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State Leaders Need to Hear from You!

The Parkinson's Disease Foundation (PDF) has received another important update from the Parkinson’s Action Network (PAN) about The Patient Protection and Affordable Care Act (ACA).

From PAN:

Background: Essential Health Benefits

The Patient Protection and Affordable Care Act (ACA) requires, beginning in 2014, health plans for individuals who are currently uninsured or who will be insured through an individual or small group policy to offer a core, comprehensive package of Essential Health Benefits (EHB).  More information.

In December 2011, the Department of Health and Human Services (HHS), charged with oversight of the law’s implementation, released a guidance document, which tasks states with selecting, later this year, a “benchmark” plan that will serve as the state’s baseline for what plans subject to the ACA’s EHB requirement must cover.  This means that rather than having one federal standard for the currently uninsured and those in small group policies, each state will be making its own choices about plans.

PAN is extremely concerned about the potential implications of several specific issues discussed in the bulletin and a few that were left unaddressed.  State leaders will play a role in influencing key decisions being made around this issue in the next few months.  We are asking you to contact your state leaders today and ask them to act to protect the interests of people living with Parkinson’s.

Our chief concerns, summarized in greater detail in our one-page summary on this issue, center on two key issues:

Access to Prescription Drugs:

  • HHS proposes requiring plans subject to the EHB requirement to cover only one drug per therapeutic class.  This standard is far lower than existing federal policy and lower than what is needed to ensure that people with Parkinson’s and other diseases have access to necessary medications.
  • In addition, existing federal policy includes six protected classes of drugs, including anti-depressants.  We believe HHS should require plans subject to the EHB requirement to include a protected-class policy for drugs that are more universally needed for serious conditions like Parkinson’s.

Cost Sharing:

  • To date, HHS has failed to provide clear guidance around the issue of cost sharing.  Timely guidance is imperative to ensure people with Parkinson’s can make informed coverage decisions based on premiums, co-pays, and similar costs.
  • Moreover, HHS has indicated it may allow plans subject to the EHB requirement to impose service limits on needed services such as physical and speech therapy.

Next Steps: State Action

HHS has directed each state to select, by this fall, a minimum “benchmark” plan that will serve as the standard for essential health benefits coverage within the state.  This means state leaders are holding key discussions that will have an impact on people living with Parkinson’s.

We need you to contact your state leaders today and urge them to ensure the concerns of the Parkinson’s community are addressed, specifically:  the need for a standard that provides plans with the necessary flexibility to ensure patients have adequate access to necessary medication, as well as a cost-sharing framework that ensures medications are affordable.

Please contact your state leadership today by personalizing and sending the template letter we have provided below.

Take Action:

  • Download PAN’s Guide to Contacting State Leaders Regarding Essential Health Benefits from PAN's website.  This Guide includes a template letter, describing chief concerns of the Parkinson’s community on this issue, to send to state leaders, as well as a state-by-state directory of leaders’ contact information.
  • Copy, cut, paste and customize the template letter (areas we recommend you personalize are denoted in ALL CAPS).
  • Address the letter to your state’s Governor and copy (or cc:) the additional leaders listed under your state in the PAN guide.
  • Once you’ve sent your letters, let PAN know by emailing

PAN is the voice of the Parkinson's community in Washington, DC.  In fiscal year 2012, PDF is supporting PAN with a grant of $200,000.

Source Date: Mar 19 2012