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By Eric Reed | Video by Sam Crimmins
The COVID-19 pandemic has been hard on just about everyone. But some have been more affected than others. Those who rely on regular health care visits and wide support systems to manage chronic conditions are among those who have felt the repercussions of the pandemic the deepest in their day-to-day.
“People with chronic diseases are dependent on the health care system and a functioning ecosystem just like we depend on electricity, on garbage pickup, on internet,” says Dr. Michael Sherman, chief medical officer at Harvard Pilgrim Health Care. “The pandemic has disrupted all of that.”
Not only has it been important for individuals to remain connected to their providers during the pandemic, but also to receive support navigating circumstances such as lost employment, housing instability, emotional support needs, and food insecurity, adds Sarah Doherty, Harvard Pilgrim’s director of population health and care management. Doherty and her team work closely to support the health plan’s members who are managing one—or multiple—chronic conditions.
“We view ourselves as a support team,” she says. “Across our organization, Harvard Pilgrim nurses, social workers, health coaches, pharmacists, and care coordinators are available to our members who are struggling to manage their health and all aspects of their wellbeing to offer support, help encourage self-advocacy, and assist with guiding to solutions in a time when there’s a heightened need.”
Here’s how three New Englanders with chronic illnesses have navigated life and care during the pandemic—with a little help from their communities.
Support networks stepping up
“What am I letting into my home on a daily basis?” wonders Tiffany Rasmussen, a Westwood, Mass. resident who suffers from cerebral palsy. This condition has left her needing the help of a wheelchair and with a weakened immune system. “I am constantly at risk,” she says, “because I have personal care attendants coming in and out constantly … Quarantining is not possible.”
For Rasmussen, carefully managing her support network has become an absolute necessity. She depends on a circle of friends, family, and personal care attendants to deal with many aspects of her day-to-day life. Though Rasmussen is active in her church, an organizer on her power soccer team, and an aspiring journalist, everyday things such as getting out of bed, making her meals, and getting dressed often require help. In ordinary times negotiating her medical schedule and circle of personal care attendants, or “PCAs,” is demanding enough.
During the pandemic, it can get nerve wracking.
“It’s dangerous because it’s sort of like a revolving door,” Rasmussen says. “You’ve got people coming in and out of the home on a daily basis. You don’t know who they’ve come in contact with, if they’ve been exposed to the virus, if they’re bringing it to the home. It’s just, it’s a big concern.”
Today she relies on family and friends to take over many of the jobs formerly done by PCAs, and everyone ensures that they take precautions such as masking up and using hand sanitizer. With her doctors increasingly available via telehealth visits and her social circle getting better at hanging out virtually, keeping engaged has gotten easier for Rasmussen as the pandemic has gone on.
Community comes in many forms
“Reach out and ask for help,” says Bob Casanta. “From anybody that you can.”
The coronavirus is the second epidemic Bob Casanta has been personally affected by. He is HIV-positive, and remembers the AIDS epidemic of the 1980s and 90s. It was an experience that shaped much of his earlier life. More than anything else, he says, at times like this it’s important to lean on the people in your life. Even if friends and family are on the telephone or connecting through a computer screen, having a community can help you get through.
For Casanta, that network includes the Jamaica Plain-based organization Community Servings. This organization delivers what it calls “medically tailored” meals to individuals with chronic conditions and other serious illnesses. Casanta, for example, receives meals designed around an HIV or AIDS diagnosis. Others may receive meals built to manage diabetes, or food that helps with a heart condition.
For people suffering with chronic illness during the coronavirus this kind of help has become more important than ever. Unable to safely shop for their own food, in some cases unable to afford it due to the pandemic’s economic downturn, many need this lifeline.
Harvard Pilgrim Health Care is also working on ensuring that the benefits of a healthy diet, particularly during the pandemic, stay in the forefront of individual’s plans for their personal health. They recently teamed up with Foodsmart by Zipongo to offer an app designed to make it easier for members, particularly those with chronic conditions, to eat healthier. The app features personalized recipes, a digital meal planner, easy grocery list, a home delivery option, discounts at local grocery stores, and ways to earn rewards.
Connection is everything
Michael Barker suffers from clinical depression, a disease which has affected his career and his personal life alike. To manage this, Barker relies not only on his doctors but also the community he has built around himself, connections, and social routines he describes as an integral part of his ongoing recovery.
Barker is a member of the Center Club, part of Bay Cove Human Services, a program in which adults dealing with psychiatric disabilities take on valued roles in the communities of their choice. “They have been a real support in terms of not only offering limited hours, but also doing things like having virtual calls either by phone or Zoom,” he says. “And they continually call us every week to keep track of how we’re doing.”
During COVID-19, Barker has not regularly been able to see his support network in person, so he has needed to maintain these connections when and how he can.
Nurturing a sense of community through tools like video conferencing and support networks like Bay Cove has been a key part of treatment during the coronavirus pandemic.
We should expect this trend toward remote treatment options to continue, says Sherman of Harvard Pilgrim Health Care.
Telemedicine tools such as remote monitoring devices and video conferencing have offered many people with chronic conditions the option to interact with doctors without their usual time-consuming and disruptive commutes.
“I think that we’re going to be surprised about how much can be achieved through telemedicine,” Sherman says. “I think that it’s replacing a lot of [in-office medical] care … for check-ins, it’s fine.”
Telemedicine has helped people like Tiffany Rasmussen and Michael Barker continue to see their doctors, even when they can’t safely get into the office. It has let Bob Casanta continue to connect with his friends and support groups. It has helped people with chronic illness maintain and expand the networks of friends and professionals they depend on. Through the combination of community support and technology these three, and millions of other people with chronic conditions like them, are making it through this pandemic.
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