Amid a push across the country to return to the pre-pandemic “normal” even as the U.S. experiences a renewed surge, some in Maine with persistent cases of COVID-19 say going back to how things were is impossible for them, particularly as they struggle to access care for a complicated series of symptoms.
While most people with mild cases of COVID-19 recover in a few days or weeks, some experience symptoms that last far beyond that point — a condition known as long COVID. While there is still much unknown about the ailment, the U.S. Centers for Disease Control and Prevention defines long COVID as persistent symptoms that continue beyond four weeks, noting that those who are unvaccinated may be at higher risk of getting the condition.
The exact number of long COVID cases in the U.S. is hazy. But last week, the CDC published new research that found one in five adults under 65 and one in four adults older than 65 “experienced at least one incident condition that might be attributable to previous COVID-19.”
And in March, the Government Accountability Office estimated that anywhere between 7.7 million and 23 million people could develop the ailment and that it could push a million people out of the workforce. In addition, an analysis of 31 studies from around the world found nearly half of people infected with COVID-19 reported still having symptoms after four months while a UCLA study released earlier this year found 30% of those treated for the virus developed long COVID.
Getting treatment a challenge for some long haulers in Maine
In Maine, some with long COVID say they’ve had trouble getting treatment and are frustrated with the lack of dedicated resources and systems to help those with the condition.
South Portland resident Marie Follayttar, who runs the political action group Mainers for Accountable Leadership, said she was diagnosed with long COVID a couple of months ago. Symptoms she’s experienced include brain fog, heart and lung damage, and fatigue, among others.
Navigating the thicket of hospital networks in Maine to search for long COVID-specific treatment proved challenging, Follayttar said, particularly since the ailment has sapped her ability to complete a lot of tasks in a day.
“When you have a chronic disease, your currency and how you measure your day is energy,” she explained.
Marie Follayttar talks with Rachel Maddow in 2017 | Photo via screenshot
After extensive research, Follayttar said she was able to find a clinic specializing in long COVID in Portland run by MaineHealth. But Follayttar said the clinic is only open for limited hours and added that she was told the clinic is slated to close at the beginning of August.
In an email last week, however, MaineHealth spokesperson Caroline Cornish said the organization has “no plans to close the long COVID clinic in August” but added that the health care network is continuing to “evaluate the best model of care to ensure access for patients as our knowledge of long COVID advances.”
That email from Cornish came after Katie Fullam Harris, chief government affairs officer at MaineHealth, would not say definitively whether or not the long COVID clinic would stay open once August arrives. Harris said in an interview with Beacon that MaineHealth is always evaluating the best model of care in all services it provides, including the clinic, which was opened through a grant as part of a National Institute of Health study on long COVID and has seen 87 patients since launching in September.
Harris also emphasized that long COVID-specific clinics are just one piece of the puzzle when it comes to treatment, particularly since there is not yet a universal definition for the condition.
“We are a health care system that provides access to primary care [physicians] and specialty care and that would be the primary way that individuals who have symptoms related to COVID or not related to COVID would receive treatment through us,” she said, noting that a primary care doctor could refer people with long COVID to specialists in behavioral health, cardiology, pulmonology and other medical fields depending on the patient’s symptoms.
Other than the MaineHealth clinic, Follayttar said she only knows of one other long haul-specific clinic, run out of Lewiston by Central Maine HealthCare. However, she noted that the Lewiston clinic has limited capacity to take in patients. Central Maine HealthCare did not respond to a request to interview the doctor running the clinic.
Northern Light Mercy Hospital also launched a long COVID clinic in September. However, it is no longer operational, a spokesperson told Beacon. While the clinic served patients well, the hospital found most people could be treated through their primary care provider in conjunction with specialists, Ed Gilman of Northern Light Mercy said.
But Follayttar argued the absence of widespread long COVID treatment centers in Maine is a serious problem.
“Without coordinated clinics for people and up-to-date research, our regular doctors and regular primary care physicians are not prepared” to help patients with the illness, she said.
Follayttar added that state health officials should be allocating more resources to help those with long COVID.
“There is no plan by the government to address [long COVID],” she said.
When reached by Beacon, a spokesperson for the Maine Center for Disease Control and Prevention did not specify any programs the organization has launched to specifically help those with the condition right now but said Maine is “participating in a multi-state, U.S. CDC-led study of long COVID” and that data from that study will be released after it is peer reviewed.
A spokesperson for the Maine Department of Health and Human Services did not respond to a question about whether that agency has set up any long COVID-specific programs.
‘I would love to go back to normal’
Amanda Ambrose | Courtesy photo
Amanda Ambrose of Winterport, an intern with Maine People’s Alliance (of which Beacon is a project), has also struggled to access treatment for long COVID within the state. Ambrose said she was diagnosed with the condition at the end of February and continues to deal with symptoms such as severe anxiety and periodic panic attacks along with brain fog, dizziness, and some breathing difficulty.
