Health care reform is a topic many of us are thinking about as Congress and the Trump administration have made changing the current law a top priority. As policy makers are considering various options to modify or replace the Affordable Care Act (ACA), MDA is working to ensure that individuals and families affected by chronic, serious and life-threatening diseases maintain health care access and coverage. Individuals and families living with muscular dystrophy, spinal muscular atrophy (SMA) and other neuromuscular disorders under MDA’s umbrella have unique medical needs and health care demands that span the course of a lifetime. For this reason, MDA believes any reform measure must support a health care system that provides affordable, accessible and adequate health care coverage.

Today, MDA and a coalition of national non-partisan patient groups — including the American Heart Association, the Cystic Fibrosis Foundation and March of Dimes, among others — joined together in support of Principles of Coverage that our organizations would expect to see in any health care reform effort. The purpose of the Principles is to ensure that policy makers understand the elements of health care coverage critical to our communities, and that the needs of the millions of individuals and families that we collectively serve are known and are taken into account in any reform effort.

The Principles of Coverage explain that health insurance coverage must be affordable, accessible, adequate and understandable, as set out below:

Health Insurance Must be Affordable: Affordable plans must ensure patients are able to access needed care in a timely manner 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. 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 in current law should be retained, including prohibitions on preexisting condition exclusions, annual and lifetime limits, insurance policy rescissions, gender pricing and excessive premiums for older adults. Children should be allowed to remain on their parents’ health plans until age 26. Coverage through Medicare and Medicaid should not be jeopardized through excessive cost-shifting, funding cuts, per capita caps 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.

If preserving these Principles is important to you and your family, we encourage you to join our advocacy efforts. Please take a moment to share your story with your members of Congress today through this link. Your personal experience about why your coverage matters and how access to coverage impacts you is a critical part of the discussion. Health care access will also be a central focus of MDA’s upcoming advocacy conference. Please join us for discussion of this and other policy priorities with dozens of other passionate MDA advocates.