LFA President Presents at The 12th Annual BIO CEO and Investor ConferenceFebruary 11, 2010
During the 12th Annual BIO CEO and Investor Conference held on Tuesday, February 9, 2010 in New York City, Sandra C. Raymond, President and CEO of the Lupus Foundation of America (LFA), participated in a panel discussion on the future of potential new treatments for lupus. The conference was hosted by BIO, the international umbrella organization for international biotechnology companies.
The session, entitled Lupus: New Care for Too Much Flare, focused on the development pipeline for lupus therapies and future use of these medications by individuals with lupus. The panel moderator was Mark Schoenebaum, M.D., Managing Director and Senior Biotechnology Analyst, Deutsche Bank who was joined by Raymond and other panelists, Richard Furie, M.D., Chief of the Division of Rheumatology & Allergy-Clinical Immunology, North Shore-Long Island Jewish Health System; Barry A. Labinger, Executive Vice President and Chief Commercial Officer, Human Genome Sciences; and Theresa Podrebarac, M.D., Senior Medical Director Rheumatology, EMD Serono, Inc.
It has been more than 50 years since the U.S. Food and Drug Administration (FDA) approved a drug for the treatment of lupus. There are encouraging signs that this treatment drought could be coming to an end with one investigational drug possibly receiving FDA approval later this year, and a handful of others demonstrating positive results.
Dr. Furie characterized the mild, moderate, and severe course of the disease and discussed the side effects of current therapies. There was also a discussion of the prevalence of lupus, quality of life issues, and payer policies. With respect to the prevalence of lupus, Ms. Raymond reported on the status of the Centers for Disease Control and Prevention’s (CDC) ongoing study to determine the prevalence and incidence of lupus in the U.S.
In her remarks, Ms. Raymond stated that "issues of importance to people with lupus will be the effectiveness of a new medication in reducing disease activity, improvement in the quality of their lives, and access to the new medications." She said, "The impact on a patient’s quality of life must be taken into consideration when developing new therapies for lupus." According to quality of life surveys conducted by the LFA, people with lupus have unpredictable flares (increase in disease activity) which affect their ability to work, attend various family and social outings, events, care for their children, and more.
Ms. Raymond pointed out that people with lupus must have the ability to access new treatments. A majority of the treatments in development for lupus are biologic therapies, which historically for other diseases, such as MS, are placed by insurers on high specialty tiers resulting in high co-pays and out-of-pocket expenses for patients. She said the practice of placing these therapies on the highest tiers is discriminatory and must be addressed. She also said that pharmaceutical companies must offer robust compassionate care programs, which provide financial assistance to people who cannot afford medications, and action needs to be taken by Congress and other federal agencies to cap out-of-pocket expenses and co-pays.
For the last two years the LFA has been proactively leading a coalition of 45 chronic disease organizations to address high out-of-pocket drug costs. Through the efforts of the coalition, Senator John D. Rockefeller (D-WV) and Representative Hank Johnson, (D-GA, 4th) successfully introduced legislation last year that would cap the amount a person could be charged for any one prescription, and also cap the total amount an individual could be charged for all medications during any given month.
The LFA will continue to advocate on behalf of people with lupus to ensure that private insurers, government, and industry take the necessary steps so all people with lupus have access to the first new treatments for the disease in five decades.