Monday, February 12, 2024

Representative McKenna Appointed to Massachusetts Rare Disease Advisory Council

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.