Category: From California Healthline.org

GARDENA, Calif. — Daisy Conant, 91, thrives off routine.

One of her favorites is reading the newspaper with her morning coffee. But, lately, the news surrounding the coronavirus pandemic has been more agitating than pleasurable. “We’re dropping like flies,” she said one recent morning, throwing her hands up.

“She gets fearful,” explained her grandson Erik Hayhurst, 27. “I sort of have to pull her back and walk her through the facts.”

Conant hasn’t been diagnosed with dementia, but her family has a history of Alzheimer’s. She had been living independently in her home of 60 years, but Hayhurst decided to move in with her in 2018 after she showed clear signs of memory loss and fell repeatedly.

For a while, Conant remained active, meeting up with friends and neighbors to walk around her neighborhood, attend church and visit the corner market. Hayhurst, a project management consultant, juggled caregiving with his job.

Then COVID-19 came, wrecking Conant’s routine and isolating her from friends and loved ones. Hayhurst has had to remake his life, too. He suddenly became his grandmother’s only caregiver — other family members can visit only from the lawn.

[khn_two_photos photo-first=”353172″ photo-second=”353180″ /]
After their walk, Daisy Conant and her grandson rest in front of their home in Gardena, California.

The coronavirus has upended the lives of dementia patients and their caregivers. Adult day care programs, memory cafes and support groups have shut down or moved online, providing less help for caregivers and less social and mental stimulation for patients. Fear of spreading the virus limits in-person visits from friends and family.

These changes have disrupted long-standing routines that millions of people with dementia rely on to help maintain health and happiness, making life harder on them and their caregivers.

[khn_slabs slabs=”241884″ view=”inline”]

“The pandemic has been devastating to older adults and their families when they are unable to see each other and provide practical and emotional support,” said Lynn Friss Feinberg, a senior strategic policy adviser at AARP Public Policy Institute.

Nearly 6 million Americans age 65 and older have Alzheimer’s disease, the most common type of dementia. An estimated 70% of them live in the community, primarily in traditional home settings, according to the Alzheimer’s Association 2020 Facts and Figures journal.

People with dementia, particularly those in the advanced stages of the disease, live in the moment, said Sandy Markwood, CEO of the National Association of Area Agencies on Aging. They may not understand why family members aren’t visiting or, when they do, don’t come into the house, she added.

“Visitation under the current restrictions, such as a drive-by or window visit, can actually result in more confusion,” Markwood said.

Daisy Conant and grandson Erik Hayhurst chat with a family friend on a Zoom call. Hayhurst is using Zoom to keep his grandmother connected to family and friends.

The burden of helping patients cope with these changes often falls on the more than 16 million people who provide unpaid care for people with Alzheimer’s or other dementias in the United States.

The Alzheimer’s Association’s 24-hour Helpline has seen a shift in the type of assistance requested during the pandemic. Callers need more emotional support, their situations are more complex, and there’s a greater “heaviness” to the calls, said Susan Howland, programs director for the Alzheimer’s Association California Southland Chapter.

“So many [callers] are seeking advice on how to address gaps in care,” said Beth Kallmyer, the association’s vice president of care and support. “Others are simply feeling overwhelmed and just need someone to reassure them.”

Because many activities that bolstered dementia patients and their caregivers have been canceled due to physical-distancing requirements, dementia and caregiver support organizations are expanding or trying other strategies, such as virtual wellness activities, check-in calls from nurses and online caregiver support groups. EngAGED, an online resource center for older adults, maintains a directory of innovative programs developed since the onset of the COVID-19 pandemic.

They include pen pal services and letter-writing campaigns, robotic pets and weekly online choir rehearsals.

Gina Moran helps her mother, who was diagnosed with Alzheimer’s in 2007, put on her mask. Gina Moran sometimes has trouble getting her mother to wear the mask.
Alba Moran must be reminded about the coronavirus pandemic when she is asked to wear her mask.

Hayhurst has experienced some rocky moments during the pandemic.

For instance, he said, it was hard for Conant to understand why she needed to wear a mask. Eventually, he made it part of the routine when they leave the house on daily walks, and Conant has even learned to put on her mask without prompting.

“At first it was a challenge,” Hayhurst said. “She knows it’s part of the ritual now.”

People with dementia can become agitated when being taught new things, said Dr. Lon Schneider, director of the Alzheimer’s Disease Research Center at the University of Southern California. To reduce distress, he said, caregivers should enforce mask-wearing only when necessary.

