Patients Frustrated Over Upcoming Closure Of MaineHealth Long COVID Clinic

By Evan Popp, Maine Beacon:

Mainers with long COVID are concerned that the closure of a MaineHealth clinic specializing in helping those with lingering virus symptoms will only add to the difficulty they face in accessing treatment in the state.

The decision to close the clinic was announced by MaineHealth in early October. A spokesperson for the hospital network said the clinic has not been accepting new referrals since the beginning of September in preparation for shutting down in January of 2023 and has been working through the fall with patients and providers on the transition.

“Throughout the pandemic, MaineHealth has made a commitment to providing the most up-to-date care for patients experiencing COVID-19 and post-COVID complications,” spokesperson Caroline Cornish said. However, she said the hospital believes long COVID patients are better served through treatment by their primary care physician, who has knowledge of their medical history, instead of a separate clinic.

Cornish did not specifically address a question from Beacon about some patients’ concerns over this plan. But she did say the hospital is continuing a study to better understand long COVID, which those interested in joining can find information about here.

Long COVID — which the Mayo Clinic classifies as suffering from new, returning or ongoing symptoms of the virus — can lead to fatigue, chest pain, joint pain, dizziness, headaches, digestive issues, blood clots and brain fog, among other symptoms. Overall, federal data from earlier this year shows that 7.5% of the U.S. adult population — or roughly 20 million people — have long COVID symptoms.

Frustration over long COVID treatment plan

The closure of the MaineHealth clinic has long been rumored. In May, South Portland resident and long COVID patient Marie Follayttar, who runs the political action group Mainers for Accountable Leadership, told Beacon that she had been informed the clinic was slated to close in August. A spokesperson for MaineHealth responded that the group had no plans to close the clinic in August, but the hospital network would not say definitively whether the clinic would stay open past that date.

Now that the clinic is confirmed to be closing in January, Follayttar — who was diagnosed with long COVID earlier this year and has been dealing with brain fog, heart and lung damage, and fatigue — said she is worried about the push to have primary care physicians lead treatment of the illness.

“They’re saying they want to treat us this way, rather than having a clinic in Maine that would be comprehensive, where folks are educated and up to date on the latest research and latest treatments,” she said.

Follayttar pointed out that health experts are still learning about long COVID, with the Maine Center for Disease Control and Prevention participating in a multi-state study on long COVID with the U.S. CDC that is not yet finalized. As a result, she worries many primary care physicians won’t have an in-depth understanding of the ailment without significant education by the state.

Follayttar said she received an email in early October from Bethany Beausang, a senior policy advisor for Gov. Janet Mills, in which Beausang cited the administration’s efforts to train primary care physicians on long COVID and said the state’s focus is on raising awareness about the illness among doctors and the public. However, Follayttar said she hasn’t seen evidence of initiatives from the state to raise awareness about long COVID and added that patients have thus far not been invited to participate in training for primary care physicians. Follayttar also expressed skepticism that the training can happen quickly enough to create a seamless transition once the MaineHealth clinic closes.

“I do not understand how the state is going to scale up with their education this fast to properly prepare patients,” she said.

As Beacon previously reported, even when the MaineHealth clinic was open, some with long COVID had trouble accessing treatment and expressed frustration with the lack of dedicated resources and systems across the state to help those with the condition.

Follayttar told Beacon in May that she only knew of one other long haul-specific clinic, run out of Lewiston by Central Maine HealthCare, which had limited capacity. She added that she’s looked into where long COVID patients in Maine are referred if they need treatment at a clinic and found that the top recommendations include Massachusetts General Hospital in Boston and Dartmouth Hitchcock Medical Center in Lebanon, New Hampshire, both of which are several hours away from most points in Maine.

‘There was no help’

Other long COVID patients are also worried about the closure of the MaineHealth clinic.

Janeen Lapierre of Old Orchard Beach said she tested positive for COVID in January of this year and “pretty much feel like I never got better.” Her symptoms include fatigue, brain fog and lack of ability to concentrate for long periods of time.

Janeen Lapierre | Courtesy photo

Lapierre said she wasn’t referred to the MaineHealth clinic until June and had to wait until September to even be seen, which is the only appointment she’d had there as of late October.

“It just seems like the wait times for care are outrageous,” she said, adding “it just doesn’t seem right to me that this is where we’re at with our health care system” when it comes to long COVID.

Lapierre reacted with dismay to the news that MaineHealth clinic is closing, arguing that treatment options for patients with the ailment are already scarce.

“I’m shocked that they’re going to take away that one resource we do have in the state. It’s a very complex set of symptoms and not every patient has them exactly the same, and honestly I feel very lucky with the primary care physician I have… But I know that that is a luxury and not the status quo,” she said, pointing to the shortage of doctors in rural Maine.

A tragic example of the difficulty some long COVID patients have had accessing treatment is the story of Jennifer Zack of West Gardiner and her husband.

Zack said she and her husband both got COVID in January of 2021 and that she experienced lingering symptoms such as exhaustion and difficulty remembering things.

Their primary care physician wanted to send them to Massachusetts General but they both had MaineCare and Zack said they were denied coverage for the Boston hospital because there were clinics in Maine. However, she said even though multiple referrals were put in for long COVID clinics, including the MaineHealth one, they never heard back.

Jennifer Zack holds up a photo of her late husband | Courtesy photo

Zack said her husband during this time was dealing with severe anxiety and depression, which she believes was brought on by long COVID. On September 6, he was checked into MaineGeneral because he was suicidal. But Zack said he was let out a little over six hours later and that the hospital told them her husband was just dealing with anxiety.

On September 17, Zack’s husband committed suicide.

“My husband actually never came out of COVID,” she said. …“There was no help.”

Zack said she believes having a more built up medical system that devoted significant resources to those with long COVID would have changed what happened to her husband.

She added that the closure of the MaineHealth long COVID clinic will only add to the confusion many in the state already face over how to access treatment.

“They actually probably need more COVID clinics, [rather than] shutting places down,” said Zack, who is still dealing with her own long COVID symptoms.

“It doesn’t make any sense,” she said.

Editor’s note: If you or someone you know is struggling or in crisis, help is available. Call or text 988 or chat 988lifeline.org to reach the 988 Suicide & Crisis Lifeline.

Casey Quinlan of States Newsroom contributed to this report.

Beacon is a website and podcast created by the Maine People’s Alliance to highlight the experiences of everyday Mainers, share information about the political and policy processes that affect Maine people and promote a progressive worldview based on community, fairness and investing in the future. Sign up for our daily newsletter and follow us on Facebook, Twitter and Instagram.