Rare Disease Report Card: Policy Across the US

Policy regarding many topics varies throughout America as one moves from state to state, and rare disease policy is no different. Because of this, getting a holistic view of where we stand in terms of legislation can be difficult. Luckily, NORD releases a report card that grades each state on its response to rare disease issues.

Rare Disease Report Card

Called the State Report Card, NORD creates this document each year to provide a better understanding of where each state – and Washington D.C. – stands in terms of its response to rare disease issues. It focuses specifically on nine major policies that impact those with rare diseases, including newborn screening, drug costs, Telehealth, and Medicaid eligibility. Data on these issues and policies are compiled and analyzed through November 2021.

Important takeaway’s from this year’s report card include:

  • 21 states have officially created a Rare Disease Advisory Council through legislation
    • 6 of these states did so as of 2021
    • These councils’ purpose is to give the rare disease community an official, unified voice within the government
  • When it comes to protecting rare disease patients from the growing out-of-pocket cost of prescription drugs, only six states in the entire country were given an A
  • Only 11 states received an A in regard to the regulation of short-term insurance
    • These types of insurance plans let down rare disease patients by failing to provide them with the necessary care
  • 18 states were given an F when it came to Telehealth access
    • These states didn’t do enough to rid rare disease patients of barriers standing in the way of access to Telehealth

You can read the full report card here, including data personalized to your state.

Find the source article here.

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