The bill is sponsored by Representatives Hannah Kane and Joseph McKenna and once enacted establishes a Rare Disease Advisory Council in the Commonwealth.
The mission of the council is to advise the Governor, General Court, and Department of Public Health on the incidence of rare disease in the Commonwealth and the status of rare disease in Massachusetts.
The advisory council will develop and maintain a rare disease plan for the Commonwealth to achieve the council’s mission.
Make-up and Administration of the Rare Disease Advisory Council:
- 27 total members
- 2 Senators and 2 Representatives (or designees)
- Massachusetts Healthy Policy Commission Director (or designee)
- 21 appointees of the Governor each with a background and expertise in rare disease, including representatives from: academic research institutions, physicians and nurses, hospital administrators, rare disease pediatric hospitals, rare disease advocacy organizations, health plan or accountable care organizations, biotechnology, pharmacists, genetic counselors, rehabilitation facilities for rare disease, rare disease patients and caregivers for rare disease patients
- Council will meet at least quarterly
- Council members shall serve 3 year terms and until their replacement is appointed
Duties of the Rare Disease Advisory Council:
- Coordinate with other rare disease advisory bodies and organizations to ensure greater cooperation regarding the research, diagnosing and treatment of rare diseases
- When appropriate, the council shall share and publish research, identified best practices and policy recommendations
- Develop a profile of the social and economic burden of rare disease in the Commonwealth by examining the causes and prevalence of rare disease
- Publicize the profile to ensure knowledge of effective strategies for treatment and care
- Determine the human impact and economic implications of early treatment of rare diseases
- Evaluate the current system of rare disease treatment to determine recommendations to increase survival rates, improve quality of life and prevent and control risk of co-morbidities for rare disease
- Determine most appropriate method for the Commonwealth to collect rare disease data
- Study the feasibility of establishing a rare disease information and patient support network
- Develop and maintain a comprehensive rare disease plan for the Commonwealth
Legislation’s Impact: This bill seeks to educate individuals and draw attention to rare disease in the Commonwealth. The legislation gathers experts and stakeholders from various subsections of the rare disease community to develop a collective rare disease network. The bill creates a comprehensive rare disease plan to use as a framework for championing the rare disease community and making strides in tackling rare disease here in Massachusetts.
Rep Kane's story
Rep McKenna's story
Reps Kane and McKenna share about H.4268
HB. 4268 Sponsors
Name: District/Address:
Hannah Kane 11th Worcester
Joseph D. McKenna 18th Worcester
Brian M. Ashe 2nd Hampden
Julian Cyr Cape and Islands
Shawn Dooley 9th Norfolk
Kimberly N. Ferguson 1st Worcester
Carole A. Fiola 6th Bristol
Colleen M. Garry 36th Middlesex
Anne M. Gobi Worcester, Hampden, Hampshire and Middlesex
Jonathan Hecht 29th Middlesex
Bradley H. Jones, Jr. 20th Middlesex
David Henry Argosky LeBoeuf 17th Worcester
Paul McMurtry 11th Norfolk
Michael O. Moore Second Worcester
Mathew J. Muratore 1st Plymouth
Elizabeth A. Poirier 14th Bristol
David M. Rogers 24th Middlesex
Paul A. Schmid, III 8th Bristol
Timothy R. Whelan 1st Barnstable
Rep McKenna sharing about the MA Rare Disease bill submission potential.
The hearing at the MA State House on October 8th, was very successful, thank you to everyone who came out to support H.4268!
MA Representative Joseph McKenna providing testimony during the hearing.
Check out some of the testimonials given by RNE supporters during the hearing.
URGENT: This bill is sitting in the House Ways and Means with a deadline of July 31st.
NOW IS THE TIME TO ACT!
Click "Email Me" to automatically send message to Chair Aaron Michlewitz (Aaron.Michlewitz@mahouse.gov)
Copy and paste note into body with subject line "H.4268".
“I am a Massachusetts constituent who feels strongly about the health of rare disease patients and their families, especially during this unprecedented health crisis, the COVID-19 pandemic. I request that H.4268 be favorably reported out of the House Ways and Means by the reporting deadline of July 31st.
H.4268 is active at the Massachusetts State House and promotes the establishment of a Rare Disease Advisory Council in the Commonwealth”.
Thank you for your time,
(Add your full name and City, State)
To E-mail Aaron Michlewitz
