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50-State Policy Intelligence | Kisho | Kisho
Policy Intelligence
50-State Policy Intelligence for Rare Disease Advocacy
Every bill AI-classified by advocacy category, scored for rare disease impact, and linked to the diseases it affects. 1,906 bills tracked across 50 states and Congress.
Sourced from LegiScan + OpenStates · Updated daily
This week, significant federal developments in rare disease policy include the introduction of the Stop CMV Act of 2025 (SB2842 and HB5435), which mandates congenital Cytomegalovirus screening for newborns to enhance early detection and intervention. Additionally, the Newborn Screening Saves Lives Reauthorization Act of 2025 (HB4709) aims to reauthorize essential programs for genetic disease screening, while the HEARD Act of 2025 (HB1750) focuses on increasing research funding for rare diseases affecting minority populations. Lastly, the Doctor Knows Best Act of 2025 (HB639) seeks to eliminate prior authorization requirements, improving access to treatments for rare disease patients.
AI-generatedWeek of Jun 15, 20265 bills analyzed
State-Level Highlights
This week, significant rare disease policy developments emerged across several states. North Carolina introduced H1166 to reorganize and fund its Rare Disease Advisory Council, while Maryland's HB1625, HB1537, and HB1055 aim to enhance newborn screening for various conditions, including metachromatic leukodystrophy and Gaucher disease. California's AB1887 mandates expedited drug coverage for rare diseases, and New York's S01287 establishes a Rare Disease Advisory Council to improve access to care. Additionally, Florida's H1335 and S1574 propose mandatory screenings for biliary atresia in newborns, enhancing early detection efforts.
S4629 amends New Jersey's telehealth and telemedicine laws to facilitate the prescription of Schedule II drugs to certain patients, potentially improving access for those with rare diseases requiring such medications. This change aims to enhance the flexibility of telehealth services, which can be crucial for patients with limited access to specialized care.
A5062 mandates health insurance and Medicaid to cover testing and treatments aimed at slowing the progression of Alzheimer's disease and related disorders. This legislation could improve access to necessary therapies for patients, although its direct impact on rare diseases may be limited.
S4194 allows for the prescription of Schedule II controlled substances through telemedicine without the need for an in-person examination. This change could improve access to necessary medications for rare disease patients who may have difficulty attending in-person appointments.
A4957 authorizes the prescription of Schedule II controlled substances via telemedicine, eliminating certain in-person requirements. This change could improve access to necessary medications for rare disease patients who may have difficulty attending in-person appointments.
A4931 mandates the Department of Human Services to provide guidance on housing-related services for Medicaid beneficiaries, which could improve access to stable housing for individuals with rare diseases. This guidance may help address the unique needs of patients requiring specialized care and support.
S4073 mandates health insurance and Medicaid coverage for testing and treatments aimed at slowing the progression of Alzheimer's disease and related disorders. This legislation could improve access to necessary therapies for patients, although its direct impact on rare diseases may be limited.
A4852 allows for the prescription of Schedule II controlled substances through telemedicine without requiring an in-person examination. This change could improve access to necessary medications for rare disease patients who may have difficulty attending in-person appointments.
S4023 permits reimbursement for medical cannabis costs through various state funds, potentially easing financial burdens for patients with catastrophic illnesses. This legislation may improve access to alternative treatments for rare disease patients who benefit from medical cannabis.
A4694 mandates that health plans provide coverage for prescription drugs related to serious mental illnesses without the need for prior authorization or step therapy. This change aims to improve access to necessary medications, which could indirectly benefit patients with rare diseases who also experience mental health challenges.
S3947 permanently extends pay parity for telemedicine and telehealth services in New Jersey. This legislation is crucial for ensuring that rare disease patients can access necessary care remotely without financial penalties.
A4550 mandates that health benefits must cover buprenorphine and buprenorphine/naloxone for pain treatment without the use of step therapy or fail-first protocols. This provision is significant for patients requiring immediate access to these medications, potentially benefiting those with rare diseases that involve chronic pain.
S3793 revises the requirements for cash assistance benefits under the Work First New Jersey program, which may impact Medicaid eligibility for rare disease patients seeking financial support. This change could affect access to necessary healthcare services for individuals with rare conditions.
A4485 establishes a minimum Medicaid reimbursement rate for structured day program services for beneficiaries eligible for brain injury services. This policy change aims to improve access to necessary support services for individuals with brain injuries, which may include rare conditions related to neurological disorders.
S3573 aims to regulate the practices of pharmacy benefits managers and health insurance carriers, focusing on step therapy protocols. This legislation is expected to improve access to necessary medications for rare disease patients by streamlining prior authorization processes.
A4327 revises the procedures for processing incomplete Medicaid applications, which could streamline access for rare disease patients needing long-term care services. The bill also exempts asset transfers of up to $500 per month during the look-back period, potentially easing financial barriers for families.
A4244 establishes a Medicaid Managed Care Organization Oversight Program aimed at improving the management and delivery of Medicaid services. This oversight could enhance access to care for rare disease patients relying on Medicaid, although the bill does not specifically mention rare diseases.
A4357 permanently extends pay parity for telemedicine and telehealth services, ensuring that providers are reimbursed at the same rate for virtual visits as in-person consultations. This policy change is crucial for rare disease patients who often require specialized care that may not be locally available.
A4324 mandates the New Jersey Department of Health to maintain an emergency stockpile of insulin and allows for the dispensing of emergency supplies to patients in need. This legislation aims to improve access to insulin for patients, which can be critical for those with diabetes, including rare forms of the disease.
SB 1813 proposes reforms to the step therapy protocols used by state hospitals, potentially improving access to necessary treatments for rare disease patients. While the bill does not specifically mention rare diseases, changes in step therapy can significantly affect patient care and treatment options.