That was a lesson Gina Moran of Fountain Valley, California, learned early on. Moran, 43, cares for her 85-year-old mother, Alba Moran, who was diagnosed with Alzheimer’s in 2007.

“I try to use the same words every time,” Moran said. “I tell her there’s a virus going around that’s killing a lot of people, especially the elderly. And she’ll respond, ‘Oh, I’m at that age.’”

If Moran forgets to explain the need for a mask or social distancing, her mother gets combative. She raises her voice and refuses to listen to Moran, much like a child throwing a tantrum, Moran said. “I can’t go into more information than that because she won’t understand,” she said. “I try to keep it simple.”

[khn_two_photos photo-first=”353174″ photo-second=”353171″ /]

The pandemic is also exacerbating feelings of isolation and loneliness, and not just for people with dementia, said Dr. Jin Hui Joo, associate professor of psychiatry and behavioral sciences at the Johns Hopkins University School of Medicine. “Caregivers are lonely, too.”

When stay-at-home orders first came down in March, Hayhurst’s grandmother repeatedly said she felt lonesome, he recalled. “The lack of interaction has made her feel far more isolated,” he said.

To keep her connected with family and friends, he regularly sets up Zoom calls.

But Conant struggles with the concept of seeing familiar faces through the computer screen. During a Zoom call on her birthday last month, Conant tried to cut pieces of cake for her guests.

Moran also feels isolated, in part because she’s getting less help from family. In addition to caring for her mom, Moran studies sociology online and is in the process of adopting 1-year-old Viviana.

Right now, to minimize her mother’s exposure to the virus, Moran’s sister is the only person who visits a couple of times a week.

“She stays with my mom and baby so I can get some sleep,” Moran said.

Before COVID, she used to get out more on her own. Losing that bit of free time makes her feel lonely and sad, she admitted.

“I would get my nails done, run errands by myself and go out on lunch dates with friends,” Moran said. “But not anymore.”

Gina Moran juggles several roles. She is the full-time caregiver to both her mother and baby, and studies sociology online.

Health workers across the country looked on in horror when New York became the global epicenter of the coronavirus. Now, as physicians in cities such as Houston, Phoenix and Miami face their own COVID-19 crises, they are looking to New York, where the caseload has since abated, for guidance.

The Guardian sat in on a conversation with two emergency room physicians — one in New York and the other in Houston — about what happened when COVID-19 arrived at their hospitals.

Dr. Cedric Dark, Houston: When did you start worrying about how COVID-19 would impact New York?

Dr. Tsion Firew, New York: Back in February, I traveled to Sweden and Ethiopia for work. There was some sort of screening for COVID-19 in both places. On Feb. 22, I came to New York City, and nothing — no screening. At that point, I thought, “I don’t think this country’s going to handle this well.”

Dark: On Feb. 26, at a department meeting, one of my colleagues put coronavirus on the agenda. I thought to myself, “Why do we even need to bother with this here in Houston? This is in China; maybe it’s in Europe?”

Firew: On March 1, we had our first case in New York City, which was at my hospital. Fast-forward 15 days and I get a call saying, “Hey, you were exposed to COVID-positive patients.” I was told to stay home.

Dark: My anxiety grew as I saw what was happening in Italy, a country I’ve visited several times. I remember seeing images of people dying in their homes and mass graves. I started to wonder, “Is this what we’ll see over here? Are my colleagues going to be dying? Is this something that’s going to get me or my wife, who’s also an ER doctor? Are we going to bring it home to our son?”

In March, we repurposed our urgent care pod, which has eight beds, into our coronavirus unit. And for a while, that was enough.

Firew: In late March, health workers without symptoms were told to come back to work. It felt like a tsunami hit. I’ve practiced in very low-resource settings and even in a war zone, and I couldn’t believe what I was witnessing in New York.

The emergency department was silent — there were no visitors, and patients were very sick. Many were on ventilators or getting oxygen. The usual human interactions were gone. Everybody was wearing a mask and gowns and there were so many people who came to help from different places that you didn’t know who was who. I spent a lot more time on the phone talking to family members about end-of-life care decisions, conversations you’d normally have face-to-face.

In New York, the severity of the crisis really depended on what hospital you were at. Columbia has two hospitals — one at 168th and one at 224th — and the difference was night and day. The one on 224th is smaller and just across the bridge from the Bronx, which was hit hard by the virus.

There, people were dying in ambulances while waiting for care. The emergency department was overwhelmed with patients who needed oxygen. Its hallways were crowded with patients on portable oxygen tanks. We ran out of monitors and oxygen for the portable tanks. Staff members succumbed to COVID-19, exacerbating shortages of nurses and doctors.

