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 had 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 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. Paul is now Mayor of Attleboro, MA.

H.1934             SD2264​

A Massachusetts Legislative Effort To Benefit Rare Disease Patients

The National Institute of Health (NIH) estimates there to be 30 million Americans diagnosed with a rare disease. With statistics showing 1/10 people are diagnosed with a rare disorder, this estimates 690,000 Massachusetts residents are living with at least one of the approximately 7000 discovered rare diseases. Cures do not exist for rare diseases and only 5% have FDA-approved treatments.

Patients and families living with rare diseases face many challenges, including finding accessible medical care, affording available treatments, obtaining appropriate educational opportunities, and having basic needs met in everyday life. 

There is a severe deficit of awareness regarding rare diseases and their implications throughout the country, and within the Commonwealth, creating negative ramifications on rare disease patients and those caring for them. Not only is the rare disease community severely burdened by this lack of awareness and support, but often this results in harm or even death to patients.

This bill if enacted will enable a group of expert stakeholders from the rare disease community, including geneticists, genetic counselors, legislators, patients, caregivers, patient advocacy groups, school representatives, hospital administrations, industry, and more, to gather and share perspectives, and discuss opportunities to find solutions to increase quality of lives for all affected by rare disorders.

The potential for such a rare disease advisory council include:
  • Coordinating statewide efforts for benefit of those affected by rare diseases
  • Consisting of several reps of pertinent medical specialties, rare disease groups and organizations
  • Examining incidence and cause of rare disease
  • Developing profile of social and economic burden of rare disease
  • Developing methods to publicize the profile of social and economic burden of rare disease
  • Considering 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.
  • Identifying research-based strategies to prevent and control risks of co-morbidity for rare disease
  • Determining the impact that delayed or inappropriate treatment of rare disease has on patient’s lives and economic burden on both patients and the Commonwealth.
  • Studying the economic burden in regard to quality of care, insurance reimbursement, and rehabilitation.
  • Developing ways to ensure that the public and health care providers are informed in recognizing and treating rare disease
  • Evaluating current rare disease treatment for purpose to raise potential of increasing rare disease survival rates and improving quality of life
  • Identifying best practices for rare disease care by other states and at national level
  • Proposing structure for developing a patient support network
  • Identifying sources of funding to improve rare disease care
  • Developing and maintaining 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.

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

Town, State, Zip

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

Chairman xxx, Chairman xxx, 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……………………………………………..

Offer thanks ...

*Whole Address

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. 
Just a few include:

S.686, "An Act To Protect Medically Fragile Kids"

S.1235, "An Act relative to step therapy and patient safety"

HB 1934 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

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.
MA State Representative             Joseph McKenna
MA State Representative Hannah Kane
"An Act to Create a Rare Disease Advisory Council"
Meet MA State Representatives Hannah Kane and Joseph McKenna, 
sponsors of House Bill 1934
Hear Rep Joseph McKenna share his story and talk about the bill in MA to create a rare disease advisory council.
"Legislative Tips 101" shared by Lisa Deck at our 2018 
fall conference.
RNE and NORD are partnered with Reps Kane and McKenna and Sen Feeney to hold a legislative briefing on May 14th at the MA State House! We had a great agenda (below) in the AM and attendees visited legislators following the talks.

H 1934, SD2264, "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!

The Legislative Briefing on May 14, 2019 went wonderfully, thank you to everyone who attended! Check out photos from the event here.
The May 14th Advocacy Day at the Massachusetts State House was a huge success! Our expert speakers shared why "An Act to Create a Massachusetts Rare Disease Advisory Council" is so important to the rare disease community and what the bill entails. See photos from the event below.
For a view on Congressman Joseph Kennedy's acknowledgement and perspective on needs in the rare disease community that need addressing by US Congress, click here.

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.