is an independent journalist in the Philadelphia area who writes about healthcare and other issues. Aine Cryts contributed reporting.

Robert Calandra

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Alexis Drutchas, M.D., does not claim to be a health insurance or Medicare payment hospice expert. Her expertise, says the palliative care physician at Massachusetts General Hospital in Boston, is caring for patients in their dwindling days of life.

“A lot of our work is talking about being present in the moment with families and sort of witnessing and hearing about their sufferings,” Drutchas says. “And that does help people to be seen and heard, even if we can’t fix the problem.”

It’s not unusual that once a week or so, a patient will confide in her that they would like to spend their remaining time at home. It’s a wish that families desperately want to fulfill. But for a variety of reasons, many can’t.

“They don’t have the family support, or they work full time and can’t be at home,” Drutchas explains. “Or they don’t have the financial means to pay for extra help, and they can’t honor that end-of-life desire of loved ones. That’s incredibly heartbreaking.”

Drutchas can only reassure families that “it’s not their fault that they can’t bring their mom home.”

The Tax Equity and Fiscal Responsibility Act of 1982 created the Medicare hospice benefit that entitles beneficiaries to Medicare coverage of end-of-life care. There is no debate that it was an important addition to Medicare’s coverage policies. Patients, families and medical professionals alike endorse the provision of hospice care, which can occur at home, in an assisted living facility, nursing home, hospital or stand-alone hospice facility.

Hospice does not have a reputation problem. A 2017 Kaiser Family Foundation survey found that 70% of Americans said they know at least a little about hospice. A large majority (85%) of that group had a positive opinion of hospice care and almost half (47%) said their opinion was very positive.

Dying at home was the norm before healthcare became more technology-driven in the 20th century. Now, it is more common. In a research letter published in the 

in 2019, Sarah H. Cross, M.S.W., M.P.H., of Duke University’s Sanford School of Public Policy, reported that in 2017, at-home deaths had edged out hospital deaths, 30.7% to 29.8%, for the first time since the early 20th century. But the trend comes at a time when families are scattered across the U.S., making caregiving logistically challenging. 

Meanwhile, advances in medical treatments and technology are helping people with terminal and chronic illnesses to live longer. Families, say palliative care physicians and hospice advocates, need help. More specifically, they want Medicare to increase its at-home hospice payment, which is currently $203 a day, and reconsider its policy that limits hospice coverage to people with a life expectancy of less than six months. As the difference between curative and comfort care becomes more nebulous, some experts and advocates also want Medicare to reconsider the rules that require hospice patients to forgo curative treatments that may help relieve symptoms.

“What we really need is for the hospice benefit that was defined and implemented over 40 years ago to be redefined and delivered in a way that meets the needs of those who experience serious illness and end of life today,” says Ben Marcantonio, M.S., M.Ed., LMFT, chief operating officer for the National Hospice and Palliative Care Organization (NHPCO).

Medicare coverage of hospice was, by design, rather limited. Changing it now to be more responsive to 21st-century needs — especially care at home — is likely to be expensive. Lawmakers may be shocked by the price tag. But hospice advocates believe the money can be found. As a country, America spends an estimated $80,000 a year per person for medical care in the last year of life. Compare that with the current cap of $31,297.61 per year per person on Medicare hospice payments. Could some of that money be used to help families who want to bring their loved ones home to die? Drutchas thinks it could.

It is heartbreaking, she says, to see patients — with their families in agreement — who want to die at home but don’t for a number of reasons. “I don’t think it feels good to be part of a system that can’t meet patient needs,” she says.

According to the Medicare Payment Advisory Commission’s (MedPAC) 2022 Report to the Congress, the main hospice location for 47% of the Medicare beneficiaries who received hospice care in 2020 was someplace other than at home: a nursing home, assisted living facility, hospital, or hospice facility. The report also showed how the use — and cost — of hospice services have risen steadily in the last decade. Between 2010 and 2020, spending grew 5.7% annually, going from $12.9 billion to $22.4 billion. Between 2019 and 2020 alone, spending rose 7.4%, largely reflecting the number of people using hospice.

In 2020 Medicare was the largest payer of hospice services, covering 90% of all patient days for 1.7 million beneficiaries deemed terminally ill with a life expectancy of six months. That year, $500 million went to 5,058 hospice providers, a 4.5% increase in hospice providers over the previous year. The entire increase, according to CMS, came from for-profit companies rushing into the provision of hospice services. In 2020, 73% (3,680 of 5,058) of hospice providers are for-profit businesses, according to the 2022 MedPAC report.

By definition, for-profit hospice providers are moneymaking ventures with an eye to delivering a return for investors or shareholders. Medicare’s daily rate makes for tight margins. That concerns Mass General’s Drutchas. “If you are for-profit and you only get $203 a day, then what you could theoretically do is think about picking and choosing the patients with fewer physical needs so that you don’t spend your resources on them and get to keep more of that money,” she says.

NHPCO’s Marcantonio understands, saying that the influx of for-profit hospices has been a “challenge” for the healthcare field and his industry. But for-profit and quality, he says, are reenforcing, not mutually exclusive.

