Advocacy Blog
ORPHAN Cures Act a “welcome and bipartisan fix” to the IRA’s negative impact on drug development
September 18, 2023 | BIO Representatives John Joyce, M.D. (R-PA) and Wiley Nickel (D-NC) today introduced the Optimizing Research Progress Hope And New Cures (ORPHAN Cures Act). BIO President and CEO, Rachel King, made the following remarks: “This legislation is a welcome and bipartisan fix to the Inflation Reduction Act’s (IRA) negative impact on the…
Read MoreNew CMS guidance a “missed opportunity” for future medical innovation, patients
June 30, 2023 | Source BIO.org The Centers for Medicare & Medicaid Services (CMS) today released its guidance for the Drug Price Negotiation Program (Negotiation Program) under the Inflation Reduction Act of 2022 (IRA). John Murphy, BIO’s Chief Policy Officer, made the following statement: “As we have stated in the past, the Medicare price setting…
Read MoreVital Transformations Study Regarding White House Drug Pricing and SMART Act Released
The Vital Transformations study was released this week, and it estimates that there would be more than 235 fewer FDA approvals of new medicines for patients battling cancer, neurological, and rare and infectious diseases over the next decade as well as 15,714 lost jobs for Georgia workers if proposals to expand federal government-mandated drug pricing policies are…
Read MoreA Patients Perspective of Clinical Trial Benefits
Dorothy Leone-Glasser, RN, HHC, CEO Advocates for Responsible Care, Chair Ga Bio Patient Advocacy Alliance Clinical trials are essential for the development of new treatments for chronic illness patients. Every new medicine and treatment started with volunteers participating in clinical trials. Our current high standards of medical care and newly discovered therapies have improved the…
Read MoreThe Value of Support Groups
Dorothy Leone-Glasser, RN, HHC, CEO Advocates for Responsible Care, Chair Georgia Bio Patient Advocacy Alliance When I was diagnosed with systemic lupus erythematosus at 19 years, I discovered a major void in the treatment of chronic illness –support counseling to help patients understand and cope with the challenges of their disease. To bridge this gap…
Read MoreMichelle Kimberly Clark’s Story
Michelle Kimberly Clark Breast Cancer Survivor, Clinical Trials Patient Participant In May of 2013, while exercising Michelle felt a small mass on her left breast. In 2015, she met Andre (her husband), starting her life as a young, vibrant, African American woman. They moved to Atlanta and as Michelle states, she was “on her way to…
Read MoreKelly Barta’s Story
Kelly BartaCoalition of Skin Diseases, President After experiencing a prolonged and severe health crisis due to long-term use of topical steroids for eczema, Kelly became a passionate voice for those who were suffering. She was determined to bring change to the way eczema was understood and treated. Her advocacy efforts have led her to serve…
Read MoreChristopher Reed’s Story
J. Christopher Reed Lupus Foundation of America-Georgia Support Group Facilitator, Advocacy Chair Christopher was diagnosed with lupus in 1990 at the age of 16. Lupus attacked his heart, lungs, kidneys, digestive system, veins, and nervous system. Christopher’s lupus journey began with chronic headaches and frequent muscle spasms then progressed to frequent fevers, arthritis, and tremendous…
Read MoreBarbara Fleeman’s Story
Barbara Fleeman WomenHeart Champion; Support Group Facilitator Barbara grew up in Atlanta and moved back 6 years ago after spending 40 years building a successful career in entertainment consumer marketing/promotion. She was always very active in her personal and professional life. In 2013 she was diagnosed with severe pericarditis. Over the following 18 months. She…
Read MoreBioMarin Pharmaceutical commemorates 5 years of helping children with fatal rare disease
CLN2 Batten disease is a rare, inherited, fatal disorder that primarily affects the nervous system as a result of a failure to produce enough of the enzyme TPP1. The signs and symptoms of this condition typically start between the ages of 2 and 4, featuring recurrent seizures and coordination difficulty. BioMarin Pharmaceutical in San Rafael…
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