Your Voice Matters

FEDERAL

Staff from ALS United Greater New York, traveled to Washington D.C. on April 30th, where they met with New Jersey patient advocate Melanie Craig, accompanied by her husband and son, to advocate for legislative measures aimed at significantly improving the lives of individuals affected by ALS. Meetings were successfully held with prominent figures including Majority Senate Leader Chuck Schumer, Representative Tom Suozzi, as well as staff from the offices of Senator Cory Booker, Representative Grace Meng, and Representative Mikie Sherrill. All expressed receptiveness to cosponsoring our legislative requests, which encompassed the Justice for ALS Veterans Act (H.R. 3790 / S. 1590) and the ALS Better Care Act (H.R. 5663 / S. 3258).

The I AM ALS Community Summit & Third Annual DC ALS Awareness Event was held in Washington, DC May 29 – June 1, 2024. Several ALS United Greater New York staff attended the Summit, participated as moderators, and legislative captains, and met with patients and advocates from our region.

STATE

ALS United Greater New York, in conjunction with 14 other organizations, made several trips to Albany to advocate for the passage of Genetic Testing Protections legislation in New York. This legislation (S.5415a/A.2083a and S.1208/A.7451) is aimed at preventing genetic discrimination and ensuring equitable treatment based on individuals’ genetic information. Despite the enactment of the Genetic Information Nondiscrimination Act (GINA) a decade ago to address concerns regarding genetic discrimination, certain insurance sectors such as life, long-term care, and disability insurers remain unregulated. Given that 10% of ALS diagnoses stem from familial ALS, which can be hereditary, it is imperative that families can access genetic testing without concern of discrimination by insurers.

Earlier this year, New Jersey Governor Murphy proposed budgetary cuts that would precipitate a staggering 66% reduction in ALS funding for residents of New Jersey. In response, both ALS United member organizations representing individuals living with ALS in New Jersey testified before the Assembly and Senate Budget Committees, urging lawmakers to maintain funding at the previous year’s level of $1.5 million. Staff at both organizations actively engaged with New Jersey Senators and Assembly members, soliciting their support to submit a budget resolution advocating for no cuts to this year’s budget. Unfortunately, despite best efforts, the final budget did not reinstate the full amount and only included $500,000 to be split between both organizations. We remain hopeful that we can secure a better outcome next year.