If you want fast, reliable, accessible COVID-19 testing in Massachusetts, it helps if you know a guy who knows a guy. Especially if you have the time and money — and that guy is a scientist.
Frustrated by the lack of an overarching state or federal strategy for COVID-19 testing, an increasing number of local organizations are rolling up their sleeves and figuring out how to create their own testing programs, part of a desperate effort to return to normalcy as the pandemic drags on and solutions — amid a bumpy vaccine rollout — still seem far off.
In Needham, one woman launched a Jewish temple school’s testing program, serving about 400 students and teachers, and is now considering buying lab equipment. In Brookline, staff at a low-income senior housing complex secured rapid tests for staff, residents, and their visitors. And in Wellesley, a group of parents pioneered their own surveillance testing program to monitor COVID’s presence in the public school district there, complete with a barcode scanning app to link names and samples that they built themselves.
“Why is this my problem?” Phoebe Olhava, organizer of the program at Needham’s Temple Beth Shalom, asks herself. “It’s my problem because other people aren’t doing it and it needs to get done.”
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In this unprecedented time, it is small groups with expansive Rolodexes, not state or federal officials, that have taken it upon themselves to harness the power of testing in ways that have been rarely utilized on a large scale. Thus far in the Boston region, it has only been colleges that have employed aggressive testing as a way to reopen their campuses, but now the same strategy is taking hold elsewhere.
These groups are using a technique known as surveillance testing, a method of testing large groups of people frequently to catch cases early and isolate them. This is different from one-off diagnostic tests that people with symptoms are encouraged to take.
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Though the United States has performed more tests per capita than any other nation, Johns Hopkins University researchers say, the country has been much less successful in using testing techniques like surveillance to curb the spread of cases.
Among those who have pioneered their own surveillance testing programs are exhausted parents who want, and often need, their children back in classrooms. That is how one program evolved at the preschool and after-school programs at Temple Beth Shalom.
On normal days, the school’s teachers greet cars in the drop-off line at 8 a.m., collecting bundled-up toddlers who slide out of minivans with lunch boxes and backpacks. Now, every Thursday morning, they also collect a small, clear plastic bag with a little tube that contains a nasal swab that the children took at home. The school overnight ships the tubes to a Tennessee laboratory and families receive results the next day.
“We are very lucky,” said teacher Johari Pimentel, whose 3-year-old daughter recently swabbed herself, along with her stuffed animal, for the first time. Pimentel said testing makes her feel a lot safer teaching, especially because her students are too young to wear masks.
This surveillance testing program has been in place for two months for teachers, but recently the school began also testing students who wish to participate. The school also tests teachers from three nearby temple schools, because testing for early-childhood educators is so scarce.
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Olhava, a radiologist at St. Elizabeth’s Hospital, grew frustrated this fall watching slow progress for implementing screening in her children’s public schools. She couldn’t fix that situation, but researched the testing world to help her temple.
Olhava spoke with several vendors and explored different types of tests and prices. A parent who works as a doctor put in a standing order for tests. It worked.
Now the school is exploring ways to reduce the $50 per-test price point — about half of which goes towards the swab, and the other half toward paying a program administrator. The school is considering switching to a cheaper program or purchasing its own lab equipment, after Olhava read about a Jewish community center in California that bought a lab testing machine for $10,000.
“These things are just popping up here and there; word is spreading and people are communicating,” she said.
Without a state or federal plan or even a central information site about this type of surveillance testing, these do-it-yourself operations have relied on word of mouth, mass e-mails, and informal introductions. Over the past few months, people have flocked to an invitation-only Thursday night Zoom call.
The weekly videoconferences began over the summer, when Jesse Boehm, a Wellesley parent and local cancer researcher, and his wife, a high school biology teacher, convened a small group of Wellesley parents, some of whom were the leading infectious disease researchers and immunologists in the Boston area. The group began to develop a scientific rationale for reopening schools safely and how testing might be a part of that.
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“It was tremendously daunting,” Boehm said.
Next, they recruited parents with expertise in finance, who brainstormed how to raise money to fund such a program, and they found a local foundation to support it.
“The DIY aspect of this is really local sourcing,” Boehm said. “Sourcing professional expertise from within a school’s parent population.”
Then they began to grow. As Wellesley developed its program, the group decided it was important to also include other districts, especially those of lower socioeconomic status. Revere and Chelsea superintendents joined the Zoom calls.
The group soon swelled to sometimes more than 100 people. More superintendents, desperate for ideas, began to log on. The leaders of testing laboratories came to present their latest developments and invited schools to participate in pilot programs. School committee members, local board of health members, school nurses, and philanthropists offered suggestions and asked questions.
The 8 p.m. forums went late and interrupted kids’ bedtimes, but the discussions felt refreshing, Boehm said. The disparate pieces of this confusing and daunting puzzle had finally found one another and, for a few late hours, could begin to build solutions.
The system his group developed in Wellesley has now helped form the basis for a state-wide program the Baker administration is rolling out, which will be among the first in the nation of its kind. The public school surveillance testing program will be open to all districts, with the goal of reopening more classrooms sooner by using testing to quickly spot and isolate cases.
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Many of the groups that have created their own testing programs are painfully aware that their own financial and social privilege has played a role in the success of these fledgling programs.
“The fact that we knew someone who knew someone, I mean this is like white privilege playing itself out,” said Amy Funkenstein, a member of a committee of parents that established a weekly testing program for staff and students at the Lincoln Nursery School at the deCordova Sculpture Garden. “That was the only way that we got this pool testing set up.”
The parents were first able to secure tests because one father works at a medical diagnostic company that had developed a COVID-19 test. Later, thanks to another connection, they switched testing methods to the less-expensive pool testing format.
They now test 47 children plus 10 teachers and the director each week.
The hallways of the Harold and Ronald Brown Family House, low-income senior apartments on Harvard Street near Coolidge Corner, have been quiet during the pandemic, as 75 residents shelter in their apartments to stay safe. The new facility opened in September; people moved in alone and many still haven’t met their neighbors or felt safe welcoming visitors. The sunny multi-purpose room sits empty and a patio strung with lights is untouched; loneliness and isolation have taken hold here.
But a new, self-administered rapid-testing program hopes to change that.
Amy Schectman, the CEO of 2Life Communities, which runs Brown House and a network of other residences, had grown frustrated trying unsuccessfully to acquire rapid tests for her facilities. Instead she worked with local biotech company E25Bio to be part of their pilot program. Their tests are not yet approved for sale on the market.
Now staff are tested every three days and residents can take a test after they return from trips outside the building. They can also now ask their visitors to be tested in the lobby before they come upstairs. Results come back in 15 minutes.
“[Testing] has just allowed us to open the doors a little bit,” said Cindy Katzeff, executive director of the Brown House. “We are using every resource we have at our disposal to start to get back to a little bit of normal.”
This past week, for the first time, the facility held its first social event of the pandemic, a movie screening for two groups of five residents at a time. The five were tested that morning before the movie, and staff sanitized the room between groups.
Sure, they had to sit six feet apart and wear masks. There was no communal popcorn. But it’s a start.
Laura Krantz can be reached at laura.krantz@globe.com. Follow her on Twitter @laurakrantz.