“As a for-profit provider, if we are not quality, we won’t be able to be successful financially or otherwise,” he says. “So, we had better be committed to quality.”

NHPCO has implemented a program focused on a commitment to quality among its members. There are also several accrediting organizations that oversee the industry, including Medicare.

The $500 million that Medicare spent on hospice care in 2020 (and the money that it spends every year) pays for physician services, nursing care, counseling and social worker services, hospice aides and homemaker services. Medicare funds also pay for care planning, drugs, medical equipment, a 24-hour call center, crisis response and transporting patients between sites for care.

The organizations and companies that provide hospice services receive daily payment from Medicare every day a patient is enrolled in a hospice program. Patients get, on average, just three to five hours of in-person care a week. But Marcantonio stresses that is an average. Visits are “determined by the needs of that patient at that given time,” he says. “When someone comes on the service, they may get 10 hours or more during the week to make sure they are set up well and that they are comfortable and have what they need. When their condition stabilizes and they reach a level of comfort, then it does go down to three to five hours a week.”

The amount of the daily payment to hospice organizations or companies depends on where they fall among Medicare’s four levels of care: routine home care, continuous home care, respite care and general inpatient care. Routine home care is reimbursed at $203 a day for 60 days and then drops to $161 daily for up to six months. Starting this year, hospice providers are eligible for additional payments for registered nurses and social worker visits during the last seven days for patients in the routine home care category. The hourly payments are for up to four hours a day of care and are on top of base payment rate. The visits must be in person.

Continuous home care is layered on top of routine home care. A hospice worker is paid $61 an hour to be on site for eight to 24 hours to provide nursing care during brief periods of crisis to, for example, manage pain or other acute symptoms. The stated purpose of continuous care is to keep the person at home.

Respite care, designed to give the patient’s primary caregiver time off, is reimbursed at $474 a day. The current Medicare payment for general inpatient care is $1,068 a day and applies to hospice care delivered in a hospital, hospice inpatient facility or nursing home.

Less than 2% of all hospice care is delivered in an inpatient circumstance, Melissa Wachterman, M.D., M.P.H., noted during a recent a 

 podcast. A palliative care physician and an assistant professor at Brigham and Women’s Hospital in Boston, Wachterman agrees that dying at home is the best option for many patients and their families and that “a lot of good comes from hospice.” But she is concerned that the decision to send someone home to die isn’t always best for the patient, despite the strong, overall preference.

“Hospitals get paid based on the diagnostic risk group, where they get a lump sum of money for a patient regardless of how long they stay in the hospital,” Wachterman said during the podcast. “So, if stays are shorter, they can save money, and oftentimes home is one of the easiest discharge destinations for a patient. Sending a patient home can save hospitals and Medicare money because it shifts the burden of around-the-clock care and out-of-pocket expenses to families and is paid out at the much lower routine home care rate.”

Dying in a hospital or at an inpatient hospice facility, she added, may be the better choice for families. Both offer support from nurses and aides who can respond quickly to issues like pain, incontinence or delirium, all common as death nears. The stereotype of someone dying in a hospital, hooked up to machines with monitors continually beeping, isn’t accurate, as a hospital death can be very peaceful, Wachterman said. “In these settings, patient families can focus on quality time together, which becomes more important where there isn’t a lot of time.”

Wachterman would like to see Medicare increase financial support for families. She said the Department of Veteran Affairs and some state Medicaid programs that pay for family caregiving are setting a good example. She also wants to see easier access for inpatient hospice because, she believes, it is the best option for some families. In Wachterman’s view, people who have severe symptoms and need great deal of care are strong candidates for inpatient care.

Drutchas agrees that everyone should have an option about where they want to die, including those who want to spend their final days at home but don’t have the necessary support network.

“It should be an option for everyone, not just those who have the money to pay for private care or those who are blessed to have multiple family members and friends in the exact geographic location who can help with that 24-hour care,” she says.

The main issue Marcantonio would like to see addressed is Medicare’s requirement that a patient have a life expectancy of six months or less. “Is there a way to think about that and talk about that differently? Because these various illnesses and how they proceed is different,” he says. “There isn’t (always) a clear six-month prognosis. We need to evolve that in a thoughtful, meaningful way that is still efficient and uses our resources responsibly.” 

Robert Calandra is an independent journalist in the Philadelphia area.

Articles

Some experts want to see more funding for hospice care in the home. Others say the advantages of hospice in a hospital or nursing home have been underrated.


Reforming Hospice

Since its inception in 2012-2013, the CMS Medicare Shared Savings Program (MSSP) has cranked along like a roller coaster climbing steadily upward. Starting with 220 participating accountable care organizations (ACOs) and 3.2 million beneficiaries, it reached the high point in 2018 with 561 organizations covering 10.5 million people.