My friends who work in Lower Manhattan couldn’t believe some of the things we saw.

Dark: I went to medical school at NYU and have a lot of friends in New York I was checking in with at the time. I thought that in Houston, a city that’s almost as big, we had the conditions for a similar crisis: It’s a large city with an international airport, it attracts a lot of business travelers, and thousands of people come here each March for the rodeo.

In late March, a guy about my age came into the hospital. It was the first day we got coronavirus tests. A few days later, a nurse texted me that the patient had tested positive. He hadn’t traveled anywhere — it was proof to me that we had community transmission in Houston before any officials admitted it.

You became infected, right?

Firew: In early April, I became sick, along with my husband. I never imagined that in 2020 I would be writing out a living will detailing my life insurance policy to my family. Walking from my bed to the kitchen would make my heart race; I often wondered: Is this when I drop dead like my patient the other day?

A few days before I got sick, the president had said that anybody who wanted a test could get one. But then I was on the phone with my workplace and with the department of health begging for a test.

It was also around that time that a brown-skinned physician who was about my age died from COVID-19. So I knew being in my mid-30s wouldn’t protect me. I was even more worried when my husband became ill because, as a Black man, his chances of dying from this disease were much higher than mine. We both recovered, but I still have some fatigue and shortness of breath.

When did cases pick up in Houston?

Dark: We saw a gradual increase in cases throughout April, but it stayed relatively calm because the city was shut down. The hospital was kind of a ghost town because no one was having elective procedures. Things were quiet until Texas reopened in May.

I remember when I lost my first COVID patient. He started to crash right in front of me. We started CPR and I ran the algorithms through my mind trying to think how we could bring him back, but kept ending up at the same conclusion: This is COVID and there’s nothing I can do.

It’s like serving on the front lines of a war. We initially struggled to find our own personal protective equipment while the hospitals worked to secure the supply chain. Although that situation has stabilized, a lot of patients who come in for non-COVID reasons wind up testing positive. COVID is everywhere.

Our patient population is heavily Latino and Black and, for a time, our hospital had some of the highest numbers of COVID cases among the nearly two dozen hospitals in the Texas Medical Center network. It’s revealed the fault lines of a preexisting issue in terms of inequities in health care.

As area hospitals fill up, they reallocate additional floors to COVID patients. Who knows, if we don’t get this under control, maybe one day the whole hospital will be COVID.

Firew: Now I’m just chronically angry. The negligence came from the top all the way down. Our leaders do not lead with evidence — we knew what was going to happen when states reopened so quickly.

Dark: Yeah, this was completely avoidable, had the governor [Texas Gov. Greg Abbott] decided not to open up the economy too fast.

How are things in New York now?

Firew: There have been several days where I’ve seen zero COVID cases. If I do see a case, it’s usually someone who has traveled from abroad or other states.

People are coming in for non-COVID reasons. Recently, a woman in her early 40s came in with a massive lesion on her breast. She’d started experiencing some pain three months ago, during the peak of the pandemic, and was too frightened to come to the hospital. To make matters worse, she didn’t have insurance and couldn’t afford the telehealth that many had access to.

By the time she made it to our hospital, the mass had metastasized to her spine and lungs. Even with aggressive treatment, she likely only has a few months to live. This is one of the many cases we’re seeing now that we are back to “normal” — complications of chronic illnesses and delayed diagnoses of cancer. The burden of the pandemic layered with a broken health care system.

Dr. Tsion Firew is an assistant professor of emergency medicine at Columbia University and special adviser to the minister of health of Ethiopia.

Dr. Cedric Dark is an assistant professor of emergency medicine at Baylor College of Medicine and a board member for Doctors for America.

This conversation was condensed and edited by Danielle Renwick.

This story was produced by Kaiser Health News, an editorially independent program of the Kaiser Family Foundation.

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation which is not affiliated with Kaiser Permanente.

USE OUR CONTENT

This story can be republished for free (details).

After terrorists slammed a plane into the Pentagon on 9/11, ambulances rushed scores of the injured to community hospitals, but only three of the patients were taken to specialized trauma wards. The reason: The hospitals and ambulances had no real-time information-sharing system.

Nineteen years later, there is still no national data network that enables the health system to respond effectively to disasters and disease outbreaks. Many doctors and nurses must fill out paper forms on COVID-19 cases and available beds and fax them to public health agencies, causing critical delays in care and hampering the effort to track and block the spread of the coronavirus.

