ALS Legislative Priorities

New York and New Jersey need to continue to support and provide funding to increase access to caregiver support programs, including respite care, home- and community-based care, and local ALS support services. Over the last several years, both states have generously supported funding of our critical programs and ALS Centers. ALS Greater New York has successfully advocated for and received state funding from New York and New Jersey legislatures. In 2023, we increased our request significantly over previous years’ allocated funding.

• New York 1267 would require a utilization review agent to follow certain rules when establishing a step therapy protocol – ACTIONS: Passed the Senate on January 17, 2023. The Same As bill, A. 901 has been sent to the Insurance Committee. The Greater New York Chapter submitted a Memo of Support

Increasing Access to Telehealth Services: Virtual care improves patient access to high-quality care well beyond the COVID-19 pandemic. More communities than ever have experienced telehealth's powerful impact on bridging gaps in care, especially underserved and rural communities that historically have had limited access to specialty care can now see top specialists due to expanded access to telehealth services.

• New Jersey 2703 Allows health care providers located outside New Jersey to provide healthcare services to New Jersey residents using telemedicine and telehealth.
• New York 2776 Expands the healthcare services provided by telehealth.

ALS in the U.S. is not a nationally notifiable condition and, therefore, is not reported to state and local health officials and federal health agencies such as the Centers for Disease Control and Prevention/Agency for Toxic Substances Disease Registry. In order to best estimate prevalent ALS cases, the National Registry employs self-reported data for case ascertainment, whereas traditional non-communicable disease registries (e.g. cancer) largely depend upon state laws that mandate healthcare providers to identify cases. Making ALS a reportable disease would greatly increase the research and care of those living with ALS.

• New Jersey 3269 Provides that consistent with federal and State privacy laws, the Department of Health is to require healthcare facilities to confidentially report to the department all known and suspected cases of amyotrophic lateral sclerosis in a manner to be specified by the department.  The department is to record and compile information received pursuant to the bill’s provisions for research purposes only.

• New Jersey 1182/A. 1811 Requires continued coverage of prescription drugs for certain medical conditions.
• New York 836 Provides for patient prescription pricing transparency; requires certain insurers or pharmacy benefit managers to furnish required cost, benefit, and coverage data upon request of the insured, the insured's health care provider, or an authorized third party. Signed by Governor 3/3/2023.

As more genes are identified and linked to ALS, people living with ALS and their families should have access to genetic testing and counseling and be protected from discrimination based on their genetic information.

• New York A2083, would prohibit discriminatory coverage and pricing decisions based on genetic testing in life, accident, health, disability, long-term care, or medical indemnity insurance. ALS United Greater New York submitted a Memo of Support.
• New York S. 1208 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; provides insurers cannot require access to genetic testing results and cannot take adverse action against someone for not providing genetic testing results. ALS United signed a Memo of Support.

There are currently no biomarker tests on the market for ALS. However, a tremendous amount of research is being done in this area. Inevitably, there will be biomarkers identified and tests available for ALS in the future, so making sure states have policies on the books to ensure coverage and access to biomarker testing while also protecting against discrimination related to that testing is important for people living with ALS.

• New York A1673/ S1196, requires health insurance policies and Medicaid to cover biomarker testing for diagnosis, treatment, appropriate management, or ongoing monitoring of a covered person's disease or condition when the test is supported by medical and scientific evidence. The Governor signed this into law on December 22, 2023.

Medicare supplemental insurance policies, also known as "Medigap," are sold by private insurance companies that aim to fill the gap in original Medicare for eligible enrollees living with high-cost conditions like ALS. However, under current law in many states, individuals under the age of 65 living with ALS cannot buy Medigap plans at a price they can afford due to the absence of state policy. New Jersey must ensure that private insurers offer plans to people living with ALS under the age of 65 and that those plans are affordable.

• New Jersey 1162 Provides guaranteed issue rights to certain applicants for Medicare supplement insurance policies.