That was the same year that CMS unveiled Pathways to Success, its overhaul of MSSP’s ACO program aimed at increasing cost savings for the Medicare program by requiring more MSSP ACOs to assume two-sided risk: upside “shared savings” if they come in under budget for their attributed population but also downside “shared losses” if they go over it. The number of participating ACOs fell to 487.

Since then, the MSSP ACO program has oscillated between shallow valleys and modest peaks of ACO participation, growing by 30 organizations in 2020, losing 40 in 2021, and adding 6 this year. The number of beneficiaries covered has, though, held relatively steady with 11 million at the beginning of this year, or about one-third of the 33 million beneficiaries in traditional Medicare.

A number of factors contribute to those numbers, including the normal ebb and flow of ACOs joining and leaving the program and consolidation of providers. The winding down of another CMS ACO program, called Next Generation, had some ACOs looking for a new home.

Then there is what David Muhlestein, Ph.D., J.D., calls the “really big driver”: the COVID-19 pandemic.

“It has made people completely rethink what their priorities are, and anything related to ACOs is just so much less important right now,” says Muhlestein, chief strategy and chief research officer for Leavitt Partners, a healthcare consulting firm in Salt Lake City.

Jennifer Gasperini, director of regulatory and quality affairs for the National Association of ACOs (NAACOS) agrees that the pandemic and all those other issues are at play. But the way she sees it, Pathways is the main reason.

“We definitely think that Pathways has had an effect on the overall interest in the program,” she says. “Pathways decreased the incentive to participate by doing two things: reducing the shared savings that you can keep if you are successful and pushing (ACOs) to risk more quickly.”

Industry observers say it can take an ACO at least three years to get its sea legs. That timeline is about right, Muhlestein says. But CMS, he notes, is looking at a different timeline and issue: saving Medicare, a program under financial stress as it takes on the baby boom: “If you have a bunch of organizations that won’t take downside risk and will only stick around as long as there is a possibility of getting payment, can you say they are really making substantive changes to improve care and lower costs?”

Accelerating assumption of two-sided risk is the most important difference between the Pathways program implemented by the Trump administration and the original MSSP. Pathways sorted the prior MSSP’s multitrack options down to two, Basic and Enhanced, although the Basic Track has five stages. ACOs newly entering the Basic Track have a two-year period of upside-only risk and 40% shared savings. After that, they are on a three-year schedule of two-sided risk that dials up the shared-savings percentages but also creates greater exposure to shared losses.

The Enhanced Track puts ACOs right into two-sided risk with shared savings of 75% and shared losses of between 45% to 75%. But, importantly, the Enhanced Track also qualifies the ACO as an Advanced Alternative Payment Model, which makes it eligible for incentive payments under a different CMS program.

ACOs that were participating in MSSP prior to Pathways could enter the Basic Track at its various stages depending on their revenues, how long they had been participating in MSSP and other factors. According to a CMS report earlier this year, as of Jan. 1, 2022, 337 of the 483 (70%) ACOs in the Pathways version of MSSP were participating in the program’s Basic Track, and 190 (56%) of those were still in the two-year period of one-sided risk. The other 146 jumped right into the Enhanced Track.

Muhlestein is a fan of the Pathways effort to push ACOs into assuming two-sided risk sooner: “I think that making people move toward risk makes it real and requires them to think about things in a way they probably didn’t before,” he says. “I think, basically, it says quit experimenting and start doing, which is a major difference (from) what has happened in the past.”

The Pathways rules also changed some of the benchmarking methods used to set the financial goals of the ACOs and therefore their eligibility for shared savings and losses.

Although NAACOS generally approves of CMS’s benchmarking changes, the group is concerned about what Gasperini dubs the “rural glitch.” For instance, an ACO representing half the care in a smaller region may improve by 5% in a year. That means that, on average, the whole region improved by 2.5%. By exclusively comparing the ACO to its region, the ACO is literally competing against itself.

“This is about the idea of having to constantly kind of beat yourself,” Gasperini says. “That is one issue that we think, if changed, could really go a long way toward sustainability in the program.”

Pathways rules have some benefits for the participating ACOs. They can also permit the bypass some Medicare restrictions on telehealth services. (Because of the COVID-19 Public Health Emergency and its telehealth waivers, the telehealth perk hasn’t meant as much as it might have). Additionally, Pathways waives a Medicare rule that limits coverage of rehabilitation in a skilled nursing facility to beneficiaries who were discharged to the facility after three consecutive days in a hospital. The Pathway rules also allow ACOs to make $20 incentive payments to beneficiaries to take steps such as joining a wellness program that are believed to lower costs and reduce the risk of serious illness.

NAACOS has viewed the declining number of ACOS in MSSP with alarm. When the CMS released the figures earlier this year, NAACOS issued a press release that quoted its chief executive officer, Clif Gaus, Sc.D., M.H.A., as saying they showed a “shrinking of this important ACO model.” According to NAACOS, 18 of 46 new ACOs participating in the program are former Next Generation participants and so not really new ACOs.

Many of NAACOS’ concerns would be remedied if a bipartisan bill stalled in the House were to gain traction. Introduced in July 2021, the Value in Health Care Act of 2021 would bump MSSP’s Basic Track shared-savings rate back to 50% and give ACOs at least three years in the one-sided risk mode.

