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Act Now New York: Make the Parkinson's Community Heard!

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:

Dear Fellow Advocate:

As New York's State Director for the Parkinson's Action Network (PAN), I am contacting you today to follow up on an important issue.    

The Patient Protection and Affordable Care Act (ACA) requires health plans for individuals who are uninsured or who will be insured through an individual or small group policy to offer, beginning in 2014, a comprehensive package of Essential Health Benefits (EHB).  The U.S. Department of Health and Human Services (HHS) has directed each state to select, by this fall, a minimum "benchmark" plan that will serve as the standard for EHB coverage within the state.  This means state leaders are holding key discussions that will have an impact on people living with Parkinson's. More information.

I am concerned about the proposed EHB guidelines in regards to its significance to the Parkinson's community.  We must act to ensure that all New Yorkers and their families living with Parkinson's disease have access to necessary prescription drugs and quality care at an affordable price.

I have written Governor Cuomo
and asked him to address our concerns by ensuring that New York's benchmark plan covers the necessary flexibility to ensure:

  • access to necessary medications, including protected classes; and
  • a cost-sharing framework that ensures affordable care and medication.

PAN will continue to monitor the issue and recently spearheaded a letter, signed by more than 100 organizations, to HHS Secretary Sebelius expressing our concerns.  However, we must let our voices be heard here in New York State, to ensure the Parkinson's community is not ignored.  I have TAKEN ACTION and if you have not done so already, I ask that you write Governor Cuomo and our state leaders
expressing our concerns about the Essential Health Benefits coverage for people with Parkinson's.

Here's what you can do to help out:

  1. Download PAN's Guide to Contacting State Leaders Regarding Essential Health Benefits from PAN's website.  This guide includes a template letter to send to state leaders.  The letter outlines some chief concerns of the Parkinson's community regarding this issue.

  2. Copy, paste, customize, and send the template letter (suggested areas for customization are in ALL CAPS).

  3. Address your letter to the Governor Cuomo and send copies to the leaders listed under your state in the PAN guide.

  4. Once you've submitted your letters, please let me know by emailing me at pan_nys@yahoo.com.   

Thank you,
Jill Ritter
PAN New York State Director

Take Action!


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: Apr 27 2012