Our research, education and advocacy programs in 2013 contributed advances that are helping to solve the cruel mystery of lupus.
CEO Insights and Foresight
By Sandra C. Raymond, Lupus Foundation of America President and CEO
As 2013 comes to an end, I think about the statements key members of the lupus community have made about the strategic leadership and vision of the Lupus Foundation of America (LFA) and the advances we have made over the years.
Almost every day, people with lupus and their families, key lupus research leaders, representatives of industry, Congressional champions and federal agency staff thank and commend us for tackling the tough research issues. They encourage us to continue our work to advance the discovery of new treatments and expand public awareness. They value and understand that while we must expand medical research on lupus, providing essential services, support and care to those who are coping with the disease now is essential! And they recognize the unparalleled leadership of our affiliated chapter network across the United States and our partners worldwide. Today, we eagerly look forward to continuing our work with the entire lupus community to strengthen and advance the field.
The Lupus Landscape
The lupus research landscape has many challenges but today we have more data with which to meet those obstacles. One barrier that continues to confound the effort to find new, safe, effective and tolerable treatments for lupus is discovering better ways to design clinical trials. In an effort to tackle this problem, we initiated a project to pool clinical trial data (de-identified) from six major pharmaceutical companies. Our biostatisticians are performing multiple analyses which may offer clues on ways to better design clinical trials. Findings have already been presented at major scientific meetings of medical organizations and federal agencies.
The Lupus Foundation of America has launched many firsts in lupus, such as stimulating Congressional support for the largest lupus prevalence study ever conducted and opening up the Department of Defense’s medical research program to include lupus - a combined total of $40 million in new funds for lupus research. We have also created an online portal that trains health professionals on instruments used in clinical studies. The National Institutes of Health is now using the portal joining more than 3,500 clinical trial doctors from 53 countries, further demonstrating the tool’s value to improve outcomes in clinical trials.
As the public champion and authoritative source for information on lupus, we established the first and only national magazine for people with lupus and last month announced the launch of a new open access, peer-reviewed medical journal. We’ve moved the needle in lupus awareness through programs to engage lupus groups around the world in campaigns, partnered with federal agencies to secure and execute the first Ad Council campaign for lupus, and we work with celebrities to bring greater attention to the cause.
We believe there is great potential to find the causes and cures for lupus in the future. While the largest funders of medical research on lupus are the federal government and industry, we are particularly grateful and encouraged that more than two dozen pharmaceutical and biotechnology companies are now investing in the search for new lupus treatments. Congress (especially the Congressional Lupus Caucus we worked to establish in the House of Representatives) and federal agencies have begun to do more to support medical research for this underserved significant public health issue. We are also pleased the lupus community is working together more for efficient tackling of the looming obstacles. Greater collaboration — with outright consolidation of the numerous free-standing, local and some of the national lupus organizations — is needed to maximize comprehensive efforts to bring the disease under control and find cures.
Envisioning the Future, Key Priorities
Now more than ever, the lupus community must come together. We must devote our energies to accelerating the pace of research, but we must do it without sacrificing the many urgently needed services for people with lupus and programs that increase awareness of the impact of lupus. That is the dual strategic focus of the Lupus Foundation of America.
We have many priorities and in future blogs I want to discuss these with you. But right now, let me give you a few key priorities that can move the field forward. First, we must better define the spectrum of lupus to ensure it can be diagnosed accurately and treated appropriately. Second, we must encourage our key opinion leaders to come together to develop clinical and regulatory policy recommendations that have the potential to greatly advance the field and to support a major increase of federal funds for lupus research. And last in this discussion, regulatory agencies must adopt policies which recognize the uniqueness of lupus and be willing to accept adaptive, smaller trials for approval in an effort to de-risk the search for new, safe and effective lupus treatments.
To solve the cruel mystery of lupus, there are many other pillars that must be built to strengthen the field. Collaboration, dialogue, passion and hard work has begun but must be accelerated if we are to achieve our goals.
Congress passed the Consolidated Appropriations Act of 2014. While this funding brings some good news in the fight against lupus, the Act only restores some of the money to the NIH that was previously cut through the automatic spending reductions (sequestration).