S.965 (Hoylman-Sigal) / A.2384 (Eichenstein): Requires insurers to provide coverage for rare diseases, life-threatening conditions, degenerative and disabling conditions, or diagnoses involving medically fragile children. Read the bill and get updates: https://www.nysenate.gov/legislation/bills/2025/S965
S.1287a (Persaud)/A.1296a (Paulin): Will create a permanent RDAC to study the needs of people with rare diseases and make recommendations on them. The bill has passed the Senate and sits in the Assembly Ways & Means Committee. Read the bill and get progress updates: https://www.nysenate.gov/legislation/bills/2025/S1287
S.2398 (Persaud) Requires genetic testing results only be received by patients and health care providers providing direct care while health insurance companies only receive a record that the genetic testing was performed. Read the bill and get progress updates https://www.nysenate.gov/legislation/bills/2025/S2398
A.183 (Rosenthal) / S.3029 (Stavisky): bill creates process to license Genetic Counselors and create a state board for genetic counselors (currently NYS does not license them). The bill currently sits in the Higher Education committees. Read the bill and get progress updates: https://www.nysenate.gov/legislation/bills/2025/A183
A.2714 (Rosenthal): Provides additional $15 monthly under SNAP allowance of $15 for menstrual products, including but not limited to, tampons, sanitary napkins, cups and panty liners. Read the bill and get progress updates https://www.nysenate.gov/legislation/bills/2025/A2714?utm_campaign=subscriptions&utm_content=new_prev_ver&utm_medium=email&utm_source=ny_state_senate
S.172 (Ramos) / A.084 (Solages): Increases Temporary Disability Insurance Benefita and expands coverage for individuals temporarily unable to work due to illness and childbirth. Read the bill and get progress updates https://www.nysenate.gov/legislation/bills/2025/S172
S.1633 (Fernandez) / A.2613 (Lunsford): Provides protections for sensitive health information and requires health info networks, systems, and providers to provide patients a right to restrict disclosures of info. Read the bill and get progress updates https://www.nysenate.gov/legislation/bills/2025/S1633
To learn about how bills are created and passed, go to Advocacy Tools for You
Health policies & programs are often passed in the state budget. We try to keep you informed here. We don't cover everything in the budget due to space and time limitations.
Read about the full budget process
May 9, 2025: Budget Passed
Governor Hochul, the Senate and Assembly have reached a final agreement on the state budget for Fiscal Year 2025 - 2026. While the voting process can take a few days, once the bills start coming out it essentially means the task is complete. Read more here.
Mar. 11, 2025: Legislature Releases One-House Budget Counter proposals
The Senate & Assembly released their final big-picture budget counter proposals and now the final budget negotiations begin. Read more here
Feb. 21, 2025: Governor releases 30-day amendments
Gov. Hochul released her 30-day amendments to the proposed state budget. These usually reflect technical corrections to the proposal and changes resulting from early negotiations with the Legislature.
Feb. 1, 2025: Legislature issues first response to budget proposal
The Senate & Assembly issued their first official response to the Governor's budget proposals. Known as the Blue Book (Senate) and Yellow Book (Assembly) they can be found on the legislature's websites. Legislative website links
Jan. 28, 2025: Budget hearings have begun!
The state Senate & Assembly has started joint hearings on the Governor's proposed budget. There are different hearings for each section of the budget, and guests are invited to testify in their area of concern. Written testimony can also be submitted. Click to see the hearing schedule.
Jan. 21, 2025: Gov. Hochul delivers state budget proposal
NYS funds many vital healthcare programs like Medicaid, the Essential Plan, infant testing, & health related agencies like the Dept. of Health. NYS also passes many health laws & programs in the state budget. https://www.budget.ny.gov/
Jan. 14, 2025: Gov. Hochul delivers her State of the State speech
The Governor uses this speech to explain many of her policy priorities & proposals for the year, including many health proposals. Read the speech proposals here
Jan. 8, 2025: 2025-2026 Legislative Session begins
The state legislature has kicked off their 2025 - 2026 legislative session. Regular meetings have begun and committee appointments will be announced soon. The 2025 session schedule for the Senate & Assembly can be found here: Senate Assembly
These links are all to public sources of information. They're provided to help the rare disease community stay informed and better able to advocate for themselves. NYSRDC is a non-partisan, non-political project. If you have feedback on this list you can email us at info@nysrdc.org
The NY Dept. of Financial Services regulates health plans and handles complaints about them. https://www.dfs.ny.gov/
The NYS Dept. of Health is responsible for running many state health services and enforcing health laws. https://www.health.ny.gov/
City & State is a news service with lots of current info about NY governemnt news and events. https://www.cityandstateny.com/
NY State of Politics covers events and issues in NYS government as well as some national news https://nystateofpolitics.com/state-of-politics/new-york
An experienced advocacy firm that offers a newsletter with information on state government workings https://odonnellsolutions.com/
A website that aggregates news from around New York State with a focus on NY state government. https://empirereportnewyork.com/
An experienced advocacy firm that offers a newsletter with information on state government workings. https://www.dickinsonavella.com/
New York Focus is a nonprofit, nonpartisan newsroom covering state and local politics in NYS. https://nysfocus.com/
The NIH offers national news on health care and health policy related issues and events. https://www.nih.gov/news-events
Politico also has a section of news coverage specifically about healthcare policy in the US. https://www.politico.com/healthcare-news-updates-analysis
Fierce Healthcare has national news on healthcare policy, health insurance companies, and PBMs. https://www.fiercehealthcare.com/
Kaiser Health News is a national non-profit organization that specializes in health care policy and news. https://kffhealthnews.org/