Hope White on LONG COVID
The Massachusetts Community Engagement Alliance (MA-CEAL), a program under the National Institutes of Health (NIH), emerged during the height of the pandemic to tackle the vaccine hesitancy and high mortality rates prevalent in communities of color. As the pandemic evolved, however, so did its challenges. To delve into the impacts of Long COVID, a condition many are still unfamiliar with, we followed-up with Hope White, the Director of Community Engagement for MA-CEAL at Boston Medical Center.
“I don't think the community knows the severity of this illness - that it can be debilitating.”
Hope (middle) at the Haitian Flag Day and Parade
Hope characterizes society today as "COVID-weary" saying no one wants to hear words like “uptick,” “mask,” or “booster” anymore. Nevertheless, COVID cases are on the rise. Hope’s first hand experiences in the community reveal a harsh reality. Many individuals, seemingly recovered from COVID-19, find themselves grappling with recurring symptoms that significantly affect their daily lives. Forgetfulness, fatigue, headaches, and joint pain become the new normal, but the awareness of this condition — Long COVID — is shockingly low. Hope recounts numerous instances where people she has encountered have never even heard of Long COVID, let alone how to seek proper treatment.
“I had COVID, and I had it severely.”
Hope’s personal experience adds a deeper layer to her passion for advocacy. Hope has battled a severe case of COVID-19, compounded by a pre-existing chronic illness that weakened her immune system. Hospitalized for three weeks, Hope knows first-hand how serious COVID-19 is. Hope, however, has transformed her experience into a beacon of resilience and now works to shine a light on the often-overlooked challenges faced by those grappling with the aftermath of the virus. In fact, in response to this silent crisis, Infectious Disease doctors from BMC, Hope, her team, and the CEAL evaluation team designed an ingenious solution to further educate Boston communities on their health – the Long COVID Ambassador Training Program.
“If we train people to do the same type of education work that we do, we can cover more ground and get the important information out to the people who need it.”
Hope (third from the left) at the Roxbury YMCA MLK Day Breakfast
The Long COVID Ambassador Training Program is a community-friendly initiative focused on educating individuals about Long COVID, its symptoms, and where to seek help in Boston. The program uses the "train the trainer" model, empowering community members to share crucial information and bridge the awareness gap. Participants undergo a two-day training and become ambassadors equipped to conduct paid, one-hour workshops in their communities. The program has already achieved remarkable success, even receiving an invitation to facilitate a workshop at the Worcester Department of Public Health.
“Not only should you be concerned for yourself, but you should be concerned about people in your circles and in your surroundings.”
The fight against COVID-19 and its aftermath is far from over. The ebb and flow of media attention, the fatigue setting in within communities, and the misconception that the worst is behind us pose significant challenges. Hope, drawing from her personal experience, reminds us that the virus is still a serious concern with new variants emerging. She emphasizes the importance of vaccination and continued precautions, particularly within marginalized groups facing disproportionately high mortality rates. The battle against COVID-19 and its lingering effects requires not just medical interventions but a shared commitment to well-being if we are to protect ourselves and our communities.
“It's up to you to take that walk, take that cab, take that bus, get boosted, wear a mask, and wash your hands—very basic and easy things to do because that could save your life. It's that simple."
To learn more about Long COVID from leading experts, watch our Community Conversation “Let’s Talk About Long COVID” here. For Long COVID resources available in Boston, click here.
Published on January 2024,
written by Adede Appah-Sampong
