success of the REF’s first 25 years, each of these leaders had a different view. Dr. Kelley notes that the “current focus on finding the cure for RA is a good direction to take.” Dr. O’Dell says that the rheumatology community staying united in terms of helping to secure the future of rheumatology was key. And, as Dr. St.Clair points out, “The REF has created a nice interface between private practice and academics with programs like the ambassadors and diplomats [a REF volunteer program]. Younger clinicians are coming into rheumatology because it’s exciting, with the new drugs as well as the emerging science.”
Heather Haley is a freelance medical writer based in Cincinnati.
REF Education Investment Yields Positive Results
While other medical specialties report declines in applicants to training programs, the number of rheumatology fellows completing training is 76% higher than it was a decade ago. Today, the REF funds four preceptorships and seven education and training awards, including a fellowship for pediatric rheumatology.
Audrey Uknis, MD, associate dean of admissions and professor of medicine at Temple University School of Medicine in Philadelphia, received an early Physician Scientist Development award (now called the Rheumatology Scientist Development Award). “The REF award had an immeasurable impact on my career,” she says. “I was able to transition from my fellowship into a junior faculty position.” Without the award, no funded faculty position would have existed for Dr. Uknis.
A secondary benefit of the award was that it inspired Dr. Uknis to volunteer with the ACR and REF. After she received the award, Dr. Uknis was invited to participate in the strategic planning process in 1994. “From that activity, I gained the sense that this is an organization that I would enjoy working with throughout my career,” says Dr. Uknis. She is currently treasurer of the ACR and the REF.
REF training programs targeting both medical students and graduate students draw talented trainees from many disciplines. Kaleb Michaud, PhD, received an REF preceptorship while completing his physics doctorate at Stanford University in Stanford, Calif. Now an assistant professor of internal medicine at the University of Nebraska Medical Center in Omaha, Dr. Michaud is a co-investigator for the National Data Bank for Rheumatic Diseases (NDB) and studies long-term patient outcomes.
Dr. Michaud’s interest in rheumatology started through a personal connection with Fred Wolfe, MD, founder of the NDB. Precepted by Eliza Chakravarty, MD, assistant professor in rheumatology at Stanford University, Dr. Michaud studied the impact of total joint replacement on outcomes in RA patients. “The REF preceptorship provided money and incentive to work closely with a rheumatologist and side by side with MD/PhDs doing outcomes work, which was critical, since my advisors were in the school of humanities and sciences,” says Dr. Michaud. “After the preceptorship ended, I remained active in the rheumatology division, participating in journal clubs and seminars.”
Today, Dr. Michaud has even greater appreciation for the REF’s efforts to fund training opportunities. “As a graduate student, I assumed these training opportunities were everywhere. Now, I see the lack of funding support for graduate students, residents, or fellows to pay for research in rheumatology. Having this funding available for training is a brilliant benefit.”