Meanwhile, NAACOS continues to meet with the Biden administration to discuss adjustments to MSSP ACO, including new incentives and grants that would help attract practices. The administration, Gasperini says, is “engaged with us and, I think, committed to value-based care, and hopes it or CMS, or Congress, will make some changes to Pathways before the end of the year. Now it’s really about putting pen to paper and making some of these changes so that we can see increased participation.”

Like Gasperini and NAACOS, others are also waiting to see which direction the Biden Administration takes with the ACO program.

“The big one is what is the Biden administration plan?” says Muhlestein. “That is really going to influence in the next couple of years how much activity takes place and how active people are. I would fully expect them to come up with a full plan, both from the (CMS) Innovation Center as well as CMS for the MSSP.”

The program implemented by the Trump administration is designed to put more Medicare Shared Savings Program ACOs into two-sided risk. An industry group has discouraged participation in the program.

ACO Update: The Pathways to Success Program

People with obesity are already at heightened risk for a number of serious illnesses: diabetes, heart disease, some cancers. Severe COVID-19 can now be added to that list. Especially concerning is research that shows the risk is high among young adults, ages 20 to 39.

“I would daresay that almost all of the patients that we have seen who were young and did very poorly were all significantly obese,” says Aaron Eli Glatt, M.D., chief of infectious diseases and the hospital epidemiologist at Mount Sinai South Nassau in Oceanside, New York. “I can’t say it was 100%. But there were medically significant risk factors in terms of having bad COVID(-19) in the hospital in your 30s. And we see this literally almost every day of the pandemic.” 

Glatt notes the difficulty of teasing out whether it is obesity itself that increases the risk of severe COVID-19 or the web of cardiovascular and metabolic disorders associated with being overweight or obese.

“I don’t know if we will ever have an absolute, definitive answer,” Glatt says. “But the overwhelming evidence certainly suggests that people who have obesity, whether that is the risk or not ... are far, far worse off if they have COVID-19. I don’t know how anybody can argue with that.”

The epidemiologic evidence of an association between obesity and severe COVID-19 and death is strong and not in dispute, at least during the early phase of the pandemic. A study published in March 2021 in the CDC’s 

 that included more than 148,000 U.S. adults who received a COVID-19 diagnosis in 2020 showed that just over half (50.8%) of those who were hospitalized had obesity (a body mass index, or BMI, of 30 or more) and that just under half (46.0%) of those who died had obesity.

It is not entirely understood why obesity would worsen COVID-19, but researchers have proposed a number of explanations. Several theories trace the risk to the properties of adipose tissue in people with obesity. In a patient with obesity, the proinflammatory cytokines normally released by adipose tissue become amplified, and that amplification may lead to dysregulated immune function and greater difficulty fending off infections.

Leptin is one of those cytokines, and people with obesity can develop leptin resistance that is similar to insulin resistance that induces chronic inflammation. Adipose tissue in obesity is also a source of interleukin 6, a cytokine that may contribute to the runaway inflammation of the “cytokine storm” that characterizes many severe cases of COVID-19.

There’s also a theory that adipose tissue acts as a kind of reservoir for the SARS-CoV-2 virus and therefore plays a role in viral shedding. The extra adipose tissue in a person who is obese may mean a bigger SARS-CoV-2 reservoir and even more shedding.

Other explanations about the association between obesity and severe COVID-19 center on obesity’s effect on lung function. Central adiposity — the accumulation of adipose tissue in the abdomen — can limit expansion of the lungs. As a result, the lungs do not take in as much air, and that, in turn, means less oxygen reaches the blood.

“We are still learning about COVID-19 and its interaction with adipose tissue,” says Katherine H. Saunders, M.D., an obesity specialist and an assistant professor of clinical medicine at Weill Cornell Medicine in New York. “There will likely be several mechanisms identified that explain the greater prevalence of severe disease among people with obesity.” 

Saunders mentions that the chronic inflammation associated with excess weight may make it harder for the immune system to protect the body against the SARS-CoV-2 virus and that individuals with obesity can have impaired lung function.

One way to view obesity and COVID-19 is as two epidemics combining and accentuating one other.

Obesity is a risk factor for severe COVID-19, and the pandemic has led to weight gain.

A Harris Poll last year found that 42% of Americans said they had gotten heavier since the pandemic started in early 2020 and that the average weight gains was 29 pounds (the median was 15). Almost certainly that means many people in the U.S. went from being overweight to obese. With that change may have come a higher risk for developing diabetes, hypertension and, possibly, severe COVID-19.

Of course obesity has been a problem in the U.S. long before the pandemic. According to a February 2020 report from the National Center for Health Statistics (NCHS), the prevalence of obesity among adults in the U.S. increased from 30.5% in 1990-2000 to 42.4% in 2017-2018. During that same span, the prevalence of severe obesity increased from 4.7% to 9.2%. Health researchers define severe obesity as a BMI of 40 or higher. Some data suggest, though, that the rate at which the prevalence of obesity has been growing is slowing down some.

