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Over the past few years, Congress has worked to develop legislation that will repeal and replace the Affordable Care Act (ACA). No matter your political views, changes to the ACA will affect everyone. People with primary immunodeficiency diseases (PI) and other rare, chronic conditions rely on protections established by the ACA. The protections to be maintained must:

  • Ensure access to affordable, comprehensive insurance and necessary treatments for people with pre-existing conditions,
  • Continue to prohibit annual and lifetime caps on insurance coverage, and
  • Continue limits on annual out-of-pocket costs.

No Exclusion for Pre-existing Conditions

This patient protection is invaluable for the PI community and prohibits against the discrimination that existed pre-ACA when insurance companies were permitted to deny or limit coverage to individuals solely because they had a disability or some other pre-existing condition. For those with a pre-existing condition who did have coverage, there was always the fear that if they lost their job or source of insurance, they would be unable to get other coverage. The ACA prohibition against denial of coverage for pre-existing conditions represented a huge step in eliminating one of the last areas of discrimination against people with pre-existing conditions, like PI. The Immune Deficiency Foundation (IDF) will continue to advocate for this vital patient protection to remain intact. 

No Annual or Lifetime Caps

IDF will continue to fight to ensure that insurance companies are prohibited from setting annual or lifetime limits health coverage benefits. Continuing the prohibition against lifetime monetary caps is a necessary provision to ensure that individuals with PI need not worry about their benefits running out. Similarly, without the prohibition on annual caps, many people would be faced with the choice of financial ruin or noncompliance with the medication they need to stay healthy for the rest of the year. Individuals with PI and their families who have paid for health insurance need to know that necessary medical treatment extends throughout the year and for their entire lifespan.

Continue Limits on Annual Out-of-pocket Costs

IDF remains committed to advocating for affordable access to healthcare for individuals with PI, and limits on annual out-of-pocket costs is vital to ensuring that access is maintained. Individuals with PI often face very high out-of-pockets costs for their treatments, many meeting their insurance deductible in the first few months of the year, and their out-of-pocket maximum shortly thereafter. Many people with PI struggle to meet that financial obligation before their insurance benefits begin covering their treatments. Eliminating a limit on annual out-of-pocket costs, thus extending that financial obligation, would be detrimental to the PI community and could likely lead to patients skipping treatments that they cannot afford. IDF will continue to advocate for continued limits on annual out-of-pocket costs to ensure the PI community maintains affordable access to the healthcare they need.

IDF will continue to strongly oppose legislation that threatens these vital patient protections and is working diligently with the American Plasma Users Coalition, National Health Council and other patient advocacy groups to oppose any such measures.

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