Lorri Carey’s life changed forever when she received the news that she was suffering from ALS. “When ALS hits a family, it hits hard and advocacy is the bottom of the to-do list,” she said. “Our family is grateful that my slow progression has allowed me to play a role” in public policy. Carey, a patient advocate with The ALS Association, was among the speakers at Research!America’s 27th Annual Meeting of Members held at the Willard Intercontinental Hotel in Washington, D.C., on March 16. She described her experiences living with ALS and progress in the treatment and research of ALS. “It’s encouraging to see advances to better the lives of patients that would lead to a cure,” she said.
The Annual Meeting also featured guest speakers Robert Califf, M.D., commissioner of the Food and Drug Administration (FDA) and Senator Amy Klobuchar (D-MN). Increasing federal funding for research, incorporating the patient voice in drug development and harnessing the power of precision medicine were among the topics discussed. Dr. Califf emphasized FDA’s mission in keeping Americans safe while promoting innovation. He also shared his priorities for the agency which include strengthening the workforce, increasing quality of evidence and addressing the opioid epidemic. “Great science is a product of the people, so here at FDA our number one priority is workforce…it needs to be embedded in the great traditions of the FDA,” he said.
Senator Klobuchar described the positive impact of medical research on the U.S. economy. “The life sciences industry contributes $69 billion to the economy annually and supports more than seven million jobs,” she noted. The $2 billion increase for the National Institutes of Health in FY16, she added, is a positive sign that Congress can work across the aisle in support of research.