The New York State Sickle Cell Disease Partnership (NYSSCDP) and the New York Coalition for Bleeding Disorders (NYCBD) were scheduled to be in Albany Monday, March 16, at the State Legislative Office Building (LOB). We planned tabling activities and meeting with representatives to support three bills relevant to the collective inherited blood disorder community of New York State.
The following week, all state and municipal offices were close. Legislators returned to their district offices, were they continued to work on addressing the COVID-19 public health emergency, and all other matters of concern for their constituents.
To remain diligent in the advocacy for the 2019 Sickle Cell Treatment Act, and other legislation important to families impacted by inherited blood disorders, the NYS Sickle Cell Disease Partnership (NYSSCDP), and the NY Coalition of Bleeding Disorders (NYCBD) are moving our advocacy and education of current state legislation online.
The New York State Sickle Cell Disease Partnership formed by the following organizations: Candice’s Sickle Cell Fund, Inc.; Falling Angels Sickle Cell Foundation; Roc City Sicklers; Sickle Cell Awareness Foundation Corp International; and the Sickle Cell Thalassemia Patients Network.
Along with the New York State Bleeding Disorders Coalition representing Hemophilia & von Willebrand Disease, we are working to educate our communities about legislation that will benefit all families living with inherited blood disorders.
Your support is needed to help reach New York State Assembly and Senate members to talk with them about Sickle Cell Disease and Bleeding Disorders.
Click on the highlighted links below to become more familiar with each of the listed bills. Summaries titled “Memorandum of Support”. Click on each act highlighted below to read the memorandums.
You can support this effort by:
- Clicking on these links to find your assembly member and senator.
- Visit their Contact page to send an email asking her or him to support
- The Sickle Cell Treatment Act of 2019 A6493 / S2281
- The Prior Authorization Act A3038 / S2847
- The Campaign for New York Health A5248 / S3677
- Look through the list of co-sponsors on each bill to see if the assembly member and senator is a co-sponsor. If their name does not appear, you can ask your representative to become a co-sponsor on each of the proposed acts.
- Visit your state representative’s Instagram, Twitter, and Facebook pages. Say hello, and make your ask via social media.
In addition to contacting the state representative in your district, you can also contact the chairs for the Health, Finance, Aging, Families and Children, Task Force on Women’s Issues, the Black, Puerto Rican, Hispanic and Asian Legislative Caucuses, and the New York State Rare Disease Caucus Legislative Caucus.
AM A. Hyndman, AM R. Gottfried, Sen J. Sanders, Jr, Sen N.D. Breslin
Join us in thanking Assembly Members Alicia Hyndman, and Richard Gottfried, Senator James Sanders, II, and Neil D. Breslin, for their sponsorship of the progressive bills mentioned in this article. The sickle cell community’s advocacy for these acts to be passed and become law, will improve the quality of care throughout the state, save lives and produce healthier outcomes for living with inherited blood disorders..
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