Bill Text: NJ A5501 | 2026-2027 | Regular Session | Introduced
Bill Title: Establishes "Tom's Friends with ALS Bill of Rights" Act.
Sponsorship: Partisan Bill (Democrat 1)
Status: (Introduced) 2026-09-14 - Introduced, Referred to Assembly Health Committee [A5501 Detail]
Download: New_Jersey-2026-A5501-Introduced.html
Sponsored by:
Assemblywoman CAROL A. MURPHY
District 7 (Burlington)
SYNOPSIS
Establishes "Tom's Friends with ALS Bill of Rights" Act.
CURRENT VERSION OF TEXT
As introduced.
An Act concerning amyotrophic lateral sclerosis and other motor neuron diseases and supplementing Title 26 of the Revised Statutes and chapter 9 of Title 45 of the Revised Statutes.
Be It Enacted by the Senate and General Assembly of the State of New Jersey:
1. This act shall be known and may be cited as the "Tom's Friends with ALS Bill of Rights."
2. The Legislature finds and declares that patients with amyotrophic lateral sclerosis (ALS) or other motor neuron diseases, including, but not limited to, progressive bulbar palsy, primary lateral sclerosis, and progressive muscular atrophy, receiving palliative care, comfort care, or hospice care services have a fundamental right to receive quality care and comfort and nothing shall infringe upon that right.
3. a. Every person with ALS or other motor neuron diseases in this State shall have the right to receive equitable hygiene and health care services in their home, including, but not limited to, a podiatrist, manicurist, or pedicurist for personal nail care and hygiene, and to a barber for personal hair care and hygiene.
b. Persons with ALS or other motor neuron diseases shall have the right to receive therapy services in the home. Therapists choosing to provide such in-home services shall not be required to apply for any additional licensure to provide services the therapist would otherwise provide in a non-home setting.
c. (1) Notwithstanding any law, rule, or regulation to the contrary, prior authorization shall not be required for the provision of durable medical equipment for patients with ALS or other motor neuron diseases, including, but not limited to, non-invasive ventilators, cough assist machines, and suction machines. A public or private insurance carrier operating in this State shall be prohibited from enforcing such prior authorization provisions against such patients.
(2) Notwithstanding any law, rule, or regulation to the contrary, prior authorization shall not be required for the provision of liquid medications for patients with ALS or other motor neuron diseases, and a public or private insurance carrier operating in this State shall be prohibited from enforcing such provisions against such patients.
d. (1) A person with ALS or other motor neuron diseases receiving palliative, comfort, or hospice care services shall be allowed continued use of all durable medical equipment while in such care. Such person shall not be denied access to durable medical equipment that was previously provided prior to receiving palliative, comfort, or hospice care.
(2) A person with ALS or other motor neuron diseases receiving palliative, comfort, or hospice care services shall be allowed continued use of speech therapy services. Such person shall not be denied access to speech therapy services that were previously provided prior to receiving palliative, comfort, or hospice care.
e. (1) The Department of Health shall provide free, yearly training for nurses, physical therapists, doctors, occupational therapists, and respiratory therapists on the changing needs of patients with ALS or other motor neuron diseases. Such training may be used to fulfill continuing medical education requirements, if needed. This training shall be required for nurses, physical therapists, doctors, occupational therapists, and respiratory therapists who work with ALS patients or patients with other motor neuron diseases.
(2) Within 120 days of the effective date of this act, the Department of Health shall create a continuing medical education compliant training for health care workers on the changing needs of patients with ALS or other motor neuron diseases.
(3) Emergency room physicians shall be knowledgeable on best practices as developed by the American Academy of Neurology for patients with ALS or other motor neuron diseases to promote comfort care during emergency visits.
f. A patient with ALS or other motor neuron diseases shall not be denied a request for an inpatient bed. Such bed shall be made available as soon as practicably possible or a transfer to a facility with an open inpatient bed shall be made.
g. As used in this section, "motor neuron diseases" means a group of progressive neurological conditions that destroy motor neurons, which are the cells that control skeletal muscle activity such as walking, breathing, speaking, and swallowing; and include amyotrophic lateral sclerosis, progressive bulbar palsy, primary lateral sclerosis, progressive muscular atrophy, spinal muscular atrophy, Kennedy's disease, and post-polio syndrome.
4. An emergency room physician shall be required to complete yearly the training created pursuant to paragraph (2) of subsection e. of section 3 of this act.
5. a. The Commissioner of Human Services shall apply for such State plan amendments or waivers as may be necessary to implement the provisions of this act and to secure federal financial participation for State Medicaid expenditures under the federal Medicaid program.
b. If federal waivers are not received, the State shall not be required to implement the provisions of section 3 of this act to the State's Medicaid programs.
6. This act shall take
effect immediately.
STATEMENT
This bill creates a bill of rights for those with ALS called "Tom's Friends with ALS Bill of Rights."
The bill provides that every person with ALS or other motor neuron diseases shall have the right to equitable health and hygiene care services in their home. This includes access to a podiatrist, manicurist, or pedicurist for personal nail care services and access to a barber for personal hair care services. The bill also provides for the patient to be able to access other health care services such as therapy and speech therapy while receiving palliative, hospice, or comfort care services. Additionally, a person with ALS or other motor neuron diseases would be allowed continued access to all durable medical equipment the patient was using prior to accessing palliative, comfort, or hospice care. This bill would also eliminate the requirement for prior authorization for liquid medications and durable medical equipment for patients with ALS or other motor neuron diseases.
The bill also requires the Department of Health to develop a yearly training to be made available to health care providers working with patients with ALS or other motor neuron diseases on the changing needs of such patients. The training would be required to be compliant with continuing medical education requirements, and emergency room doctors would be required to complete the training yearly. The training would also be required for other health care workers providing care to patients with ALS and other motor neuron diseases.
The bill defines "motor neuron diseases" to mean a group of progressive neurological conditions that destroy motor neurons, which are the cells that control skeletal muscle activity such as walking, breathing, speaking, and swallowing; and include amyotrophic lateral sclerosis, progressive bulbar palsy, primary lateral sclerosis, progressive muscular atrophy, spinal muscular atrophy, Kennedy's disease, and post-polio syndrome.
