By: Wendy Selig, MRA’s President & CEO
A diagnosis of metastatic melanoma launches individuals and their families into an intense maze of frightening statistics, clinical trials and uncertain prognosis. Here at the Melanoma Research Alliance (MRA), we are focused on the mission of accelerating the research to bring better options to these patients.
Metastatic melanoma is a deadly disease that generally arises on the skin. Its incidence is on the rise, tripling in the last three decades. For too long, this vicious disease has evaded effective therapies; one person dies in the U.S. of melanoma every hour.
The good news is that there is finally real progress in the research, with melanoma now leading the oncology field in potential and novel therapies. In the last three years, four new drugs have been approved by the Food and Drug Administration (FDA), and several promising new approaches are in late-stage clinical development. The field of melanoma treatment is changing rapidly, as the “next set of options” has never looked more hopeful.
Yes there is more hope than ever before that we are nearing the day when no one will suffer or die from melanoma. But we are certainly not there yet. Today’s patients must navigate a complex and intense juggernaut of therapies, uncertain about whether their specific tumors will respond to the newest tools in their oncologists’ arsenal and how long those responses might last.
Only continued medical research can combat the uncertainty that still surrounds melanoma and many other types of cancer; research to help speed current treatments through the clinical trials pipeline and into the hands of patients, research into biomarkers to help better predict which patients will respond well to a particular treatment and what can be done about resistance to therapy once it sets in, and research into entirely new modes of treatment so that patients will not run out of options before they run out of time.
We must have sustained investment of resources and a commitment of focus from the best and brightest minds to ensure that we can expedite more concepts through the clinical development system and through the regulatory process so patients can benefit from the progress.
The government shutdown and budget upheaval at the National Institutes of Health (NIH) and the FDA illustrates the fragility of our current research ecosystem. The distressing turbulence in Washington has taken a real toll on the melanoma research and clinical care community just at the moment when there are so many remarkable new paths of discovery to pursue. The role of all stakeholders in this community has never been more vital to the mission of sustaining and accelerating progress for patients.
The MRA engages all of the stakeholders – from individual patients, clinicians and research institutions, to large pharmaceutical companies and small biotech firms, to other like-minded nonprofits, government officials and our corporate allies as we work to deliver better outcomes for patients with melanoma and all who are at risk. Since 2007, the MRA has provided more than $49 million to researchers working to better prevent, diagnose, and treat melanoma. These funds have made a real impact in advancing some of today’s most exciting new treatment approaches – including targeted and immune-based therapies. But even with this level of funding from MRA, the melanoma research ecosystem depends on a vibrant federal commitment, through the NIH and the FDA.
The effects of continued budget disagreements have held medical research funding hostage. NIH Director Dr. Francis Collins calculates that the 5.5% NIH budget reduction mandated by sequestration coupled with a decade of flat budgets and rising inflation has cut the agency’s purchasing power by 25%. Due to the Sequester, NIH is funding 650 fewer research grants this year than it did in 2012. This reduction is having a tangible impact at research universities across the country. Faced with this trickle of research funding, promising young scientists are packing up their labs and heading to big corporations instead of pursuing careers in academic research. The Sequester’s full impact on the medical research pipeline could take years to measure.
The recent government shutdown made matters even worse as NIH furloughed 73% of its staff and halted new clinical trial enrollments, keeping even gravely ill patients waiting for access to cutting-edge experimental therapies. A metastatic melanoma patient from Michigan was told that the potentially lifesaving treatment he’d been expecting to receive at the National Cancer Institute (NCI) was not available to new patients during the government shutdown. While his community rallied around him and managed to get him enrolled, others seeking treatments were forced to wait 16 agonizing days for the government and NIH’s intramural clinical trials to reopen. That is an unacceptable delay, especially in a disease like metastatic melanoma, which is characterized by rapid progression through a patient’s body.
Patient organizations recognize that the responsibility for funding translational research to bring new treatments to patients does not fall solely on the NIH, where it has been subject to political disagreements and Congressional impasses. Other funders of scientific research, like pharmaceutical companies, academic institutions and patient-led groups like MRA, are working together to build impactful research programs. For example, MRA has engaged in eight Industry-Academic Partnerships, research awards that are supported by matching funds from our organization and biomedical industry companies. These collaborations have allowed researchers to test promising devices and treatments for application in the fight against melanoma, leveraging MRA’s resources against those of an industry partner to support the high-impact proposal of an academic researcher or team of researchers.
For organizations like MRA, it all comes back to the people we serve – the patients, their families, and everyone at risk. All of these people depend on the medical research ecosystem to address the challenges they currently face, to change treatment paradigms and transform lives. As we sit on the cusp of tremendous progress in melanoma and so many disease areas, we must not accept delay and gridlock that threatens people’s lives.