As the House and Senate continue their consideration of health care legislation in Washington we wanted to again provide you with NMF's Statement of Principles on Health Care Reform and encourage you to be in touch with your legislators on this important issue.  Our message to lawmakers is that any healthcare legislation should incorporate these key reforms that are of critical importance to patients with Marfan syndrome and related disorders.

NATIONAL MARFAN FOUNDATION
POSITION PAPER
HEALTH CARE REFORM
111TH CONGRESS

The National Marfan Foundation is the nation's oldest and largest organization dedicated to serving the estimated 200,000 Americans living with Marfan syndrome or a related connective tissue disorder. As Congress considers legislation to reform the nation's health care system, we urge adoption of the following recommendations which are central to improving the quality of care for our patients:

1.    Ensure that every American has healthcare that is universal, continuous  (portable), affordable, sustainable, and accessible.

2.    Eliminate pre-existing condition coverage exclusions and waiting periods in all health insurance plans.

3.    Eliminate lifetime caps on health insurance benefits.

4.    Eliminate the two-year waiting period for Medicare coverage of patients deemed disabled by the Social Security Administration.

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

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

7.    Create financial support via tax credits or deductions for patients with chronic illnesses to mitigate the financial burden of their disease.

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

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

10. Support Comparative Effectiveness Research analyzing clinical outcomes, risks and benefits of two or more treatments addressing a particular medical condition.

11. 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.

12. Streamline the Social Security Disability application process, and create a nationwide system of temporary disability for illnesses expected to last more than one month and less than a year.

We encourage policymakers to act aggressively in the 111th Congress to reform the health care 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 the National Marfan Foundation at 1-800-8-MARFAN.