The figures in that NCHS report foreshadow to some extent that that COVID-19 might be bad news for 20- to 39-year-olds. The prevalence of the obesity in that age group was 40%, which was not that much lower than the prevalence of 44.8% among middle-aged adults, ages 40 to 59, and the prevalence of 42.8% among older people, ages 60 or more. 

Obesity has been typically viewed through the lens of personal responsibility and individual choice. Attitudes are changing, but people with obesity are still viewed inaccurately as being lazy or undisciplined. For quite some time, public health officials and others have seen obesity differently. In 1948, the World Health Organization weighed in by classifying obesity as a disease. U.S. health officials were decades behind; 50 years later, the National Institutes of Health declared obesity a disease, followed in 2013 by the American Medical Association.

“Obesity is much more complex than most people realize,” says Saunders. “There are so many different pathways involved. We have learned so much in the last few decades,” says Saunders, the first physician to complete a fellowship in obesity medicine at the Comprehensive Weight Control Center at Weill Cornell Medicine. “There is exciting research happening right now. We have several very effective medications and there are even more in the pipeline.” 

The obesity subspecialty is growing, with more than 5,200 board-certified obesity physicians, according to Saunders. Still, too many healthcare providers, not trained in obesity medicine, continue to rely on the traditional diet and exercise regimens. Diet and exercise are the cornerstones of every weight loss program, Saunders says. But by themselves, they don’t work for everyone.

“When people with obesity try to lose weight with dietary strategies and they are not successful … they can and should seek medical treatment, because this is more than a lifestyle problem for most people and medical treatment is warranted,” says Saunders, a co-founder of Intellihealth, a company that provides a medical approach to obesity. “The most important thing is that obesity is not a lifestyle problem. It’s not about willpower. It is a complex disease.”

Obesity is associated with more than many comorbidities. It’s one reason why, prior to the pandemic, it was, by some accounts, the second-leading cause of preventable deaths in America, killing between 280,000 and 300,000 Americans each year.

Meanwhile, the evidence for the danger of the COVID-19/obesity combination continues to pile up, although comorbidities are also involved. For example, a study published in the September 2021 issue of 

 looked at 134,209 French adults admitted to hospitals with COVID-19. The authors concluded that “mortality was more frequent among patients with obesity and diabetes.” They also noted that intubation was three times more frequent among patients with obesity than among patients without.

Three months later, a retrospective cohort study published in the journal 

 echoed some of the French findings. The researchers combed through data on 66,000 patients with a COVID-19 diagnosis seen at 613 U.S. hospitals, 18.6% of whom died. Diabetes without chronic complications was not a risk factor for mortality, and hypertension without complications was only a risk factor in 20- to 39-year-olds. But diabetes with chronic complications, hypertension with chronic complications and obesity were risk factors at most ages and posed the greatest risk in the 20- to 39-year-old age group.

To avoid COVID-19 danger, Glatt tells patients — regardless of weight — to get vaccinated and boosted. But the recommendation is even stronger for people with obesity. “Obese people can have difficulty breathing because of the physical dynamics of their obesity,” says Glatt, referencing some of the current thinking about why severe COVID-19 is greater threat for people who are heavy. “They may not be in good shape and they don’t take deep breaths. Obesity can impair their immune function. There are so many complicating factors. It is extremely unusual that a patient is just obese and has no other medical problems.”

People with obesity may want to consider steps to lose the adiposity. “Begin to assess whether or not this is the weight you want to be at,” Glatt advises.

If one can think of a pandemic that is on its way to claiming a million American lives as having a silver lining, Saunders and her colleagues say that lining might be all the attention that obesity is getting as a bona fide health problem.

“Our mission is to make it clear to the medical community and beyond that obesity is something that is treatable and it is something that requires medical attention,” she says. “In terms of COVID-19, we do have evidence that treating obesity can reduce the risk of morbidity and mortality.”

A Dangerous Pairing: COVID-19 & Obesity - Heightened Risk for COVID-19 Severity

As the COVID-19 pandemic’s third winter continues, the omicron variant is still at rise, sweeping the U.S., swamping understaffed emergency departments and filling hospital beds.

If there is a glimmer of good news, it’s that the omicron version of the SARS-CoV-2 virus that causes COVID-19 seems less virulent with far fewer hospitalizations and deaths as a proportion of cases. But it’s also now clear that an impressive number of people who have had COVID-19 will likely have what the National Institutes of Health calls “post-acute sequelae of SARS-CoV-2 infection (PASC),” more commonly called “long COVID.” It is too soon to tell, though, whether cases caused by the omicron variant will result in long-term health problems.

The CDC defines long COVID as “a range of symptoms that can last weeks or months after first being infected with the virus that causes COVID-19 or can appear weeks after infection.” Long COVID can happen to anyone who has had COVID-19, says the CDC, even if their illness was mild or asymptomatic.

