A new bill from Assemblyman Eichenstein (48/D) and Senator Hoylman-Sigal (47/D), can help children with rare and other serious medical conditions get care by making it easier for their families to seek treatment from out-of-network specialists.

Under A.2384/S.965, health plans* would cover visits to out of network specialists for children with rare, life-threatening, degenerative/disabling condition or medically fragile, under certain conditions:

• The child’s primary doctor writes a letter of need

• The chosen specialist notifies the health plan on advance

• The chosen specialist is certified as a specialist in that area

• The chosen specialist accepts the health plan’s normal rate for specialist care

• The health plan does not have to cover travel for out of area specialists

*Self-insured health plans are not covered because of the federal ERISA exemption. 

Access to out-of-network specialists can be life altering for children with rare diseases. On average it takes 5-7 years for a child with a rare disease to receive a diagnosis. In that time the child’s disease can progress, leading to worsening symptoms, and the need for more, often expensive care. In the most serious cases the delay of treatment can lead to permanent disability or be fatal.

The bill represents a compromise in that health plans only pay their normal rates, while families have more chances to see urgently needed specialists. With more than 10,000 identified rare diseases families already struggle to find help for their children. A.2384/S.965 helps to make the search for care a little easier while keeping costs to the health plans in check.

Read a full report on the bill here.