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NORD's Annual State Report Card: A Vital Tool for Rare Disease Communities

The National Organization for Rare Disorders (NORD) has released its 10th annual State Report Card, a significant resource for tracking the effectiveness of state legislatures in addressing the concerns of over 30 million Americans impacted by rare diseases. As state legislative sessions reconvene, this report serves as an essential benchmark, illustrating both the progress made and the path ahead for healthcare policies that affect those with rare medical conditions.

Key Improvements in the 2024 State Report Card

In the 2024 edition, notable advancements were observed across several areas that influence patient access to treatments and affordable care. With new policies kicking in, these improvements have historic implications for children and families coping with rare diseases.

Medicaid/CHIP Continuous Eligibility

Effective from January 1, 2024, all states must provide 12 months of continuous eligibility for children under 19 on Medicaid and the Children’s Health Insurance Program (CHIP). This change is monumental, as it reduces bureaucratic hurdles and streamlines access to necessary health services. Five states (Colorado, Hawaii, Minnesota, New York, and Pennsylvania) have even received waivers under Section 1115, allowing for further enhancements in eligibility for certain individuals.

Step Therapy Reforms

Illinois has taken a bold step forward by enacting a law prohibiting step therapy, a common insurance practice requiring patients to try less expensive alternatives before the prescribed medication. In total, more than 40 states now have implemented some form of protection against these practices, with Vermont and Wyoming joining the ranks in pushing for patient-friendly reforms. This development ensures that patients receive timely and proper care without unnecessary delays.

Out-of-Pocket Prescription Cost Protections

Four states have introduced new laws regulating out-of-pocket costs for prescription medications, enabling better access to essential treatments. For instance, Rhode Island has capped out-of-pocket expenses for specialty drugs at $150, while Vermont, Oregon, and Nevada have banned copay accumulator programs that previously shifted financial burdens onto patients. These legislative actions can alleviate financial strain for countless families navigating the complexities of rare disease treatment.

Additional Significant Changes

The year has also witnessed the expiration of harmful waivers in states such as Indiana and Michigan, which previously limited access to healthcare for Medicaid patients. Additionally, twenty states expanded their newborn screening panels to be consistent with the federal Recommended Uniform Screening Panel (RUSP), reflective of growing commitment towards early disease detection.

Florida recently achieved the milestone of becoming the 40th state to join the Interstate Medical Licensure Compact (IMLC), facilitating easier access to telehealth services and enabling physicians to provide care across state lines. Furthermore, as of 2024, thirty states boast Rare Disease Advisory Councils (RDACs), with additional states such as Mississippi and California legislating their formation.

Continuous Advocacy for Rare Disease Policies

According to NORD CEO Pamela Gavin, the annual report card illustrates the organization’s ongoing advocacy efforts aiming to support individuals affected by rare diseases. NORD, which has championed this cause for over 40 years, remains dedicated to working with lawmakers, from seasoned politicians to newcomers, ensuring that they focus on the needs of the rare disease community.

‘As state legislative sessions get underway, NORD's latest State Report Card provides a crucial benchmark to monitor how well states serve their rare disease communities,’ stated Gavin.

NORD's Vice President of Policy and Regulatory Affairs, Heidi Ross, emphasized, ‘These achievements result from the collective efforts of the rare disease community and lawmakers working diligently to enhance the quality of life for affected families. The State Report Card is intended to be an advocacy tool, facilitating discussions around policy advancements.’

In conclusion, the 2024 State Report Card signifies more than just state evaluations; it embodies the hope and progress towards enhanced care for Americans living with rare diseases. By continuing to advocate for further legislative changes, NORD aims to bridge existing gaps in healthcare and to build a brighter future for patients and their families.