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. 2025 Feb 25;104(4):e210015.
doi: 10.1212/WNL.0000000000210015. Epub 2025 Jan 30.

Health Care Delivery and Financial Considerations in Amyotrophic Lateral Sclerosis Clinics: A Survey of Clinic Directors

Ilene L Hollin  1 , Gema Giler  1 , Terry D Heiman-Patterson  1 ; Northeast ALS Consortium Clinical Studies Group  1
Collaborators, Affiliations

Health Care Delivery and Financial Considerations in Amyotrophic Lateral Sclerosis Clinics: A Survey of Clinic Directors

Ilene L Hollin et al. Neurology. .

Abstract

Background and objectives: Clinical care for people living with amyotrophic lateral sclerosis (PLWALS) is directed at slowing disease progression and symptom management. The American Academy of Neurology recommends a multidisciplinary approach to providing ALS health care because observational studies show that multidisciplinary clinics (MDCs) extend survival and improve quality of life. However, providing multidisciplinary care is a challenging financial proposition. To understand how MDCs are financed, we surveyed ALS MDCs across the Northeast ALS Consortium network in the United States.

Methods: We surveyed clinic directors in the Northeast ALS Consortium, a group of institutions equipped to provide ALS care and perform research and clinical trials in ALS. Respondents (n = 61; response rate = 49.6%) provided information regarding their care model, services, funding sources, and financial solvency between December 2020 and August 2021.

Results: In 74% (n = 45) of clinics, PLWALS were seen by the entire multidisciplinary team, and in 26% (n = 16) of clinics, PLWALS were seen by the physician and triaged according to needs. In 79% (n = 48) of clinics, visit duration was ≥3 hours, and on average, 8.4 services were available, compared with 6.8 in clinics lasting <3 hours. Most of the MDCs offer occupational (97%; n = 59), speech (97%; n = 59), and physical (95%; n = 58) therapies on site. The most common source of financial support was third-party nonprofits/philanthropy (92%; n = 56). Fifty-nine percent (n = 36) of clinics received financial support from their parent organizations (e.g., universities). Only 17% (n = 10) of clinics reported no deficit, and all clinics used multiple income sources.

Discussion: These findings reconfirm the range of services available to PLWALS and highlight the financial challenges facing ALS MDCs. The main limitation is that recruitment was through the NEALS network which primarily includes MDCs, so we were not able to compare with non-MDCs. Since not all centers responded, there may be other differences in the characteristics of the centers that did respond and those that did not leading to some bias. Future work should support the goal of reducing reliance on funding from nonprofits and increase reimbursement from payers, so health care providers can provide high-quality ALS care and cover costs.

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Conflict of interest statement

Note that this was unfunded, but some authors reported disclosures in order to be transparent. None were related to the manuscript. T.D. Heiman-Patterson, MD, reports clinic funding from the Muscular Dystrophy Association, a clinical trial readiness grant from the ALS Association, Independent Investigator Funding from MTPA, medical advisory boards at MTPA, Amylyx, Cytokinetics, and Biogen, and clinical trial funding from Amylyx, Healey Trial, Cytokinetics, PKC, and MTPA. J.L. Almodóvar Suárez, MD, reports clinical trial funding from Amylyx. R.S. Bedlack, MD, PhD, MS, reports financial support for the Duke ALS Clinic from the ALS Association. M. Benatar, MD, reports consulting fees from Alector, Annexon, Arrowhead, Biogen, Denali, Novartis, Orphazyme, Roche, Sanofi, and UniQure, and funding from the National Institute of Health and the Muscular Dystrophy Association. G.T. Carter, MD, MS, reports clinical trial funding from Mitsubishi Tanabe Pharma America and Amylyx. L. Elman, MD, reports funding from Biogen, PTC Therapuetics, Apellis Pharmaceuticals, and Edgewise Therapuetics. R. Govindarajan, MD, FAAN, FACP, FANA, FCRP, reports consulting fees from advisory boards for Mitsubishi Tanabe Pharma America and Amylyx. K. Gwathmey, MD, reports speaking/consulting honoraria from Alexion and consulting honoraria for UCB and Argenx. G. Hayat, MD, reports participation on speaking bureaus for MTPA, Argenx, and Alexion, and on the steering committee at Argenx. E.J. Kasrskis, MD, PhD, reports support for the ALS clinic at the University of Kentucky from the ALS Association. M. Pulley reports participation in the medical advisory board for Alexion pharmaceuticals and the clinical trial steering committee for Genentech, and honoraria for regional advisory board participation from UCB, Argenx, and Immunovant. S. Scelsa, MD, reports grant support from Amylyx, A.B. Science, and Sanofi, and has served as a paid consultant for Amylyx. J. Shefner, MD, PhD, reports consulting fees for Amylyx, NeuroSense, Cytokinetics, Denali, GSK, Mitsubishi Tanabe Pharma America, Swanbio, Novartis, Sanofi, PTC Therapeutics, Biogen, and Revalasio, serves as a Neuromuscular Section Editor for UpToDate, and receives research support from NIH, ALS Association, Sean M. Healey, and the AMG Center for ALS Research, Amylyx, Biogen, Biotie Therapies (now Acorda Therapeutics), Cytokinetics, Mitsubishi Tanabe Pharma America, Ionis, Alector, and PTC Therapeutics. M.D. Weiss reports consulting fees for UCB-Ra, Argenx, Alexion, Amylyx, Cytokinetics, CSL-Behring, MT Pharma, and Biogen, speaker fees for Soleo, and is a special government employee for the FDA. The rest of the authors report no disclosures relevant to the manuscript. Go to Neurology.org/N for full disclosures.

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