“We need to be thinking long and hard about making improvements in the data-reporting system so the response to the next epidemic is a little less painful,” said Dr. Dan Hanfling, a vice president at In-Q-Tel, a nonprofit that helps the federal government solve technology problems in health care and other areas. “And there will be another one.”

There are signs the COVID-19 pandemic has created momentum to modernize the nation’s creaky, fragmented public health data system, in which nearly 3,000 local, state and federal health departments set their own reporting rules and vary greatly in their ability to send and receive data electronically.

Sutter Health and UC Davis Health, along with nearly 30 other provider organizations around the country, recently launched a collaborative effort to speed and improve the sharing of clinical data on individual COVID cases with public health departments.

But even that platform, which contains information about patients’ diagnoses and response to treatments, doesn’t yet include data on the availability of hospital beds, intensive care units or supplies needed for a seamless pandemic response.

The federal government spent nearly $40 billion over the past decade to equip hospitals and physicians’ offices with electronic health record systems for improving treatment of individual patients. But no comparable effort has emerged to build an effective system for quickly moving information on infectious disease from providers to public health agencies.

In March, Congress approved $500 million over 10 years to modernize the public health data infrastructure. But the amount falls far short of what’s needed to update data systems and train staff at local and state health departments, said Brian Dixon, director of public health informatics at the Regenstrief Institute in Indianapolis.

The congressional allocation is half the annual amount proposed under last year’s bipartisan Saving Lives Through Better Data Act, which did not pass, and much less than the $4.5 billion Public Health Infrastructure Fund proposed last year by public health leaders.

“The data are moving slower than the disease,” said Janet Hamilton, executive director of the Council of State and Territorial Epidemiologists. “We need a way to get that information electronically and seamlessly to public health agencies so we can do investigations, quarantine people and identify hot spots and risk groups in real time, not two weeks later.”

The impact of these data failures is felt around the country. The director of the California Department of Public Health, Dr. Sonia Angell, was forced out Aug. 9 after a malfunction in the state’s data system left out up to 300,000 COVID-19 test results, undercutting the accuracy of its case count.

Other advanced countries have done a better job of rapidly and accurately tracking COVID-19 cases and medical resources while doing contact tracing and quarantining those who test positive. In France, physicians’ offices report patient symptoms to a central agency every day. That’s an advantage of having a national health care system.

“If someone in France sneezes, they learn about it in Paris,” said Dr. Chris Lehmann, clinical informatics director at UT Southwestern Medical Center in Dallas.

Coronavirus cases reported to U.S. public health departments are often missing patients’ addresses and phone numbers, which are needed to trace their contacts, Hamilton said. Lab test results often lack information on patients’ races or ethnicities, which could help authorities understand demographic disparities in transmission and response to the virus.

Last month, the Trump administration abruptly ordered hospitals to report all COVID-19 data to a private vendor hired by the Department of Health and Human Services rather than to the long-established reporting system run by the Centers for Disease Control and Prevention. The administration said the switch would help the White House coronavirus task force better allocate scarce supplies.

The shift disrupted, at least temporarily, the flow of critical information needed to track COVID-19 outbreaks and allocate resources, public health officials said. They worried the move looked political in nature and could dampen public confidence in the accuracy of the data.

An HHS spokesperson said the transition had improved and sped up hospital reporting. Experts had various opinions on the matter but agreed that the new system doesn’t fix problems with the old CDC system that contributed to this country’s slow and ineffective response to COVID-19.

“While I think it’s an exceptionally bad idea to take the CDC out of it, the bottom line is the way CDC presented the data wasn’t all that useful,” said Dr. George Rutherford, a professor of epidemiology at the University of California-San Francisco.

The new HHS system lacks data from nursing homes, which is needed to ensure safe care for COVID patients after discharge from the hospital, said Dr. Lissy Hu, CEO of CarePort Health, which coordinates care between hospitals and post-acute facilities.

Some observers hope the pandemic will persuade the health care industry to push faster toward its goal of smoother data exchange through computer systems that can easily talk to one another — an objective that has met with only partial success after more than a decade of effort.

The case reporting system launched by Sutter Health and its partners sends clinical information from each coronavirus patient’s electronic health record to public health agencies in all 50 states. The Digital Bridge platform also allows the agencies for the first time to send helpful treatment information back to doctors and nurses. About 20 other health systems are preparing to join the 30 partners in the system, and major digital health record vendors like Epic and Allscripts have added the reporting capacity to their software.

Sutter hopes to get state and county officials to let the health system stop sending data manually, which would save its clinicians time they need for treating patients, said Dr. Steven Lane, Sutter’s clinical informatics director for interoperability.

