The State Legislature and Governor have a major impact on healthcare policy. Here are events and proposals that relate to them and rare disease advocates.
Governor releases 30-day amendments. (2/21/25) 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.
Legislature issues first response to budget proposal. (2/1/25) 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
Budget hearings have begun! (/1/28/25) 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.
Gov. Hochul delivers state budget proposal. (1/21/25) 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/
Gov. Hochul delivers her State of the State speech. (1/14/25) 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:
https://www.governor.ny.gov/sites/default/files/2025-01/2025StateoftheStateBook.pdf
2025 - '26 Legislative Calendar - (1/8/25) 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
NYS Dept. of Health releases Rare Disease report (12/24) The report from the temporary NYS Rare Disease Work Group details many pressing and unmet needs of people with rare disease in New York State and also offers many recommendations for addressing these needs. For the full report: https://www.health.ny.gov/diseases/rare_disease/docs/workgroup_report.pdf
NYS Dept. of Financial Services releases PBM rules. (7/24) The rules govern Pharmacy Benefit Mangers operating in NYS. Previously PBMs weren't regulated by NYS. PBMs are middlemen managing drug benefits for an estimated 275 million Americans. Read the new rules here: https://www.dfs.ny.gov/reports_and_publications/press_releases/pr20241120
To learn about how bills are created and passed, go to Advocacy Tools for You
Rare/Fragile Child Coverage 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
Rare Disease Advisory Committee 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
Genetic Test Non-Disclosure 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
Licensing requirements for genetic counselors 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
Add Coverage for Menstrual Products to the NY Supplemental Nutrition Assistance Program 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
Increases short-term disability benefits 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
Medical privacy bill 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
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
Read an overview of the proposed budget
National events that may affect healthcare for people with rare diseases in NYS.
All commercial prescriptions dispensed at CVS pharmacies will be processed through its CostVantage reimbursement model beginning this year, CVS announced Monday.
Under the model, prescriptions are priced based on the underlying cost with a delineated markup and dispensing fee to cover the services provided by CVS in the transaction. The company says this model makes it less necessary to raise the cost for certain prescriptions to cover losses on other drugs.
The model also seeks to increase transparency for insurers and pharmacy benefit managers, making it easier for PBMs to establish their own transparent programs for plans and clients. CVS Health said their team is also working to expand the program to Medicare and Medicaid prescriptions.
The Department of Health and Human Services (HHS) proposed a rule days before the new year began to hold healthcare organizations to a higher standard for protecting sensitive healthcare information from security threats like cyberattacks targeting patient information.
The proposal will require entities covered by the Health Information Portability and Accountability Act (HIPAA) to achieve specific technical standards like encryption and multifactor authentication. The rule also holds business associates to higher security standards and emphasizes that group health plans have a responsibility to protect electronic health information.
More than 23 million people have selected coverage on the Affordable Care Act's exchange as part of open enrollment, according to data from the Centers for Medicare & Medicaid Services (CMS).
CMS said the 23.6 million sign-ups to date includes 3.2 million new enrollees, meaning the number of people with marketplace coverage has grown by 11.6 million since 2021.
About 20.4 million people who had coverage in 2024 selected a new plan for 2025 or were automatically renewed in their previous plan, according to the agency. This continues to be on pace to set a new record for plan selections, according to CMS.
The ACA (“Obama Care”) is also NY state law, so Congress can't repeal it here. However, Congress can end premium subsidies and limit coverage rules. This can lead to people losing good coverage, then they may spend down to qualify for Essential Plan or Medicaid coverage.
The new administration may support consolidation and less regulation., leading to more utilization management from health plans, (preauthorization, step therapy, etc.) and less robust coverage, both of which may then lead to more problems with Medicare advantage plans.
The new administration is not friendly to Medicaid. This can be a problem as NYS is a Medicaid expansion state and needs federal funds for Medicaid and Essential Plan. These programs cover approx. 8 million people in NYS. If Congress cuts Medicaid, the state will have to raise taxes and/or limit what they spend on care.
The recent Supreme Court Chevron ruling may limit what the incoming President can do if he seeks to loosen or reverse current health care regulations through administrative/agency actions.
While one party controls Congress, many members must walk a fine line as they represent divided districts and face a midterm election in 2 years that tends to disfavor the party in power.
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/