Advocacy Priorities

What’s Important

While our elected officials debate, legally challenge, and attempt to redefine sections of the law, our advocacy efforts will continue to closely monitor those areas of the Affordable Care Act (ACA) that will affect us most and prove most beneficial to our patient population including their family, caregivers, and medical support teams.

If the Foundation finds that federal or state legislation being considered may result in hurtful consequences, we intend to take immediate action. No policy should ever hinder early diagnosis and treatment, access to care, change treatment location, restrict or deny coverage or impose unreasonable reimbursement coverage limits. Any such action will be cause for our Foundation to mount an aggressive, focused response. In many cases, you will be called upon to help as you have done in the past.

The specific areas that demand our greatest attention include both the public and private medical providers:

  • Medicare/Medicaid cuts to include physician reimbursement
  • Medicare drug coverage policies
  • Formulary restrictions that limit product choice
  • Health plans that attempt to implement “fail first” therapeutic protocols
  • Standards of care/site of service
  • Limited access to preferred providers and preferred treatments
  • Burdensome cost sharing requirements/unreasonable co-pays or co-insurance
  • Unreasonable/predjudicial drug tier pricing
  • Unreasonable/unfair rehabilitation coverages
  • Increased research and development by government and the private sector
  • Affordable state insurance health exchanges
  • Foundation’s Patient Bill of Rights
  • Increased awareness of rare diseases and their severe coverage issues