If a batch of new studies is correct, that “anyone” could be up to half of all COVID-19 survivors. That means millions of Americans, and perhaps 100 million people worldwide, will live with the lingering, in some cases debilitating, aftereffects of the novel respiratory virus.

“I am seeing people now who have gotten COVID a second time,” says Gary Rogg, M.D., co-director of the Post-COVID-19 Recovery Program for the Westchester Medical Center Health Network in New York. “Those who have long-hauler, post-COVID symptoms the first time will be remarkably worse again.”

“Long hauler” — that was the sobriquet for cross-country truckers. Not anymore. Today it’s anyone who is experiencing any of an array of post-COVID-19 symptoms: fatigue, cough, shortness of breath, chest pain, kidney dysfunction, joint stiffness, loss of smell and taste, and headache. Long-haulers also report a variety of emotional and neurological symptoms, including “brain fog,” which includes difficulty concentrating, memory loss, anxiety and depression.

Early in the pandemic, when researchers and doctors were struggling to get a handle on the virus, few understood that symptoms could persist after the virus had cleared the body. Instead, they told patients who reported the symptoms that it was all in their head.

“A lot of physicians pooh-poohed patients,” Rogg says. “People got very, very distressed about that. We’re finding in a lot of people that it creates a reactive depression and creates anxiety, almost like post-traumatic stress disorder.” 

Researchers are now doing work to understand the causes of long COVID. Older people and those who were hospitalized for COVID-19 seem to be at greater risk of lingering disease, but young people with milder cases also experience long COVID. It is not as simple as age and hospitalization causing long COVID.

Susan Vehar, M.D., a pulmonologist at Cleveland Clinic, and her colleagues published an article in the 

 about long COVID. They noted that the sickest, hospitalized patients had the highest prevalence of protracted symptoms of long COVID, citing research that has found that more than two-thirds of these patients have continued symptoms six months after recovery from acute COVID-19. The article also cites studies from Italy and Michigan showing that two-thirds of patients recovering from COVID-19 had symptoms 60 days after the acute infection was over. 

The Italian study found that only 18 of 143, or 13%, of patients were “completely free” of aftereffects from an acute case of COVID-19. In the Michigan study, the risk of the long COVID was higher among previously hospitalized patients versus those seen on an outpatient basis, and long COVID was twice as likely in patients with severe symptoms at 30 days. But the researchers also found that 20% of otherwise healthy young people, ages 18 to 34 years, with no previous chronic illnesses and mild COVID-19 cases, experienced long-haul symptoms.

Vehar and her colleagues mentioned that other studies have shown at least one persistent COVID-19 symptom, most commonly fatigue or dyspnea, in more than half of patients after 110 days or 180 days, suggesting the possible duration of long COVID has yet to be determined.

Meanwhile, a meta-analysis of 40 studies from 17 countries conducted by researchers at the University of Michigan School of Public Health published as a preprint in November 2021 found that 43% of COVID-19 patients who were not hospitalized, and 57% who were, had long COVID symptoms.

Rogg says most patients experience fatigue. The second most common complaint is brain fog. “They describe it like someone waking you from a really deep sleep and they ask you a question,” he explains. “You know who they are, you’re aware of what is going on, but getting the answer out is the problem.”

So far, the best theory about what causes long COVID is that the virus tricks the immune system into creating or activating autoantibodies that mistakenly target the body’s own tissue.

“One of the things we hear from everybody is that there is this wave-like pattern” says Rogg. “They feel like they are getting better and then it feels like it starts all over again. As time goes by those peaks, feeling miserable, do get a little bit less, and the frequency of the wave also gets less.”

In a preprint, researchers from the National Institutes of Health said they found COVID-19 in almost every organ, including brain tissue from autopsied patients who died from the disease. If the findings hold up, they suggest that the virus can cross the blood-brain barrier.“ Even if the leading theory (about brain fog) is that it is caused by an inflammatory response of the brain, the question then is: Why is (the brain) having an inflammatory response?” Rogg asks. “The idea is, of course, that the virus gets in there.”

Treatment for long COVID at the Westchester recovery program depends on the individual’s symptoms. Patients are first examined and evaluated, including cardiac, pulmonary, and neurological tests. Those complaining of fatigue are treated with anti-inflammatory agents like naproxen, ibuprofen and, in some cases, steroids to quiet the immune system response. 

Those for whom concentration is an issue are given puzzles, word scrambles and crossword puzzles, while patients with chest pain or breathing complaints enter a carefully monitored, graded rehab program. For every patient, the care involves managing expectations, says Rogg. 

“I tell them, ‘Do not focus day to day,’” he says. “I tell them to look back every week or two and see how they feel compared to a month ago. If you can get people to refocus that way, they will come back and say, ‘I’m not good yet, but I’m better than I was a month ago,’ then you start to see that glimmer of hope in their eyes.”

“Long COVID” is more likely to affect older people and those who have been hospitalized, but younger people with milder symptoms are not immune to lingering symptoms. One plausible explanation is that the infection results in the activation of autoantibodies.

