Looking Ahead: Advocacy Efforts in 2024

This article was originally published in our Spring 2024 Bleeding Times Magazine. See the entire magazine by clicking here.

Article Author: Jessica Graham, NY State Bleeding Disorders Coalition Coordinator

In mid-March, community members from all across New York State—including a large group from the New York City area—will take part in Albany Days, NYSBDC’s annual advocacy program for people with bleeding disorders!

This year’s program promises to be jam-packed, starting with the READI Program for teens and their parents, and adults that are new to advocacy, where attendees will be introduced to the basics of becoming an effective advocate. We will then be joined by community leaders and some of our more seasoned advocates for a deep dive into this year’s legislative “asks” and an opportunity to work together in groups to develop their “game plans” for the following day’s legislative meetings.

Last year, we met with more than 40 legislative offices and built support for several important bills, including one requiring marketplace plans to give patients written notice of their rights in the case of step therapy denial, which Governor Hochul then signed into law in December!

This year, we’ll be focused on the following legislation:

• S.1267/A.901 would establish certain “guardrails” regarding the use of step therapy by marketplace plans
• S.3400/A.7268 would limit pre-authorization requirements by marketplace plans
• S.2821B/A.4053A would expand eligibility and benefits for temporary disability insurance and paid family leave benefits

March is Bleeding Disorders Awareness Month (BDAM) in New York State!

In addition to meeting with legislators, advocates at Albany Days help raise awareness for bleeding disorders at our display table in the State Capitol. Last year, several were even able to watch from the Senate chamber as Senator Kennedy brought the BDAM resolution to the floor. Many thanks to Senator Kennedy and Assemblymember Conrad for sponsoring the 2024 resolution.

Possible health coverage expansions for 2024
Governor Hochul has applied to the federal government for two important waivers to expand health coverage for NYers, including one that would provide continuous coverage for children 0-6 years old who qualify for Medicaid or Child Health Plus, and another that would increase the income eligibility for the Essential Plan from 200% of the Federal Poverty Level (FPL) to 250%. These expansions could benefit many NYers, including those with bleeding disorders, so stay tuned for more information.

Learn more about advocacy and get involved today at www.nysbd.org.