Healthcare Legislation
​Legislative efforts are imperative in creating laws and setting 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 goal of passing votes through 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.


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 now known as HB3714, "An Act to Create a Rare Disease Advisory Council" and has been a fabulous supporter of healthcare needs for the rare disease community.
HB3714, "An Act to Create a Rare Disease Advisory Council"

This bill would;
Coordinate statewide efforts for benefit of those affected by rare disease, DPH guided
Consisting of several reps of pertinent medical specialties, rare disease groups and organizations
Examine incidence and cause of rare disease
Develop profile of social and economic burden of rare disease
Develop methods to publicize the profile of social and economic burden of rare disease
Consider reports from those affected by rare disease, including individuals, health care providers, and public and private organizations to learn possibilities for improvement for rare disease care.
Identify research-based strategies to prevent and control risks of co-morbidity for rare disease
Determine the impact that delayed or inappropriate treatment of rare disease has on patient’s lives and economic burden on both patients and the Commonwealth.
Study the economic burden in regard to quality of care, insurance reimbursement, and rehabilitation.
Develop ways to ensure that the public and health care providers are informed in recognizing and treating rare disease
Evaluate current rare disease treatment for purpose to raise potential of increasing rare disease survival rates and improving quality of life
Research and determine most appropriate way to collect rare disease data
Identify best practices for rare disease care by other states and at national level
Propose structure for developing a patient support network
Identify sources of funding to improve rare disease care
Develop and maintain a comprehensive rare disease plan for the commonwealth, including providing materials to be utilized


Hearing in the Public Health Committee for HB3714 took place on
 June 27, 2017 
Click on picture to watch testimonies.

RNE has been listening to feedback from the rare disease community and based on suggestions, has requested the following amendments to this bill:

(b)(1) Change language from specific specialties named to up to 15. (This change is reflection on CT’s Task Force delay in forming due to securing appropriate parties.
Remove specific named organizations and replace with up to 4 representatives from patient-based organizations that operate within the State. (This will allow fair representation).

(b) (2) Until such time that each vacancy can be appropriately filled, council may presume with at least 5 appointed representatives. (This will allow the Council to get started as they search for appropriate candidates)
Add: Upon or after the Advisory Council is first convened, the council may advise the Commissioner on additional at-large appointments to the council that may be necessary to carry out its duties. At-large appointments to the council may serve on an ad-hoc basis.

(12) Remove “Develop a registry of all rare diseases diagnosed within the commonwealth to aid in determining any genetic or environmental contributors to rare diseases” and substitute with a plan to share data such as, “Coordinate the performance of the council’s duties with other state rare disease advisory bodies, community-based organizations, and other public and private organizations for the purpose of ensuring greater cooperation between state and federal activities regarding the research, diagnosis, and treatment of rare diseases. Federal agencies may include, but are not exclusive to, the U.S. National Institutes of Health NIH), and the U.S. Food and Drug Administration (FDA). Such coordination shall require, when appropriate:
i. disseminating the council’s research, identified best practices, and policy recommendations; and
ii. the utilization of common research collection and dissemination procedures.

How can you help, you ask?
  • Contact your State Representative and Senator and share your story of living and/or working with rare disease. Explain why you feel this bill will be beneficial and ask for support.
  • Send in a letter of written testimony .
  • You can plan to provide oral testimony at the next hearing or attend to show support for those who do and stand up for the bill itself.

Find your MA Representative​ here

Find your Senator here

Sample letter of testimony:

Testimony for Public Hearing
Public Health Committee
(Date)

Name
Address
Town, State, Zip

HB3714, An Act to Create a Rare Disease Advisory Council. 

Chairman Lewis, Chairman Hogan, Members of the Public Health Committee, 

(Brief ask for support on this bill and why such a Council would be instrumental in determining solutions for RD stakeholders in the Commonwealth).

(Brief Own story) (Think 2 minute talk for whole document) xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx……………………………………………..

