Bill would create state committee to review rare diseases

By: - February 20, 2020 6:15 pm

The Michigan House Health Policy Committee met Thursday to discuss two bills introduced earlier this month by Chair Hank Vaupel (R-Fowlerville) regarding mental health and rare diseases in Michigan.

House Bill 5465 would create a new act establishing a rare disease review committee within the Department of Health and Human Services (DHHS).

The committee would be tasked with creating a list of rare diseases on DHHS’ website, and it would be reviewed and updated every two years. The panel would select one rare disease for further study each year.

Rep. Hank Vaupel

As of now, there are only six diseases listed on the bill, which include spinal bifida, Krabbe disease, cystic fibrosis, a pediatric autoimmune neuropsychiatric disorder if the disorder is considered a rare disease, long QT syndrome and cytomegalovirus.

The committee would be made up of two members representing DHHS, a medical or osteopathic doctor, one person from a list submitted by the Senate majority leader, one person from a list submitted by the House speaker, a registered professional nurse, a licensed social worker and two members of the public. 

The bill calls for Gov. Gretchen Whitmer to appoint members by Jan. 1, 2021.

Heidi Ross with the National Organization for Rare Diseases (NORD) supports the bill. Ross said there are more than 7,000 rare diseases, and that NORD represents them.

She added that 11 states have already passed a bill regarding rare diseases, but there is a need to create a Michigan-specific committee to provide people with resources and information about their condition.

Gabe Basso, a lobbyist with health insurer Blue Cross Blue Shield of Michigan, said that the organization supports the concept and intent of HB 5465, but small changes needed to be made, such as removing the six diseases already listed on the bill, arguing that one disease is not more important than another.

He also suggested that additional seats be added to the committee, including a health maintenance organization (HMO) and a health insurer. Basso said he hoped the committee’s findings and recommendations will be based off of medical and scientific data.

The Alexander Graham Bell Association for the Deaf and Hard of Hearing supports the bill and does not want Cytomegalovirus (CMV) taken off the list of rare diseases.

The other bill, House Bill 5178, aims to make some changes to the Mental Health Code and would require DHHS to establish, maintain, and revise a uniform community mental health services credentialing program state department or agency use. 

In addition, the credentialing and re-credentialing process would have to comply with national standards. The bill also calls for DHHS to streamline the process of providing community mental health (CMH) services, comply with national certification standards for CMH counselors and professionals and meet the needs of the populations served. 

If the bill is signed into law, it would require DHHS to submit a report every six months to describe its progress and completion of the news steps.

Mental health hotline bill goes to gov.

The bill also calls for physicians, physician’s assistants, social workers, licensed professional counselors, limited license social workers, social service technicians, nurses, occupational therapists and their assistants, physical therapists and physical therapist assistants and speech language pathologists to document that they have received their credentials or that they have renewed them.

The committee voted to adopt a substitution for the bill on Thursday, and Vice Chair Ben Frederick (R-Owosso) said the bill would be sent to the Ways and Means Committee to vote on it, the next step before it goes before the full House.

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Madeline Ciak
Madeline Ciak

Madeline Ciak is a former Michigan Advance reporter. She’s a University of Michigan-Flint graduate and previously worked as a digital media manager at NBC25/FOX66 in Flint and a weekend producer at ABC12.