Findings

Congress makes the following findings: (1) Amyotrophic lateral sclerosis (in this section, referred to as ALS) is a progressive and debilitating neurodegenerative disease. (2) Key services that include (but are not limited to) providing specialized physician or nurse practitioner support, occupational therapy support, speech pathology support, physical therapy, dietary support, respiratory support, registered nurse support, and coordination of the furnishing of durable medical equipment are crucial for managing the complex medical needs of ALS patients. (3) Studies have shown ALS clinics that provide these key services to ALS patients extend these patients’ lifespans and improve the quality of their lives. (4) These key services are furnished by a range of healthcare professionals. (5) Facilities providing care to ALS patients currently face inadequate Medicare reimbursement for the key services they offer to these patients. (6) Insufficient reimbursement creates significant challenges for facilities specializing in ALS care, resulting in extended wait times for patients in need of crucial services and hampering the ability of these facilities to innovate and improve the quality of care provided to ALS patients. (7) Improved reimbursement rates would encourage facilities to invest in research, innovation, and technology, leading to enhanced treatment options for ALS and improved patient outcomes. (8) Remote medical management options for individuals suffering from ALS must be a crucial part of access to care for such individuals, especially those living in rural areas or care deserts. (9) Telehealth is an essential management option referred to in paragraph (8) and can assist in delivering timely and comprehensive care, as ALS patients living in rural areas or care deserts often face challenges in accessing specialized ALS care and could otherwise be required to travel long distances—often with caregivers or family members. (10) Telehealth is especially important in maintaining access to care for ALS patients as the disease progresses and ALS patients have more limited mobility, which may make it challenging to attend in-person appointments regularly. (11) Low funding and difficulty in staffing for ALS clinical trials delay the development and availability of potential treatments and therapies for individuals living with the disease. (12) Inadequate funding for ALS clinical trials also impedes the ability to attract and retain qualified researchers, clinicians, and support staff, limiting the overall progress and success of these trials.