Since 2015, the National Organization for Rare Disorders (NORD) has released an annual State Report Card that highlights state policies which could affect how people with rare diseases access care. The State Report Card aims to evaluate how effectively each state is serving people with rare diseases. For example, are necessary treatments covered for someone with a rare disease? In what ways is affordability a barrier?
A news release from early March 2024 shared that NORD recently released its State Report Card using compiled data that is current as of November 2023.
Grading Rare Disease Care Access: What This State Report Card Shares
The most recent State Report Card covered nine issues within the rare disease space. We will go over the most impactful findings below. However, it is important to note that these nine issues are not the only ones affecting the rare disease community. While we must advocate for change in these areas, we must also remember to share and advocate for the breadth of the rare experience.
If you want a list of how each state performed, head to the State Report Card for more detailed information. Once you click on a specific category, you can find more insight and analysis into states’ performances (including which and why certain states passed vs. failed).
Medicaid Financial Eligibility
In 2012, the Supreme Court determined that the Affordable Care Act’s establishment of a national minimum income level was unconstitutional. States were each given the chance to decide whether to expand Medicaid. While a majority of states expanded Medicaid to a minimum eligibility level of 138% of the FPL, 10 states have chosen to not expand Medicaid eligibility. This decision leaves millions of people, including those with rare diseases, without care.
Medical Nutrition
On the report card, 14 states received “D” or “F” grades for medical nutrition coverage. Many people with rare diseases require medical nutrition to ensure normal growth, contribute to health betterment, reduce potential comorbidities or harms from disease progression, and consume enough calories. For example, children with FPIES require a breastmilk diet—and those who need formula require a special hypoallergenic formula. However, shares NORD:
“Many insurers decline to cover medical nutrition because the FDA does not regulate it as a drug [and] insurers may view medical nutrition as elective in nature instead of the life-saving treatment that it is. As a result, many patients who need these life-saving treatments encounter significant financial barriers.”
Newborn Screening
Only South Dakota scored a “C” on this issue, with every other state receiving either an “A” or “B” score. NORD evaluated how successfully each state has implemented a newborn screening program, as well as how many conditions are included on state screening panels from the Recommended Uniform Screening Panel (RUSP).
Protecting Patients in State Medicaid Programs
NORD explains that:
“Section 1115 of the Social Security Act allows states to request authority to tailor their Medicaid programs while controlling health care costs and improving services for beneficiaries. Unfortunately, some states have used Section 1115 waivers to restructure Medicaid benefits and eligibility in ways that undermine the purpose of the program and could cause harm to people with rare diseases.”
Ultimately, 18 of the 50 states received failing grades.
Other Topics
The NORD State Report Card also includes information on protecting patients in state-regulated insurance, rare disease advisory councils (RDACs), prescription drug out-of-pocket costs, step therapy (fail first), and telehealth.
You can access NORD’s entire State Report Card here.
