The Reconciliation for Prescription Drug Pricing Legislation could make it even more expensive for pharmaceutical companies to develop therapies for rare diseases!
The reconciliation for prescription drug pricing legislation is putting cures at risk for patients and their families. The measure was proposed in an effort to lower out of pocket costs for millions of Americans at the pharmacy counter, but this bill is not going to do that. Instead, this legislation helps very few seniors (somewhere between 2-3% of seniors) with drug costs, and does nothing to fix the inherent transparency issues in the drug supply chain.
This bill would essentially give PBMโs (pharmaceutical benefit managers) like CVS and Walgreens the ability to price fix prescription drugs and impose a 95% tax fee to drug companies who do not comply. These rules could ultimately result in a retraction in research and development, and have serious repercussions for orphan drug development. Drug development is already a volatile industry, and the recession has already retracted investment in research and development. The passage of this bill could leave small population rare disease patients like ours even further behind.
Please consider asking your elected official to vote against this legislation by clicking the button below.
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Perry A. Zirkel has written more than 1,500 publications on variousย aspects of school law, with an emphasis on legal issues in special education.ย He writes a regular column for NAESPโsย Principalย magazine and NASPโsย Communiquรฉย newsletter, and he did so previously forย Phi Delta Kappanย andย Teaching Exceptional Children.
Jennifer Bolander has been serving as a Special Education Specialist for PWSA (USA) since October of 2015. She is a graduate of John Carroll University and lives in Ohio with her husband Brad and daughters Kate (17), and Sophia (13) who was born with PWS.
Dr. Amy McTighe is the PWS Program Manager and Inpatient Teacher at the Center for Prader-Willi Syndrome at the Childrenโs Institute of Pittsburgh. She graduated fromย Duquesne University receiving her Bachelorโs and Masterโs degree in Education with a focus on elementary education, special education, and language arts.
Evan has worked with the Prader-Willi Syndrome Association (USA) since 2007 primarily as a Crisis Intervention and Family Support Counselor. Evans works with parents and schools to foster strong collaborative relationships and appropriate educational environments for students with PWS.
Staci Zimmerman works for Prader-Willi Syndrome Association of Colorado as an Individualized Education Programย (IEP) consultant. Staci collaborates with the PWS multi-disciplinary clinic at the Childrenโs Hospital in Denverย supporting families and school districts around the United Statesย with their childโs Individual Educational Plan.
Founded in 2001, SDLC is a non-profit legal services organization dedicated to protecting and advancing the legal rights of people with disabilities throughout the South. It partners with the Southern Poverty Law Center, Protection and Advocacy (P&A) programs, Legal Services Corporations (LSC) and disability organizations on major, systemic disability rights issues involving the Individuals with Disabilities Education Act (IDEA), Americans with Disabilities Act (ADA), and the federal Medicaid Act. Recently in November 2014, Jim retired.