IF in agreement with proposed language changes,
Add: I request consideration for the following ammendments to the Bill as written:
(b)(1) Change language from specific specialties named to up to 15. (This change is reflection on CT’s Task Force delay in forming due to securing appropriate parties.
Remove specific named organizations and replace with up to 4 representatives from patient-based organizations that operate within the State. (This will allow fair representation).
 (b) (2) Until such time that each vacancy can be appropriately filled, council may presume with at least 5 appointed representatives. (This will allow the Council to get started as they search for appropriate candidates)
Add: Upon or after the Advisory Council is first convened, the council may advise the Commissioner on additional at-large appointments to the council that may be necessary to carry out its duties. At-large appointments to the council may serve on an ad-hoc basis.
(12) Remove “Develop a registry of all rare diseases diagnosed within the commonwealth to aid in determining any genetic or environmental contributors to rare diseases” and substitute with a plan to share data such as, “Coordinate the performance of the council’s duties with other state rare disease advisory bodies, community-based organizations, and other public and private organizations for the purpose of ensuring greater cooperation between state and federal activities regarding the research, diagnosis, and treatment of rare diseases. Federal agencies may include, but are not exclusive to, the U.S. National Institutes of Health NIH), and the U.S. Food and Drug Administration (FDA). Such coordination shall require, when appropriate:
i. disseminating the council’s research, identified best practices, and policy recommendations; and
ii. the utilization of common research collection and dissemination procedures.

Offer thanks ...

Salutation,
*Name
*Whole Address
*Phone
*Email

There are many other bills being considered in Massachusetts, other New England and across the country with purpose to produce better outcomes for the rare disease community. 

 The rare disease community is fortunate to have strong backers and those willing to use their voice and work for Legislative changes but they need all of us to help them do their work by supporting their efforts and acting when they distribute Action Alerts.

HB3714 Sponsors

Paul R. Heroux 2nd Bristol
William N. Brownsberger Second Suffolk and Middlesex
Thomas J. Calter 12th Plymouth
James M. Cantwell 4th Plymouth
Edward F. Coppinger 10th Suffolk
Josh S. Cutler 6th Plymouth
Marjorie C. Decker 25th Middlesex
Geoff Diehl 7th Plymouth
Shawn Dooley 9th Norfolk
Carole A. Fiola 6th Bristol
Colleen M. Garry 36th Middlesex
Carlos Gonzalez 10th Hampden
Jonathan Hecht 29th Middlesex
Hannah Kane 11th Worcester
Joseph D. McKenna 18th Worcester
Michael O. Moore Second Worcester
Mathew Muratore 1st Plymouth
Shaunna L. O'Connell 3rd Bristol
Michael J. Rodrigues First Bristol and Plymouth
David M. Rogers 24th Middlesex
Richard J. Ross Norfolk, Bristol and Middlesex
Alan Silvia 7th Bristol
Brian M. Ashe 2nd Hampden
Ruth B. Balser 12th Middlesex





National Organization for Rare Disorders (NORD) 
"For more than 30 years, NORD has led the way in voicing the needs of the rare disease community, driving supportive policies, advancing medical research, and providing patient and family services for those who need them most. NORD works closely with advocacy partners on the federal and state level to encourage policies that are supportive of the needs of rare disease patients and their families". 

NORD RareAction Network (RAN)
"The Rare Action Network℠ (RAN) is the nation’s leading advocacy network working to improve the lives of the 30 million Americans living with a rare disease at the state level. RAN serves as a broad spectrum of stakeholders ranging from patients, to their families, caregivers, and friends; from researchers to industry; to physicians and academia. While working predominantly at the state level, the network will filter information up to NORD’s national federal policy team to help address issues of national concern".

State Policy Legislative Tracker 
NORD Rare Action Network tracks state-by-state legislative efforts aimed for improving lives in the rare disease community and has supplied a document outlining these efforts for anyone to review.

State Report Card
NORD’s State Report Card serves as an evaluation of state policies pertinent to the rare disease community. It includes key policy issues such a Medical Foods, Newborn Screening State Medicaid and more.










Rare Disease Legislative Advocates (RDLA) 
A program of the EveryLife Foundation, serves as a legislative advocacy center with many free resources for individual advocates and rare disease advocacy organizations. RDLA is a clearinghouse of ideas that is open to all members of the rare disease community with an interest in sharing information around common causes and advocating for the introduction or enactment of legislation.

EveryLife Foundation for Rare Diseases 
A 501(c)(3) nonprofit dedicated to accelerating biotech innovation for rare disease treatments through science-driven public policy. It works with patient organizations, industry, academic scientists, the Food and Drug Administration (FDA), and National Institutes of Health (NIH) to improve the clinical development process through the Rare Disease Workshop series, Rare Disease Legislative Advocates (RDLA) initiative, and legislation at the state and federal levels

MA State Representative Paul Heroux speaks to the RNE Volunteer Team, sharing insight about how to help get a bill passed through Committees.