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Parkinson's Disease: Principles for Health Care Reform

Over the past month, the Parkinson’s Disease Foundation (PDF) has received numerous expressions of concern and confusion from our community about the meaning of various legislative proposals for health care reform, and their implications for the interests of the Parkinson’s community.  As a non-partisan organization, PDF supports a balanced, bipartisan and comprehensive approach to legislation around health care reform that ensures that the complex needs of people living with Parkinson’s disease are addressed.   

The following is a list of principles that we believe should be included in any final legislation – whatever form it may take – if the interests of people with Parkinson’s and their families are to be well served.  We hope they will provide some common language for our community as they participate in the national conversation.  

In preparing this list, our staff and Board wish to express their gratitude to members of PDF’s own People with Parkinson’s Advisory Council (PPAC), whose members have been generous and wise in their comments and suggestions.

In order to meet the health care needs of people who live with Parkinson’s disease and their families, the Parkinson’s Disease Foundation takes the position that an acceptable national plan for health care reform should meet the following criteria:

  1. Assuring accessible and affordable coverage for all essential health services, recognizing the special needs of people who live with long-term neurodegenerative conditions such as Parkinson’s disease.  
  2. Assuring that no one will be denied coverage or charged a higher premium because of a pre-existing condition, including a diagnosis of Parkinson’s disease.
  3. Assuring that out-of-pocket costs to the person with Parkinson’s – including deductibles, co-payments, co-insurance and the expense produced by annual or lifetime caps – are kept affordable.
  4. Preserving an acceptable level of choice for all patients in health care provider relationships and among all health insurance plans, whether public or private.
  5.  Eliminating the current 24-month disability waiting period for Medicare coverage.
  6. Improving drug benefits provided through insurance programs, both public and private   – including removal of the “doughnut hole” in Medicare.
  7. Assuring services and support for people with cognitive and mental health issues that may be due to Parkinson’s disease or to the medicines that are used to treat it.
  8. Improving coverage for long-term care and services, including nursing-home, in-home and community services. 
  9. Providing coverage for accessible and necessary medical equipment – including walkers and other assistive devices that are needed by people with Parkinson’s.
  10. Improving the coordination of medical care for people with Parkinson’s and other conditions that often require the services of multiple health care providers.
  11. Assuring a commitment to reducing the disparities in access to health care that currently exist in such categories as income, geography and racial/ethnic/linguistic identity.
  12. Providing financial and other incentives to improve the level of education and training in Parkinson’s disease and other degenerative conditions among health care providers, including physicians, nurses and allied health professionals. 
  13. Exploiting the potential of new communications technologies – such as electronic medical records and telemedicine – in the provision of medical and other health care services.

These Principles are also available in .pdf format:

Download the Principles for Health Care Reform

Source Date: Sep 09 2009