No Giving It Short Shrift: COVID-19 Can Be a Long Haul 

Maintaining optimal levels of low-density lipoprotein (LDL) cholesterol from early adulthood through middle age may reduce the risk of developing coronary heart disease later in life, results of a recent study show.

LDL cholesterol levels usually can be kept low through exercise, a heart-healthy diet and other lifestyle modifications, according to the study’s authors. But for young adults with high LDL levels that don’t respond to lifestyle changes, cholesterol-lowering statin drugs may be necessary.

“For these individuals, pharmacological therapy to lower LDL cholesterol levels earlier in the life course when atherosclerosis is less advanced may be a more successful way to reverse the disease course and prevent future CVD (cardiovascular) events,” Yiyi Zhang, Ph.D., M.S., of Columbia University Medical Center and her co-authors wrote in the September 2021 issue of JAMA Cardiology. If clinicians were to follow their suggestions, many more Americans could be taking statins starting at much younger age.

Lowering LDL cholesterol, often by taking a statin, has been a tenet of cardiovascular disease prevention in the United States for decades, but most of the prescriptions are written for older people with a history of heart attack, stroke or another major cardiovascular event.

The editor’s note accompanying the study noted that current hypertension guidelines recommend treating all adults with high blood pressure despite a dearth of evidence that lowering blood pressure in young adults translates into a health benefit. “If the clinical community can support treating hypertension early in life to prevent the long-term risks of elevated blood pressure, the findings in the study by Zhang et al. suggest that a similar paradigm (for cholesterol lowering) should be considered,” wrote Ann Marie Navar, M.D., Ph.D., and Gregg C. Fonarow, M.D., associate editors at 

But the emphasis that has been put on LDL cholesterol levels also has been questioned. Rita F. Redberg, M.D., a cardiologist at the University of California, San Francisco, and editor of 

, has said that an LDL cholesterol level should be seen as marker of potential cardiovascular disease rather than a target for treatment. Speaking on the Healthy Skeptic MD podcast earlier this year, Redberg said focusing on LDL cholesterol is “misguided.” Instead, she said, doctors should instruct patients to eat a healthy diet and get regular physical activity. “If you have a healthy diet and your cholesterol is high, that’s OK,” she said. “If you have an unhealthy diet and your cholesterol is low, that’s not so good. You really have to focus on lifestyle and stop focusing on lab values.” Redberg also said that the side effects of statins — muscle aches, fatigue — may actually contribute to heart health issues.

By pooling four prospective cohort studies, the study researchers had data from more than 18,000 study participants to evaluate. Using accepted statistical techniques, they calculated the participants’ cumulative exposure to cholesterol levels. The study results suggest that exposure to high levels was associated with a greater likelihood of experiencing coronary heart disease but not stroke or heart failure.

Zhang and her colleagues discussed possible explanations for cumulative high LDL cholesterol levels increasing the likelihood of coronary heart disease. Small particles of LDL cholesterol may lodge inside arterial walls starting in young adulthood. Some research suggests that those retained particles go through various modifications, including oxidation, which can lead to an inflammatory response and vascular injury and atheroma formation. The accumulated particles, teaming up with circulating LDL cholesterol, may develop atherosclerotic plaque. Thus, keeping LDL cholesterol levels low may prevent that process from starting.

Introduced in 1987, statins are among the most prescribed medications in the world. They are routinely prescribed for patients 55 and older who have had a heart attack or stroke or who have elevated LDL cholesterol levels. Prescribing statins for younger adults was mentioned by the American College of Cardiology and the American Heart Association in their 2019 guidelines on the primary prevention of cardiovascular disease. The guidelines say for young and middle-aged adults, the 30-year and lifetime risk of cardiovascular disease are reasons for reinforcing a lifestyle recommendation and, for some, medication. Still, the vast majority of statin prescriptions are written for older patients. Zhang’s study is far from the final word on prescribing statins for younger people, but it may seed more research and discussion of looking at LDL
cholesterol through the lens of lifetime exposure.

is an independent journalist in the Philadelphia area who writes about healthcare and other topics.

Treating high levels of low-density lipoprotein cholesterol in young people may reduce lifetime exposure and lead to fewer cases of coronary heart disease. 

Seeing LDL Cholesterol in a New Light

When Terri Kirkpatrick, a community health worker, meets a new client, the first question she asks is, “how are you feeling today?”

The question isn’t just an icebreaker. It’s laying the foundation for the relationship Kirkpatrick hopes to build with her clients. She knows how vulnerable and anxious women coming into Strong Beginnings feel. She was once a client of the program for pregnant Black mothers with behavioral health needs.

“I can truly say that I was born to be community health worker,” Kirkpatrick says, adding that she has an experiential understanding of the disparities the program’s clients live with.

Kirkpatrick has been a Strong Beginnings community health worker for 23 years. The program, a partnership between Spectrum Health, a Michigan-based managed care organization, and nine community organizations, facilitates home visits by nurses, nutritionists and community health workers.

