State Representative Joseph D. McKenna (R-Webster) is proud
to announce that he has been appointed by House Minority Leader Bradley H.
Jones, Jr. (R-North Reading) to serve on the
Massachusetts Rare DiseaseAdvisory Council.
McKenna is replacing State Representative Hannah Kane
(R-Shrewsbury), who previously served on the Advisory Council but has reached
the end of her three-year term.
The 29-member Advisory Council is responsible for advising
the Governor, the Legislature and the Department of Public Health on the
incidence of rare disease in Massachusetts, which is defined in state law as any
condition that “affects fewer than 200,000 people in the United States, has
status as an orphan disease for research purposes, or is known to be
substantially under diagnosed and unrecognized as a result of lack of adequate
diagnostic and research information.”
Although it was created as part of a 2021 omnibus healthcare reform bill known as An Act promoting a resilient health care system
that puts patients first, the initial proposal to establish a Rare Disease
Advisory Council was filed as a stand-alone bill in 2019 with McKenna and Kane
as the lead co-sponsors.
“Joe has been at the forefront of advocating for the rights
of individuals with rare diseases to ensure that they have access to
appropriate health care, and he has continued to promote additional research
and the development of effective diagnosis and treatment options for
individuals living with rare medical conditions,” said Representative Jones.
“Joe’s knowledge and passion for these issues will help provide a seamless
transition for the Advisory Council as it continues its important work to
assist this previously underserved population.”
In addition to developing and maintaining a comprehensive
rare disease plan for the Commonwealth, the Advisory Council is also required
to file an annual report by December 31.
“Though my lived experience as a member of a family with an
extensive history of Hemophilia, a rare bleeding disorder that claimed the life
of my father while also impacting two cousins and a nephew, I know and
understand the daily challenges that patients, family members, caregivers, and
care providers in the rare disease community face,” said Representative
McKenna. “I am passionate about helping to elevate the voice of this incredible
community and I am so excited to join many talented and passionate individuals
to continue this mission as a member of the Council.”
McKenna was first elected to the Massachusetts
House of Representatives in 2014, after previously serving for three years as
Chief of Staff to former State Representative Peter Durant (R-Spencer), who was
recently elected to the Senate in a special election. In addition to serving as
the Ranking Minority Member of both the Joint Committee on Consumer Protection
and Professional Licensure and the House Committee on Human Resources and
Employee Engagement, McKenna is also a member of the House Committee on Post
Audit and Oversight, the House and Joint Committees on Ways and Means, and the Joint
Committee on Economic Development and Emerging Technologies.
McKenna represents the Eighteenth
Worcester District, which includes the towns of Webster;
Sutton; Douglas; Precincts 1 and 4 in Oxford; and Precinct 1 in Uxbridge.