Ambrose said her primary care physician was able to prescribe medication for anxiety, which has helped but not fully stopped her panic attacks. The doctor also referred her to a neuro-ophthalmologist, but that the practice was too full and couldn’t see her. Ambrose was then referred to a regular neurologist but placed on a waitlist. It may be October until she is seen there, she said. She is also waiting for an appointment with a pulmonologist for her breathing difficulties and recently had a referral placed to see a medical provider about brain fog.
In response to those long wait times — which were for practices in the Bangor area — Ambrose called specialty health providers in and around Portland and Augusta but found waitlists that were often even longer, reaching into 2023 in some cases.
She also has not been able to access a long COVID clinic in Maine and said she was instead referred to a practice in Boston. But with two small children, Ambrose said traveling to Massachusetts to get care isn’t feasible for her.
“It’s very confusing and very frustrating. It just doesn’t seem like there’s enough resources” to help Mainers with long COVID, Ambrose said.
The situation is also frustrating, she noted, because she’s been forced to scale back the time she can spend working due to dizziness and other symptoms caused by the condition.
Tracy Morin | Courtesy photo
Tracy Morin, an Arundel resident with long COVID, is in a similar situation. Morin has experienced frequent flare-ups of the condition since she was infected with the virus in January of 2021, and her symptoms have included shortness of breath, lightheadedness, tinnitus, headaches, brain fog, migraines and vertigo.
Morin said she used to routinely work 60 hours a week and have an active life outside of her job. All of that has changed since her diagnosis. Morin said she now has to “pay attention to every bit of energy that I use, to be aware how much I need to rest in order to recoup, meaning I have to say no to spending time with friends and family a lot.”
While she has gotten medication from her primary care physician to help manage the condition, Morin said long COVID has forced her to miss significant time at her job in a big box retail store. In a short period, she used up seven weeks of sick time accumulated over 11 years. She also was forced to use a week of vacation time recently when her symptoms worsened because as someone who lives “just above paycheck to paycheck,” Morin can’t afford to not get paid. And even when she can work, on bad days Morin said she is at half capacity compared to before her diagnosis.
The struggles Morin and others with long COVID are facing come as a significant chunk of the American public apparently believes the pandemic is finished amid a push by officials to return to normal.
To Morin, that mindset is exasperating.
“Do you know how upsetting it is to hear people say ‘the pandemic is over’ and that we can go back to normal? I would love to go back to normal,” she said.
Long COVID bills introduced at federal level
Craig Saddlemire, development organizer for the Raise-Op Housing Cooperative in Lewiston and another Mainer who had long COVID, said one issue with responding to the condition is how much is still unknown about it.
Like others with long COVID — which he said caused periodic heart palpitations, anxiety, fatigue and loss of smell from the beginning of 2021 until October of that year — Saddlemire said getting treatment was challenging. While his doctor acknowledged the reality of the ailment and ran a variety of tests, Saddlemire said “none of those measurements were producing anything that would yield any kind of prescription or therapy or recommendations to change anything.”
“It’s probably just something that’s going to take a while to study,” Saddlemire, who eventually recovered from the condition, said.
Craig Saddlemire speaks at a press conference on housing at the State House | Beacon
Still, despite the many unknowns, there could be some help coming from the federal level for those with long COVID. For example, after criticism from a range of health experts, the Biden administration in April announced plans to speed up research into the condition and proposed spending $20 million to figure out how health systems can best treat patients and to expand long COVID clinics set up by the Department of Veteran Affairs.
In addition, Follayttar said there are several measures being considered by Congress that could assist people with the illness.
Follayttar cited a bill, sponsored by U.S. Rep. Ayanna Pressley of Massachusetts, that would expand treatment for long COVID around the country. The legislation would authorize grants of up to $2 million for health care providers to address the illness, fund the creation and expansion of long COVID clinics, prioritize money for providers that work with underserved populations, ensure treatment for long COVID isn’t denied based on insurance coverage or other factors, and encourage continued training for medical professionals working in long COVID clinics.
That bill, introduced in the House in April, hasn’t yet moved forward, though.
Follayttar also mentioned another federal bill called the Care for Long COVID Act, introduced by U.S. Sen. Tim Kaine of Virginia, who has long COVID himself. The measure, co-sponsored by Maine Sen. Angus King, is designed to accelerate and improve research on long COVID, educate patients and health professionals about the illness, provide instruction for employers and schools about long COVID, and facilitate partnerships with community-based organizations to help those with the condition access services.
The legislation was introduced in March but hasn’t advanced in the Senate so far. Still, Follayttar said she’s heartened to see members of Congress at least beginning to pay attention to the impacts of long COVID.
“That’s really the only place I’m seeing active bills at this stage,” she said.
Top photo: Coronavirus computer-generated image | Getty Images
"care" - Google News
May 31, 2022 at 07:34PM
https://ift.tt/iMIJ7Kt
'Confusing and very frustrating': Mainers with long COVID say accessing care is a struggle - mainebeacon.com
"care" - Google News
https://ift.tt/cqydU3T
Shoes Man Tutorial
Pos News Update
Meme Update
Korean Entertainment News
Japan News Update
Bagikan Berita Ini
0 Response to "'Confusing and very frustrating': Mainers with long COVID say accessing care is a struggle - mainebeacon.com"
Post a Comment