Healthcare Coverage and Access Community Update

by Dale Dirks and Dane Christiansen, Washington Representatives

The fundamental structure and scope of the US healthcare system, including access to various forms of insurance, networks of specialized physicians, and innovative treatment options, has been a hotly debated topic on Capitol Hill since the beginning of the year. The “repeal and replace” of Patient Protection and Affordable Care Act (ACA/Obamacare) was a popular campaign promise for the new Congress and the incoming administration. Lawmakers in the House and Senate have been searching for a way to move forward with such an effort since the 115th Congress convened on January 3rd.

The reality is that American healthcare is incredibly complicated and making changes to one part of the system often has an immediate domino effect as well as unintended consequences for other parts of the system. This complexity has greatly slowed the repeal and replace effort as lawmakers search for a path that addresses ongoing issues (such as the rising cost of premiums) while not creating additional or more serious issues. To be clear, the ACA has not been repealed and no one is at risk of losing their insurance coverage as a result of government action during 2017. In fact, the most highprofile proposal working through Congress is a technical repeal of the ACA that maintains the current system for two to three years (at least) while lawmakers work out the specific details of a replacement plan.

The ACA was by no means perfect, but it was a step in the right direction for patients and families facing rare, chronic, and costly medical conditions. While the law made vast changes across healthcare, it also contained narrow protections crafted specifically to prevent medical bankruptcy, involuntary medical divorce, and spending down to qualify for Medicaid. These patient protections are often overlooked in the broader debate, but they disproportionately benefit individuals and families affected by GBS, CIDP, MMN, and variants. The lack of a cohesive plan and strategy in Congress to reform healthcare has led to the proliferations of numerous, competing proposals. Rather than evaluate each proposal for its various individual merits and drawbacks (and none of them are currently patient- entered,) Congress simply needs to ensure any serious repeal, replace, or repair effort includes the following “four pillars” of patient protection.

In this regard, please consider reaching out to the offices of your Members of Congress, educating them about the unique needs of this community using your personal story, and asking them to support the pillars below. GBS|CIDP Foundation International can support and assist you in your outreach, and please contact Lisa Butler, Executive Director,, if you are interested in making your voice heard on this important issue. Your personal outreach is incredibly important and your legislators will welcome your input as they try to make difficult decisions.

Community message to Congress as lawmakers consider changes to healthcare:
• First and foremost, the community has the right to review any replacement plan and judge whether it adequately addresses the needs of patients before the current system is repealed. Do not repeal the ACA until the replacement plan has been vetted by stakeholders.

• Secondly, there are critical patient protections with bipartisan support that must be part of any modifications to the healthcare system. The following four pillars are absolutely essential to patients and their families, and must be included in any serious proposal moving forward.

• Pillar 1: Prohibit pre-existing condition discrimination. Individuals must be able to equitably access comprehensive healthcare coverage regardless of their health status, diagnosis, and/or related factors.

• Pillar 2: Prohibit lifetime and annual caps on insurance benefits. Any individual that purchases healthcare coverage must not be able to outspend that coverage and expose themselves to additional, unaffordable fees.

• Pillar 3: Allow children to stay on family coverage until age 26. Families with affected members face unique and serious financial challenges. Therefore, prolonged stability is essential.

• Pillar 4: Limit out-of-pocket costs for patients. Enacting and preserving no-nonsense restrictions that cap out-of-pocket costs is the best way to keep coverage equitable and accessible to everyone.

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