Healthcare Legislation Efforts
Legislative efforts are imperative in creating laws and setting a framework for enforcement. Proper healthcare for all individuals requires strong legislation that paves the way for improved policies.
The rare disease community has many supporters active in legislative efforts through State Representatives, Senators, Congressmen/women, Advocacy organizations, Hospital administrations, Patients and Caregivers, Healthcare workers, Healthcare industry, and more. They initiate bills and promote action steps as bills work through Committees with the goal of passing votes through the House and Senate to become Laws.
Although we are fortunate to have those working for us to build a better health care system, they can not do their job alone; for most positive outcomes, our help is needed to spread awareness of the plight of the rare community and the need to pass legislation as swiftly as possible. (For current rare disease policy issues and Action Alerts, scroll down to learn more about National Organization for Rare Disorders and Rare Disease Legislative Advocates and these organization's efforts to assist the rare disease community).
There is a lot we can do to aid legislative efforts and we can begin with acts as simple as making telephone calls and/or sending emails to our own State Representatives and Senators to explain what it is like to live or work with rare disease and ask for their support for bills in play. EVERY call/email counts!
In words of a legislative aide who worked with Congressman Joseph Kennedy, "When we receive a call about an issue we take note. When we begin to receive multiple calls on an issue, we realize we have a problem to solve". YOUR call/email could be the one that makes the difference! Don't hold back; make that call today.
Senate Bill 2984
Enacted December 2020
On December 23rd, 2020 the State House News reported that Senate Bill 2984, An Act promoting a resilient health care system that puts patients first, was enacted by the House of Representatives on a vote of 157-0 on December 23, and by the Senate on a voice vote.
The second amendment to the healthcare bill that Representative Kane filed and secured will create a Rare Disease Advisory Council to advise the Governor, the Legislature, and DPH on the incidence of rare disease in Massachusetts. It defines a rare disease as one 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.” The amendment was based on a bill (H4268) Representative Kane co-sponsored this session alongside Representative Joe McKenna.
Origins
RNE has been collaborating with MA State Representative Paul Heroux since 2015 as he considered submitting a bill to establish a Rare Disease Advisory Council in Massachusetts. Rep Heroux has championed a bill originally known as HB.3714, "An Act to Create a Rare Disease Advisory Council" and has been a fabulous supporter of healthcare needs for the rare disease community. Paul is now Mayor of Attleboro, MA.
May 14th Advocacy Day
RNE and NORD partnered with Representatives Kane and McKenna, and Senator Feeney to hold a legislative briefing on May 14th, 2019 at the MA State House! We had a great agenda in the AM and attendees visited legislators following the talks.
H.4268, SD.2264, "An Act to Create a Massachusetts Rare Disease Advisory Council" will allow rare disease patients, caregivers, families, and others involved with rare disease an opportunity to have a say in how the state improves public policy for our community.
Thank you for showing your support for legislative efforts to benefit the rare disease community!
Your support makes our legislative efforts possible. Help us keep fighting for the rights and acknowledgement of those affected by rare diseases.
Media
October 8th MA State House Hearing
Our hearing at the MA State House was very successful, thank you to everyone who came out to support H.4268!
Paul Heroux speaks to the RNE Volunteer Team
Paul shared insight about how to help get a bill passed through Committees.
Public Health Committee for HB.3714
Hearing at the Public Health Committee for HB.3714 that took place on June 27, 2017