Bostonia: How did you see COVID-19 wreaking havoc on nursing homes?

Lanzikos: Dignity Alliance got underway when a few of us took note of the state administration trying to evict nursing home residents to create COVID-specific care facilities. And we thought that was bad for a number of reasons—for public health reasons, for sure—but also patient rights, as well as just the dignity of people. Four or five of us wrote an op-ed that was published in the Globe, calling for the practice to be halted. Fortunately, the state did end it after that first effort, but it was a mess, a tragic mess. In Massachusetts, well over 20,000 people have died, and…in this figure, the state has officially recorded just under 7,000 people in nursing homes. We think that is a significant undercount, in addition to hundreds of long-term care staff members who succumbed to COVID-related infections.

Bostonia: Most of Dignity Alliance’s goals are related to healthcare. How does the COVID day of remembrance figure into your mission?

Lanzikos: Unfortunately, in our society, if things become invisible, then they will disappear from our decision-making priorities, and that ought not to happen. So, how do future generations understand the potential impact of a disease unless we keep it fresh, not just in the public health discourse, but in society as a whole? We thought that a COVID victims memorial day was critically important for a number of reasons…. Something like a COVID day of remembrance helps, first and foremost, to honor the people who died, and second, to establish a public policy marker to say, “Here’s what went wrong, here’s what went right, let’s build upon this in the future so that we don’t repeat this.”

Frankly, people who didn’t experience it firsthand have a hard time accepting and understanding it—especially when you consider all the disinformation and misinformation around COVID that’s out there. If this fades from memory, it’s very easy to, in 20 years, forget all about the lessons that we should have learned.

Bostonia: Is that dis/misinformation contributing to the challenge in getting federal recognition for the holiday?

Lanzikos: Oh, yeah, absolutely. This should not be a partisan issue, it should not be controversial. But unfortunately, so much in our society these days has become politicized. People locally have been generally supportive—we’re not getting pushback at all. There’s a different set of circumstances here. In Congress, they got into the riptide of partisan politics, but I think here in Massachusetts it was just more ennui at the state level.

Bostonia: How so?

Lanzikos: Unfortunately, I think what we’re observing, especially in this past legislative session, is a lack of urgency in regard to many otherwise beneficial bills. It would definitely be concerning if the COVID day of remembrance legislation was pushed aside and everything else was passed, but many, many equally important bills did not get the attention they deserved this session because the legislature just didn’t prioritize them.

Massachusetts, unfortunately, has a horrendous track record in this regard. Annually, well over 7,000 bills, maybe even close to 8,000, get filed every session and a relative handful get passed. A major bill we have been active with, a significant overhaul of the overall long-term care system, was introduced (in May) by Representative Tom Stanley (D-9th Middlesex), who’s a cochair of the Joint Committee on Elder Affairs. He asked us and others for input, so we provided a lot of information and recommendations for the bill—and it went nowhere. If you look at most bills that ultimately get passed, they have to get introduced several times before they get enacted and signed into law. It’a long, slow process, and sometimes there’s justification for that, but sometimes it’s just bad politics. 

We’re hopeful about the new session—we’re going to reintroduce the [day of remembrance] bill, and we’re going to redouble our efforts to get it passed. We plan to really push hard next time around, and we’re hopeful that it will happen.