Like most community health workers, Kirkpatrick has a job that takes her outside the traditional boundaries of healthcare. She helps the women in the program with whatever needs they might have, including food and housing, job and career support. “Whatever their priority is, that’s what I focus on,” she says. “I’m here for them.”

The community health worker model has been around, in one form or another, for 100 years, says Scott Tornek, chief strategy officer for the Penn Center for Community Health Workers at the Penn Medicine. “It’s not a new concept,” says Tornek. “It has gone through boom-and-bust cycles for decades.”

Now it is booming. It started after passage of the ACA in 2010 and the subsequent move toward risk-based contracts that create incentives to reduce the cost of care and prevent illness. According to the CDC, more than 23 states have or are considering community health worker programs.

Yet community health workers have not been fully embraced by the U.S. healthcare system. Even if they result in overall savings, the programs can be expensive to operate. Pilot projects may get off to a good start but then shut down when the funding runs out.

But many experts, physicians and healthcare executives see the community health workers as a way to deal with much-talked-about social determinants of health. The question, then, concerns how hospitals, health systems, payers and government health officials can make community health workers part of the everyday reality of American healthcare. “It’s a complicated question,” Tornek says. “But I think it starts with sustainable funding, especially for Medicaid and for people who are underserved — marginalized people who are in those insurance groups.”

About a decade ago, Shreya Kangovi, M.D., M.S., a pediatrician caring for patients in West Philadelphia, asked herself that same question. In the ensuing years, Kangovi, along with a team of researchers from the Perelman School of Medicine at the University of Pennsylvania, created the Individualized Management for Patient-Centered Targets, or IMPaCT, program. Some key aspects of IMPaCT were developed based on interviews with more than 1,500 patients. Each was asked what was stopping them from staying healthy. The answers: food, housing, transportation and other problems. Next, an operational program was designed. Kangovi and her colleagues tested IMPaCT in randomized controlled trials and published the results.

Tornek says the key to the program’s success is hiring the right people. “We look for people who reflect the patients we serve, who are from the same communities, who have shared life experiences, who are naturally empathetic, who are good listeners, and who will bring food to a neighbor in need who is sick,” Tornek says. “You can’t train for that.”

The IMPaCT program involves training community health worker managers, most of whom have a background in social work. The program integrates community health workers with the patient’s care team. Patient satisfaction with IMPaCT is high, Tornek says, and employee turnover is a low 2%.

Community health worker salaries can vary. In large cities, starting salaries range from the high-$20,000s to the mid-$30,000s. An experienced community health worker can make up to $52,000 a year, according to the website Explorehealthcarecareers.org.

“The community health worker quarterbacks the nonclinical and nonmedical relationship with the patient,” Tornek says. “The community health worker in our model helps patients set and achieve their goals to get back on track quickly. How does that translate into health? It could be controlling their diabetes by shopping for healthier foods so they stay out of the hospital.” 

Three controlled, randomized studies showed positive results. But a study showing that community health workers could save money had not been done. That changed in February 2020, when Kangovi, now the executive director of the Penn Center, reported results in 

. The study followed 302 patients considered at high risk for health problems between July 2013 and October 2014.

The patients were randomly divided: 150 in an intervention group that received services from the community health workers and 152 in a control group. All patients came from “high-poverty neighborhoods” and each had at least two chronic diseases. At the study’s one-year follow-up, 98 patients in the control group had been hospitalized, compared with 68 patients in the intervention group. The total inpatient and outpatient bill for intervention patients was about $ 2.5 million compared with $3.9 million for the control group. Kangovi and her co-investigators reported that the team of community health workers saved Medicaid $1.4 million. They calculated that the savings divided by program expenses ($567,950.82) yielded a return on investment within a single fiscal year of $2.47 for every dollar invested.

Over the past seven years, IMPaCT and Penn Center’s 30 community health workers have seen 13,000 patients. Depending on the goals they are trying to achieve, most patients work with program’s community health workers for three to six months. Some return, but most don’t.

Penn has exported its IMPaCT program to 20 states and 50 healthcare organizations, large health systems, payers, nonprofit organizations and departments of health. The adopters include ChristianaCare in Delaware, BJC HealthCare in St. Louis and Blue Cross Blue Shield of North Carolina.

But even successful programs like Penn Center and Strong Beginnings are constantly concerned about funding. Strong Beginnings runs on an annual budget of $2 million and includes funding from federal and state sources plus a $500,000 contribution from Spectrum Health. Penn Center does not publish its annual budget, but Tornek says the organization’s external work is self-funded and that Penn Medicine pays for the patients it refers. “We are doing a lot with pretty limited resources, quite frankly,” Tornek says.

Community health worker programs need to be on a firm financial footing to help vulnerable patients and reduce admissions, Tornek says. He would like to see Congress and the federal government’s various health agencies increase funding and help build a sustainable, long-term infrastructure to support community health programs.

“It’s a compressed question,” Tornek says. “There is institutional racism and health equity issues. How do we level the playing field? It’s a complicated question, but I think it starts with sustainable funding.”

Community health workers can address social determinants of health, and some programs have been shown to reduce healthcare costs.