Individuals and families affected by chronic, serious and life-threatening diseases such as muscular dystrophy, spinal muscular atrophy (SMA), and other neuromuscular disorders have unique needs and health care demands that span the course of a lifetime—and access to high-quality, affordable, comprehensive health insurance is essential. Protections that ensure access to care for those living with conditions including those under MDA’s umbrella—such as no preexisting condition exclusions, no annual or lifetime coverage maximums, and allowing young people to remain on their parents’ plan until age 26—are imperative to our community.
As health care discussions continue to evolve, MDA will continue to advocate for our Principles of Coverage that were developed in concert with over 30 leading patient advocacy groups to ensure that policy makers understand the elements of health care coverage that are essential to our community.
Principles of Coverage
It is important that key safeguards remain in place as health care reform is considered. Principles of Coverage that are essential include the following:
Health Insurance Must be Affordable: Affordable plans ensure patients can access needed care quickly from an experienced provider without undue financial burden. Affordable coverage includes reasonable premiums and cost sharing (such as deductibles, copays and coinsurance) and limits on out-of-pocket expenses. Adequate financial assistance must be available for low-income Americans and individuals with preexisting conditions should not be subject to increased premium costs based on their disease or health status.
Health Insurance Must be Accessible: All people, regardless of employment status or geographic location, should be able to gain coverage without waiting periods through adequate open and special enrollment periods. Patient protections including, but not limited to, prohibitions on preexisting condition exclusions, annual and lifetime limits, insurance policy rescissions, gender pricing, and excessive premiums for older adults, should all be retained. Children should be allowed to remain on their parents’ health plans until age 26 and coverage through Medicare and Medicaid should not be jeopardized through excessive cost-shifting, funding cuts, or per capita caps, work requirements, or block granting.
Health Insurance Must be Adequate and Understandable: All plans should be required to cover a full range of needed health benefits with a comprehensive and stable network of providers and plan features. Guaranteed access to and prioritization of preventive services without cost sharing should be preserved. Information regarding costs and coverage must be available, transparent, and understandable to the consumer prior to purchasing the plan.
The role that these and other measures play is significant in helping people with neuromuscular disease attain the coverage they need to live longer, healthier lives.
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