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Nov. 4, 2013

TOPIC: Featured News, Patients & Members, Advocacy

Staying Focused on What Really Matters About the ACA

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Despite the current focus on logistical problems associated with the rollout of the Affordable Care Act, we must not forget that this law includes some important insurance reforms that were desperately needed, such as:

  • elimination of discrimination based on pre-existing medical conditions
  • elimination of annual and lifetime insurance caps
  • elimination of the practice of “rescission” or discontinuing healthcare coverage for individuals who receive dire diagnoses

Until recently, longstanding insurance practices discriminated against those who had the bad luck to be born with or develop serious diseases.  Patients and their families suffered major financial and emotional burden, and often were unable to access needed treatment.

NORD and our advocacy partners fought hard for these insurance reforms, and we remain committed to making sure they are implemented as intended.

To go back to the days when an infant born with a rare genetic disorder could face a lifetime of being denied medically necessary care is unthinkable.  To allow these important insurance reforms to be undermined by the politicization of healthcare reform would be irresponsible.

The federal Marketplace website will be fixed, and in the meantime there are other ways to explore the options for those who don’t currently have insurance or who feel there may be better alternatives for them.

You can apply by phone (800 318-2596), by mailing a paper application downloaded from the website (, or with an in-person helper in your local area.  (Visit to find a local person trained to assist with applications.)

You can also use a Subsidy Calculator created by the Kaiser Family Foundation to get an estimate of your eligibility for subsidies and how much you might spend on health insurance.

The ACA may not be perfect and its launch has experienced some bumps, but the insurance reforms it brings to our nation were desperately needed and remain a priority for NORD.

If you don’t have adequate insurance coverage, you owe it to yourself and your family to explore these new options.