BOSTON (SHNS) – People with disabilities or who are receiving treatments for diseases like ALS could gain stronger protections against discrimination in health care settings under a slate of bills discussed Wednesday.
Proposals from Rep. Josh Cutler and Sen. Adam Gomez (H 1180 / S 753) would ensure individuals with disabilities or chronic health conditions won’t be denied life-saving treatments — or placed at a lower priority — during a crisis with limited resources based on “presumptions” that they have a “reduced quality of life” or are “less worth saving.”
The legislation applies to public and private agencies and providers. At a Joint Committee on Health Care Financing hearing, Gomez signaled the bills reflect the reality of the COVID-19 pandemic, in which hospitals and health centers had to make “tough decisions” about effectively distributing their strained resources.
Separate legislation would block MassHealth from using discriminatory metrics — such as the value of treatments in extending a patient’s life — to gauge whether therapies are cost effective and to determine how they’ll be covered or reimbursed. In one controversial measure, a negative score is “akin to saying that it’s more cost effective to let them die than to provide treatments that are anything less than a cure,” said Danielle Adams, managing director of advocacy at the ALS Association, during the hearing.
Steven Kowalski, who said he was diagnosed with ALS in 2017, urged lawmakers to support the bills filed by Sen. Crighton, as well as Rep. Marjorie Decker and now-Veterans’ Services Secretary Jon Santiago (S 730 / H 1183).
Evaluating someone’s quality of life through a formula is “reckless,” said Kowalski, who added he’s on treatments that are helping him. “We all want to see reduced health care costs — there’s no doubt about that,” Kowalski said. “I believe there are other ways that we can measure quality of life and then look at it from a holistic point of view.”