From the Desk of the Executive Director: May 2021

May is ALS Awareness Month Collage of Persons Living with ALS from Massachusetts 2021

Welcome to ALS Awareness Month

May serves as our reminder of the positive work being done for the betterment of the Massachusetts’ ALS community. This year is a little more special as our Chapter will fully re-open its care services program. While we will continue to follow CDC and state guidelines, our staff is excited to get back to our families. As COVID continues to recede, the needs of our community demand even more attention.

In other exciting news, we have partnered with the Northern New England Chapter to bring our families two new care services programs – the Newly Diagnosed Program and Caregiver Learning Lab. We will be offering both of these programs periodically throughout the calendar year. For more information, please reach out to your care services coordinator and they will provide details.

Speaking of coming together – last month, I mentioned that our Fall Walks and Ride to Defeat ALS will be in person and the special announcement that we have partnered with the Worcester Red Sox to host our Worcester Walk at Polar Park. We are proud to announce that our Worcester Walk will serve as our virtual Walk option. We understand that some may still be wary of COVID, yet want to be part of our Walk to Defeat ALS. If you would like to Walk Where You Are, please sign up for the Worcester Walk to Defeat ALS and join us on September 26th.

Don’t forget about our Chapter’s 1st Annual CEO Soak in downtown Boston at the Ring Fountain on the Rose Kennedy Greenway on June 10, 2021. The Soak encourages employees to raise funds and watch a company CEO or designated representative get soaked in the heart of the city.

If you, or anyone you know, knows of a company or organization that wants to participate in this exciting new event, learn more by visiting our CEO Soak page.  

Learn more about the Massachusetts ceo soak

Our Chapter’s advocacy efforts continue in both Washington and Boston. On Beacon Hill, our Chapter is one of the lead organizations fighting for people with disabilities in the Commonwealth of Massachusetts with our drafting of and support for H. 201 and S.753, An Act Advancing Health Care Research and Decision-Making Centered on Patients and People with Disabilities. These bills would enshrine essential patient protections including:

  • A ban on the use of the Quality-Adjusted Life Year, QALY, a discriminatory metric that puts a lower value on treating seniors, people with disabilities, and patients with chronic conditions. For this reason, the Affordable Care Act included a ban on the use of the QALY in Medicare, but some state Medicaid programs still attempt to use it as a cost-cutting mechanism.
  • A requirement for Massachusetts to rely on research that meeting criteria of patient-centeredness, including research that looks at patient subgroups, research that evaluates outcomes that matter to patients, and research that meets requirement of scientific rigor.
  • Robust engagement with patients and people with disabilities surrounding the state’s decision-making processes. This includes transparency regarding the state’s research and a meaningful opportunity for stakeholder comments.
  • All policies must have an appeals and physician override mechanism to ensure that patients and their clinicians remain the ultimate decisionmakers in regards to care.

It is essential Massachusetts protect people with disabilities and chronic illnesses from discrimination in health care and ensure access to pharmaceutical and other therapies when they are brought to market.

After 15 months apart, we are coming together again. Be well and stay safe.

Author Information:

John Hedstrom is the Executive Director of The ALS Association Massachusetts Chapter. John came to the Chapter by way of Washington, DC and California with an extensive background in health care advocacy and association executive leadership. He has effected change and served as the front-line voice for multiple national organizations, establishing himself as a trusted resource for many constituencies. John was born and raised in Massachusetts and now resides in the area with his wife and three children. In his tenure at The ALS Association Massachusetts Chapter, John has worked tirelessly to lead the Massachusetts Chapter to the forefront of the ALS Association. He continues to prioritize providing our families with more comprehensive care services, funding additional research, and more robust advocacy efforts.

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