when in-network isn’t enough

 S.965 (Hoylman-sigal)/A.2384 (Eichenstein)

The need for out-of-network care means more out-of-pocket costs to families, and can compound the stress of caring for a child with lasting medical needs. In the U.S., the reality is that the more health care needs you have, especially from specialists, the greater chance you will find your needs won’t be met, even if you have private insurance coverage. (Kids with Complex Conditions Often Lack Adequate In-Network Care, 2022)

In a study of more than 1800 ACA silver plan networks, 44% of pediatric networks had no specialists who practiced in the underlying area compared to 10% of adult networks. (Wong et al., 2017b)

When in-network coverage isn’t adequate to meet the needs of children with rare, life-threatening, or disabling conditions, care is delayed and families suffer.

Legislators can help make a difference by supporting S.965/A.2384. “An act to amend the insurance law and the public health law, in relation to providing insurance coverage for rare diseases, life-threatening conditions or diseases, degenerative and disabling conditions, or diagnoses involving medically fragile children.”

On average, it takes 4.8 years and consultations with more than 7 specialists for a rare disease patient to receive an accurate diagnosis. (The Diagnostic Journey for Rare Disease Patients: Scaling Sustainable Solutions, 2021)

According to NYS DOH Rare Disease Workgroup Report (Dec. 2024), there are shortages of relevant specialists, and long waits to see them are common. Specialists are often concentrated in large academic medical centers, often resulting in significant geographic disparities and high transportation costs. In NYS, the four Rare Disease Centers of Excellence are all located in New York City.

S.965/A.2384 allows parents of children with rare, fragile, & deteriorating conditions to access out-of-network specialists with crucial expertise for diagnosis & disease-specific care. Health plans must be notified in advance and are only required to cover these services at their established in-network rates.

For more information, please contact Bob Graham, Patient & NYSBDC Public Policy Director at bobgraham@nysbd.org