Michigan Office of Administrative Hearings and Rules

Administrative Rules Division (ARD)

MOAHR-Rules@michigan.gov

AGENCY REPORT TO THE

JOINT COMMITTEE ON ADMINISTRATIVE RULES (JCAR)

AGENCY INFORMATION:

Agency name:

Health and Human Services

Division/Bureau/Office:

Public Health Administration

Name of person completing this form:

Talisa Gauthier

Phone number of person completing this form:

517-241-0048

Email of person completing this form:

gauthiert1@michigan.gov

Name of Department Regulatory Affairs Officer reviewing this form:

Mary Brennan

RULE SET INFORMATION:

MOAHR assigned rule set number:

2022-13 HS

Title of the proposed rule set:

Amyotrophic Lateral Sclerosis (ALS) Reporting

1. Purpose of the proposed rules and background:

These new rules would establish requirements for reporting ALS to the Michigan Department of Health and Human

Services. ALS is a progressive, degenerative, neurological disease. The onset of ALS is typically later in life, peaking

between 50 and 75 years of age. The majority of patients with ALS die within 2-5 years of diagnosis. In general, it is

believed that the ALS incidence is 2/100,000, so assuming a population size in Michigan of 10 million, that is 200 new

cases per year; however, the University of Michigan ALS clinic has been seeing more cases and estimates 300 new

cases per year. It is hard to determine the number of missed cases, especially given the lack of ALS clinics in

Northern Michigan. The state has the authority under the Public Health Code to obtain, upon request, medical records

to investigate, monitor, prevent, and control diseases dangerous to public health. Many of the diseases that are

currently reportable to the state have treatments or known prevention strategies, but ALS patients and families have

nothing that makes any significant difference. All ALS patients eventually die. The cost of the care for one ALS patient

has been estimated at nearly $200,000 per year in some cases, so the prevention of the development of ALS in one

life in Michigan would have an economic impact. These rules would establish a statewide ALS case registry based on

data collection of patients with ALS, identified by neurologists, hospitals, ALS clinics, and vital records. The ALS case

registry would provide data for public health surveillance and provide researchers with standardized and

comprehensive data aimed at identifying risk factors and prevention strategies.

2. Summary of the proposed rules:

These new rules would establish requirements for reporting Amyotrophic Lateral Sclerosis (ALS) to the Michigan

Department of Health and Human Services. ALS is a progressive, degenerative, neurological disease. These rules

would establish a statewide ALS case registry based on data collection of patients with ALS, identified by

neurologists, hospitals, ALS clinics, and vital records. The ALS case registry would provide data for public health

surveillance and provide researchers with standardized and comprehensive data aimed at identifying risk factors and

prevention strategies.

MCL 24.242 and 24.245

Agency Report to JCAR -Page 2

3. List names of newspapers in which the notice of public hearing was published and publication

dates:

Oakland Press, January 28, 2025; Marquette Mining Journal, January 27, 2025; Battle Creek Enquirer, January 27,

2025.

4. Date of publication of the proposed rules and notice of public hearing in the Michigan Register:

2/1/2025

5. Date, time, and location of the public hearing:

2/12/2025 09:00 AM at South Grand Tower Building Room 1I, 333 South Grand Avenue, Lansing, Michigan 48933

6. Provide the link the agency used to post the regulatory impact statement and cost-benefit analysis

on its website:

https://ARS.apps.lara.state.mi.us/Transaction/RFRTransaction?TransactionID=1372

7. List of the name and title of agency representative(s) who attended the public hearing:

Beth Anderson, State Admin Manager, Chronic Disease Epidemiology.

8. Persons submitting comments of support:

Ximena Arcila-Londono, MD Director, Brian Callaghan, MD, MS Director, Multidisciplinary ALS Clinic VA Ann Arbor

Health System; Michelle Crooks, MD Medical Director, Bronson Neuroscience Bronson; Stephen Goutman, MD, MS

Director, Pranger ALS Clinic University of Michigan Medicine; Melanie Taylor, MD Director, Hauenstein

Neurosciences ALS Clinic Trinity Health; Paul Twydell, DO Director, ALS Clinic Neurosciences Integrated Care

Campus-Beltline Corewell Health Medical Group; Sheri Mark-Slaim RN, JD, President, ALS Center of Excellence, U

of M; Michael Ritter, M.D. Managing Director, ALS Center of Excellent, U of M; Doris Allen, Board of Directors, ALS

Center of Excellence, U of M; William Allen, M.D., Board of Directors, ALS Center of Excellence, U of M; Christina

Clark, Board of Directors, ALS Center of Excellence, U of M; Jon Gerych, Board of Directors, ALS Center of

Excellence, U of M; James Hiller, J.D., Board of Directors, ALS Center of Excellence, U of M; Hilary King, Board of

Directors, ALS Center of Excellence, U of M; Clifford Lampe, PHD, Board of Directors, ALS Center of Excellence, U of

M; Paula Morning-Carter, Board of Directors, ALS Center of Excellence, U of M; Scott Pranger, Board of Directors,

ALS Center of Excellence, U of M; Lisa Rosenberg, Board of Directors, ALS Center of Excellence, U of M; Brian Roth,

D.O., Board of Directors, ALS Center of Excellence, U of M; John Scarbrough, Board of Directors, ALS Center of

Excellence, U of M.

9. Persons submitting comments of opposition:

None.

10. Persons submitting other comments:

None.

11. Identify any changes made to the proposed rules based on comments received during the public