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PHA Statement of Principles

The Pulmonary Hypertension Association is the nation’s oldest and largest non-profit organization serving patients, families and caregivers living with pulmonary hypertension.

Healthcare Reform

Congressional Luncheon 2010PHA's Statement of Principles on Healthcare Reform outlines our commitment to advocating for healthcare policies that meet the needs of the PH community.

In 2010, a variety of legislative and regulatory changes, including the Affordable Care Act (ACA), brought us closer to a healthcare system that meets these needs.

PHA continues to support the following changes being implemented by the ACA and other healthcare legislation as 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.

    • Under the ACA, health plans cannot limit or deny benefits or deny coverage for a child younger than age 19 (effective September 23, 2010) or adults (effective 2014) simply because the person has a “pre-existing condition”—that is, a health problem that developed before the individual applied to join the plan. Learn more

    • The ACA also prohibits waiting periods of greater than 90 days for private insurance coverage to begin (effective 2014).

  • Remove lifetime caps on health insurance benefits.

    • The ACA prohibits health plans from putting a “lifetime” dollar limit on most benefits you receive (effective September 23, 2010). The ACA also restricts and phases out the “annual” dollar limits a health plan can place on most of your benefits—and did away with these limits entirely in 2014. Learn more

  • Streamline access to specialists, including out-of-network specialists at nationally renowned centers of excellence.

    • The ACA provides a guaranteed external appeals process for beneficiaries in all health insurance plans. Denial of coverage for specialists and out–of-network providers can be reviewed by a third-party under this process. The legislation also provides grants to the states to create consumer assistance units to help beneficiaries with coverage related problems.

  • Establish a patient-centered system of care coordination (medical home or other) for patients with chronic illnesses.

    • The ACA provides states with the option of enrolling Medicaid beneficiaries with chronic conditions into a health home. Health homes would be composed of a team of health professionals and would provide a comprehensive set of medical services, including care coordination.

    • The ACA also establishes a new provider model known as Accountable Care Organizations (ACO) for Medicare patients. ACOs will accept responsibility for the cost and quality of care delivered to a specific population of Medicare patients. Physician practices that can be organized as patient-centered medical homes are the most likely candidates for ACO designation.

    • The bill also establishes the Center for Medicare and Medicaid Innovation which is charged with developing additional innovative delivery arrangements to improve quality and reduce the cost of care. Successful models, including medical homes, can be expanded nationally.

  • Create incentives for expanded coverage of clinical trials investigating new treatments for chronic and life-threatening diseases.

    • The ACA requires insurance coverage of routine patient care costs associated with clinical trials.

    • The 111th Congress also passed legislation that enables patients with rare diseases to be compensated for participating in a clinical trial (up to $2,000) without this income counting against their eligibility for means-tested programs such as Medicaid and Social Security Disability.

  • Aggressively fund biomedical research at the National Institutes of Health and disease prevention programs at the Centers for Disease Control and Prevention.

    • The ACA established the new “Cures Acceleration Network” at the NIH. This program is designed to speed the translation of basic biomedical research discoveries into new treatments and cures for deadly diseases.

    • In addition, the law creates a new “Prevention and Public Health Fund” designed to expand and sustain the necessary infrastructure to prevent disease, detect it early and manage conditions before they become severe. This new initiative will increase the national investment in prevention and public health, improve health and enhance health care quality. To date, $500 million has been released to support prevention, training and wellness projects across the nation.

  • 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.

    • This was accomplished as part of the American Recovery and Reinvestment Act, more commonly known as the “stimulus bill.” Twenty billion dollars was provided to support the transition to a standardized electronic medical record system by healthcare providers. Learn more

  • Streamline the Social Security Disability application process, and expand the Compassionate Allowances disability program for individuals with severe, life-threatening illnesses.

    • PHA continues to actively collaborate with the Social Security Administration to update their PH-related disability language and include PH in their Compassionate Allowances list. Learn more

We encourage policymakers to act aggressively in the 114th Congress, continuing efforts to reform our nation’s healthcare system and meet the needs of the nation’s most vulnerable populations.

If you have any questions or require further information, please 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.