The coronavirus has so far killed about 325,000 people in this country, but that staggering toll does not include the multitudes who have died because of disruptions, isolation and destitution related to the pandemic.
People with diabetes or Alzheimer’s disease are particularly vulnerable.
An Inquirer analysis of federal data found that from mid-March through November, Pennsylvania had 753 more deaths attributed to Alzheimer’s and diabetes than would be expected based on the last four years, a 14% increase for each cause. In New Jersey, there were 634 more deaths than expected for the two causes, an increase of 11% for Alzheimer’s and 33% for diabetes.
The same trends occurred across the country, according to the Inquirer analysis, which aligns with other studies this year of “excess deaths”—the gap between actual and expected deaths. The biggest deviation from the norm for Alzheimer’s and diabetes was in April, but every month had excess deaths attributed to these causes.
Even in the best of times, diabetes can be a costly, complex, frustrating condition to manage. Sugar builds up in the blood, either because the body can’t properly use or doesn’t make enough insulin, the hormone that regulates sugar. If not controlled with diet, exercise, and often, medication, diabetes can cause devastating complications including heart disease, blindness, kidney failure, and lower-extremity amputations. Diabetes is the seventh leading cause of death in the United States.
Because Type 2 diabetes, the most common type, is closely linked to obesity, incidence has been soaring over the last decade. About 34 million American adults and children—just over one in 10—have diabetes, and 88 million more adults—about one in three—have higher than normal blood sugar, called prediabetes.
Barbara Simon, an endocrinologist at Thomas Jefferson University Hospital, sees “multiple layers and multiple factors” related to the pandemic eroding the health and welfare of her diabetes patients.
“From my experience, the No. 1 issue is economic stress,” she said. “Many are out of work and not able to afford their already expensive medicines.”
Even the price of insulin, a decades-old generic drug, has increased dramatically over the last decade. (For those with Medicare, some Part D plans will cap the monthly copay for insulin at $35 beginning in January.)
“Studies have shown that prior to the COVID pandemic, up to 25% of insulin-dependent diabetics rationed supplies to save money,” area physician Jennifer N. Goldstein wrote in September in The Inquirer. “The dramatic rise in unemployment and the loss of employer-sponsored health insurance due to the COVID-19 pandemic is likely to bring this crisis to a breaking point. This is particularly true in Pennsylvania, where unemployment rates hover around 13%, and almost 700,000 residents are uninsured.”
As the U.S. Postal Service has struggled with pandemic-related turmoil—including historic volumes of mail and funding gaps—lost and late mail has been an issue for people ordering diabetes medication or blood sugar test strips. In June, when Cherry Hill resident Gerald Katz went to his local post office to ask what happened to his box of strips, he was told, “Well, we can’t find out.”
At the same time, the civil unrest and vandalism that led some Philadelphia pharmacies to shut down for weeks in the spring left many patients struggling to get their medications, said Simon at Jefferson.
People with diabetes are at elevated risk of severe COVID-19 if they get infected. But the isolation of staying home to avoid the virus also has dangers.
“Patients who used to go to the gym can’t anymore,” Simon said. “So they are more sedentary. Their eating habits have also changed. A lot of my patients report weight gains.”
“Patients are also unsure about coming in for medical care, perhaps because of fear of traveling or overburdening the medical system,” Simon added. “We try to assure them that diabetes is one of the diseases we can address well with telemedicine.”
Lisa Walke, chief of geriatrics at the University of Pennsylvania’s Perelman School of Medicine, said people with diabetes face a double whammy as the pandemic complicates their lives.
“Stress causes your sugars to be less well-controlled and, obviously, this has been a stressful time,” Walke said.
It is possible that some of the excess deaths of Alzheimer’s patients were actually due to undiagnosed COVID-19, experts said. Particularly in the early months, testing was not widespread in nursing homes, where many with advanced dementia live, and people without obvious symptoms may have been overlooked. Moreover, people with dementia were probably less likely than others to talk about feeling sick.
Walke, at Penn, said COVID-19 cases among frail dementia patients who live in the community are probably still being underdiagnosed. These patients may find it difficult to access testing, or may not be strong enough to wait in line.
Another possible factor behind the excess deaths: some Alzheimer’s patients could not withstand the social isolation and changes in their routines that were meant to protect them from the virus.
“Routine is an Alzheimer’s patient’s best friend,” said Carol Lippa, director of the Cognitive Disorders and Comprehensive Alzheimer’s Disease Center at Jefferson University Hospitals. “They do better when they know what to expect.”
Patients in facilities were suddenly surrounded by staff wearing masks, gowns, and face shields. People with dementia “don’t have the capacity to understand that, and that’s just stressful,” Lippa said.
At the same time, family members have been prohibited from visiting, cutting off the interactions that mean the most. That compounds the effects of isolation. “The quality of interactions is not as good,” Lippa said. “It’s not with the people who love them and are familiar with them.”
Walke and Lippa said dementia patients in the community also have felt their worlds shrink and change in harmful ways.
Maybe they couldn’t go to adult day care or church or take their daily walk. Visiting their doctors and getting home care has been more difficult. If dementia patients needed hospitalization for an illness other than COVID-19, many hospitals still don’t allow family visitors. Penn has changed that policy for dementia patients, Walke said, not only because they need loving contacts, but also because they need advocates who can communicate for them.
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