The Pulmonary Hypertension Association is the nation’s oldest and largest non-profit organization serving patients, families and caregivers living with pulmonary hypertension. As Congress considers legislation to reform the nation’s healthcare system, we urge adoption of the following recommendations which are central to improving the quality of care for our patients:

  • Ensure that every American has healthcare that is universal, continuous (portable), affordable, sustainable, and accessible.
  • Eliminate pre-existing condition coverage exclusions and waiting periods in all health insurance plans.
  • Increase lifetime caps on health insurance benefits.
  • Eliminate the two-year waiting period for Medicare coverage of patients deemed disabled by the Social Security Administration.
  • Streamline access to specialists, including out-of-network specialists at nationally renowned centers of excellence.
  • Establish a patient-centered system of care coordination (medical home or other) for patients with chronic illnesses.
  • Create incentives for expanded coverage of clinical trials investigating new treatments for chronic and life-threatening diseases.
  • Aggressively fund biomedical research at the National Institutes of Health and disease prevention programs at the Centers for Disease Control and Prevention.
  • Fund, establish, and administer a system of electronic medical records and other health information technologies aimed at improving quality, reducing medical errors, increasing administrative efficiencies, and reducing costs.
  • Streamline the Social Security Disability application process, and expand the Compassionate Allowances disability program for individuals with severe, life-threatening illnesses.

We encourage policymakers to act aggressively in the 111th Congress to reform the healthcare system and provide coverage to the estimated 47 million Americans who are currently uninsured. If you have any questions or require further information, please do not hesitate to contact Katie Kroner, Director of Advocacy and Awareness for the Pulmonary Hypertension Association at 301-565-3004 x749.


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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.