Bill S.1287a / A.1296a, from Senator Roxanne Persaud (19/D) & Assemblywoman Amy Paulin (88/D), passed the NY Senate unanimously on March 19., following unanimous passage by the Health Committee March 4th. The bill now needs passage by the Assembly Ways & Committee to advance to a vote by the full Assembly. 

Efforts to pass the bill are being led by the National Organization of Rare Disorders and a coalition of New York state rare disease groups. To mark rare disease day 2025, members of the NYS rare disease community joined NORD for a patient advocacy day in Albany on 2/25 to press for the RDAC bill. NY is part of the NORD campaign to establish RDACs in all 50 states, with 29 states adopting a council co far.

The bill will create a permanent rare disease advisory council under the Dept. of Health to study the needs of people with rare diseases and make recommendation for addressing them.  The RDAC will build on the Rare Disease Work Group which released it's report 12/24. Among it's recommendations are the establishment of a permanent council to focus on rare disease needs. When established, a New York State RDAC  will consist of patients, healthcare providers, pharma, and health plans. Read the bill and get updates on it's progress.

The bill has until mid June to pass before the Legislature goes on recess.

Click here to support the NYS RDAC bill! 

Hear Vito Grasso, father of a daughter with a rare genetic disease and executive vice president of the New York State Academy of Family Physicians, as he speaks with host David Lombardo on the WCNY news show Capitol Pressroom this March to make the case for a New York State Rare Disease Advisory Council.  Listen here

See Frank Rivera, a person with a rare disease and other rare disease patient advocates from across New York state work to raise awareness of rare diseases and make the case for a New York State Rare Disease Advisory Council in Albany this February for national rare disease day on the Spectrum News 1 show.  Watch here. 

In late December Gov. Kathy Hochul signed step therapy reform bill S.1276a/A901a by Senator Neil Breslin (46/D) and Assemblyman John McDonald III (108/D) into law, following a long effort by patient and provider groups from across New York State and national advocacy organization Aimed Alliance. 

The bill places guardrails on the use of step therapy by state regulated health plans (incl. Medicaid, commercial plans, and ACA/NY state exchange plans, but not self-funded plans) such as:  

• Prohibits off-label stepping;

• Limits step therapy to no more than 2 drugs;

• Limits step therapy to no more than 30 days or a timeline established by current evidence-based guidelines; and

• Requires health plans to accept a health care provider's attestation that a patient has tried and failed on a medication previously. 

The new law takes effect 1/1/26 to give health plans time to adjust their policies. 

Step therapy is a form of utilization management used by health plans and PBMs to cut costs by requiring patients to try one or more less expensive medications before they can receive the medication originally prescribed. Step therapy is an issue  for people with serious medical conditions because it can delay their treatment and lead to a worsening of their condition. Read a FAQ about the new step law here.

This bill builds on a 2016 New York law. Several other states have adopted or are considering step therapy reform, and many patient organizations are pushing for a national step therapy reform bill called the "Safe Step Act" to address this problematic practice.