LRI 2014 Lupus Advocacy Day Emphasizes Patients’ Need for Research Dollars

LRI National Coalition

Before heading off to the Hill to ask Congress to allocate budget to support lupus research, our advocates armed themselves with the facts. What has been achieved in lupus research, where it’s going, how patients can get involved, and why keeping up the momentum is so important.

We wanted to share a summary of what we learned so you too can understand what we are fighting for and why we so desperately need Congressional support.

Study on Repurposing Existing Drugs for Lupus

Amrie GrammerDr. Amrie Grammer shared the status of the current LRxL STAT project – a collaborative initiative between the LRI and the Alliance for Lupus Research (ALR).   “People may call it repurposing, retooling, retasking, but the idea is to explore whether a drug approved by FDA for another disease might be used for lupus.” Of the 157 identified as potential candidates, experts meeting April 3 will narrow down to approximately 30 drugs with the greatest potential in lupus. “Our objective is to bring new drugs and therapies to lupus patients – STAT.”

AMPing Up Drug Development

Steve HoffmanSteve Hoffman, MS of the Foundation for the National Institutes of Health reported the exciting progress of the recently launched Accelerating Medicines Partnership (AMP). The new collaboration will harness the collective knowledge and resources among the NIH, biopharmaceutical companies, nonprofit organizations and academic communities to better understand the disease and uncover new targets for drug development. The LRI and our partner the Alliance for Lupus Research will have a vote in strategic planning.

Patients at the Heart of Research

Cecilia ArradazaCecilia Arradaza of talked about how FasterCures is speeding up and improving medical research with a focus on patient-driven drug development.  Pointing to success stories by advocacy groups in other diseases, Cecilia called for the lupus community’s help. “Mighty ideas can come from small places.”

Suzanne SchrandtSuzanne Schrandt of Patient-Centered Outcomes Research Institute (PCORI)  also emphasized the many ways that patients are being brought into the research process.  Every stage in the cycle from deciding which projects have the potential for the greatest patient impact through designing a study and how results should be evaluated.

Our advocacy experts, Kathryn G. Schubert, Vice President and Brent Jacquet, Senior Vice President at Cavarocchi-Ruscio-Dennis Associates, L.L.C.  prepared our Coalition members for their visits with Congress. 

Katie SchubertKatie reviewed the Affordable Care Act (ACA) and pointed out potential needs for future advocacy to ensure that plans allow patients to get adequate care. For instance, while all plans must cover prescription drugs, access to newer and more expensive Specialty Tier drugs is under discussion through the Patients’ Access to Treatment Act (PATA). 

Brent JacquetBrent gave an inspiring talk on why funding research at the National Institutes of Health (NIH) is so critical. He cited a startling statistic that underscores why we are requesting a 7% raise in appropriations to the NIH. The buying power of NIH has declined 22 percent over the past decade.  The number of investigator-initiated grants declined  34 percent since  2003.  As a result, young research talent faces a discouraging career environment for their science. Quoting a New York Times opinion article on the problem, Peggy stressed that when we stop investing in scientific innovation, “That’s how a great country becomes un-great.”

Fired up by the facts, our advocates had more than 50 meetings with members of Congress and their staff, emphasizing our three key issues:

Support HR 460: The Patients' Access to Treatments Act (PATA)

  • Patients must have access to the newest biologic drugs they desperately need and deserve. This bill would protect patients from having to pay a percentage of their prescription drugs – an out-of-pocket cost that could run thousands each month.

Support Funding to Strengthen Biomedical Research at the National Institutes of Health

  • We are asking to restore NIH funding levels by 7% – a highly reasonable request given the 34% decrease NIH has suffered in funding for grants that could improve treatment for lupus and other life-threatening diseases.

Continue Inclusion of Lupus Research in the FY 2015 Defense Appropriations Peer-Reviewed Medical Research Program

  • We need lupus to remain on the list of just 25 diseases eligible for research funded by the Defense budget. Lupus particularly targets a growing population in the armed forces - women of color.  

Please use our automated tool to identify and either email or phone your federal representatives. Templates are provided to help you explain the importance of funding lupus research and supporting the bill to improve patient access to the latest medicines.

It only takes a minute to take action that can save lives for years to come!