As revenue sources for research dwindle, academic medical centers are under great stress today. There is a drop in patient care fees, Medicare and Medicaid reimbursement, money through philanthropy, state support, and grant support. At every center, institutional support for research is under pressure. And for those just starting their careers – particularly those with an interest in lupus research – these problems could not come at a worse time.
Lupus offers many challenges to researchers: It is hard to diagnose, it ravages different parts of the body, its symptoms come and go and often imitate other illnesses, and it manifests differently in each individual. Despite these challenges, we have come a long way, and the lupus community of clinician-scientists has worked persistently to unravel the mystery of lupus. In recent years, lupus research has produced important clues about the origin and effects of the disease. For instance, we know more than ever before about how the immune system malfunctions to cause lupus. We are beginning to recognize which individuals are at higher risk for life-threatening complications. We have learned which therapies used in other diseases are effective for treating symptoms of lupus.
Dr. Gary S. Gilkeson
But just as we reached this pivotal time, we were hit by a downturn in the economy. Funding for key research was harder to come by as the federal government, who along with the pharmaceutical industry represents the largest funders of research, was making cutbacks to all of its programs. For lupus alone, federal funding was reported to be $134 million in 2009 but dropped to just $105 million in 2012. Included in the cuts are programs supporting the growth and development of the scientific community.
As a result of the lack of funding, several promising young lupus investigators have decided not to pursue academic careers but have moved to private practice or industry. Even a number of senior lupus investigators have left academics primarily to enter the biopharmaceutical industry. Other investigators at academic institutions are focusing more on clinical trials rather than independent research.
Nonprofit organizations like the Lupus Foundation of America are making an effort to compensate for some of the loss in funding by creating comprehensive award programs of their own through private funding. Recently, the foundation announced a new Career Development Award that will offer professional development support to early-career clinician-scientists – a step meant to help stem the hemorrhage of young lupus researchers. The foundation already offers awards meant to support lupus researchers at all other stages in their career. Such support has been crucial in retaining some researchers in the field.
But without public funding, retaining scientists in the numbers that lupus really needs will remain close to impossible because the truth is that one cannot make an academic research career on foundation money alone, especially given the stress that academic centers are undergoing. Support from the National Institutes of Health and the Department of Defense, among other federal agencies that have supported lupus research, is key.
The most disturbing impact of failing to keep up the momentum of lupus research could be on treatment development and patient care for the estimated 1.5 million Americans with the disease. While there has not been a significant impact on those so far, it is easy to see the problems we may face down the road. Research and discovery conducted at the academic level is vital to target development. If there are no academics to develop ideas, there will be no new lupus drugs in the pipeline.
Another way that the drop in lupus researchers could impact patients is that most academic centers now have lupologists, individuals who specialize in lupus. The number of lupologists continues to dwindle because of financial stress on academic centers, and not as many new lupologists are entering the field. This makes the Lupus Foundation of America’s Career Development Award important because it offers a start to retaining early-career lupus specialists.
Studies indicate that patients do better when they are cared for by lupologists, who see a large number of lupus patients, compared with rheumatologists who see a more limited number. That’s because as with anything else, you get better at doing something you do all the time. If you see a lot of people with lupus, you get better at treating it. With the loss of lupologists at academic research centers, this specialized expertise will no longer be available and patient care could suffer.
Dr. Gilkeson is chair of the Lupus Foundation of America’s Medical-Scientific Advisory Council and professor of medicine and associate dean of faculty affairs and faculty development at the Medical University of South Carolina, Charleston. He reported having no relevant financial disclosures.