The platform could be key in implementing COVID-19 vaccination around the country, said Dr. Andrew Wiesenthal, a managing director at Deloitte Consulting who spearheaded the development of Digital Bridge.

“You’d want a registry of everyone immunized, you’d want to hear if that person developed COVID anyway, then you’d want to know about subsequent symptoms,” he said. “You can only do that well if you have an effective data system for surveillance and reporting.”

The key is to get all the health care players — providers, insurers, EHR vendors and public health agencies — to collaborate and share data, rather than hoarding it for their own financial or organizational benefit, Wiesenthal said.

“One would hope we will use this crisis as an opportunity to fix a long-standing problem,” said John Auerbach, CEO of Trust for America’s Health. “But I worry this will follow the historical pattern of throwing a lot of money at a problem during a crisis, then cutting back after. There’s a tendency to think short term.”

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation which is not affiliated with Kaiser Permanente.

USE OUR CONTENT

This story can be republished for free (details).

Mayra Ramirez remembers the nightmares.

During six weeks on life support at Northwestern Memorial Hospital in Chicago, Ramirez said, she had terrifying nightmares that she couldn’t distinguish from reality.

“Most of them involve me drowning,” she said. “I attribute that to me not being able to breathe, and struggling to breathe.”

On June 5, Ramirez, 28, became the first known COVID-19 patient in the U.S. to undergo a double lung transplant. She is strong enough now to begin sharing the story of her ordeal.

Mysterious Exposure

Before the pandemic, Ramirez worked as a paralegal for an immigration law firm in Chicago. She enjoyed walking her dogs and running 5K races.

Ramirez had been working from home since mid-March, hardly leaving the house, so she has no idea how she contracted the coronavirus. In late April, she started experiencing chronic spasms, diarrhea, loss of taste and smell, and a slight fever.

“I felt very fatigued,” Ramirez said. “I wasn’t able to walk long distances without falling over. And that’s when I decided to go into the emergency room.”

From the ER to a Ventilator

The staff at Northwestern checked her vitals and found her oxygen levels were extremely low. She was given 10 minutes to explain her situation over the phone to her mother in North Carolina and appoint her to make medical decisions on her behalf.

Ramirez knew she was about to be placed on a ventilator, but she didn’t understand exactly what that meant.

“In Spanish, the word ‘ventilator’ — ventilador — is ‘fan,’ so I thought, ‘Oh, they’re just gonna blow some air into me and I’ll be OK. Maybe have a three-day stay, and then I’ll be right out.’ So I wasn’t very worried,” Ramirez said.

In fact, she would spend the next six weeks heavily sedated on that ventilator and another machine — known as ECMO, or extracorporeal membrane oxygenation — pumping and oxygenating her blood outside of her body.

One theory about why Ramirez became so sick is that she has a neurological condition that is treated with steroids, drugs that can suppress the immune system.

By early June, Ramirez was at risk of further decline. She began showing signs that her kidneys and liver were starting to fail, with no improvement in her lung function. Her family was told she might not make it through the night, so her mother and sisters caught the first flight from North Carolina to Chicago to say goodbye.

When they arrived, the doctors told Ramirez’s mother, Nohemi Romero, that there was one last thing they could try.

Ramirez was a candidate for a double lung transplant, they said, although the procedure had never been done on a COVID patient in the U.S. Her mother agreed, and within 48 hours of being listed for transplant, a donor was found and the successful procedure was performed on June 5.

At a recent news conference held by Northwestern Memorial, Romero shared in Spanish that there were no words to describe the pain of not being by her daughter’s side as she struggled for her life.

She thanked God all went well, and for giving her the strength to make it through.

‘I Just Felt Like a Vegetable’

Dr. Ankit Bharat, Northwestern Medicine’s chief of thoracic surgery, performed the 10-hour procedure.

“Most patients are quite sick going into [a] lung transplant,” Bharat said in an interview in June. “But she was so sick. In fact, I can say without hesitation, the sickest patient I ever transplanted.”

Bharat said most COVID-19 patients will not be candidates for transplants because of their age and other health conditions that decrease the likelihood of success. And early research shows that up to half of COVID patients on ventilators survive the illness and are likely to recover on their own.

But for some, like Ramirez, Bharat said, a transplant can be a lifesaving option of last resort.

When Ramirez woke up after the operation, she was disoriented, could barely move her body and couldn’t speak.

“I just felt like a vegetable. It was frustrating, but at the time I didn’t have the cognitive ability to process what was going on,” Ramirez said.

She recalled being sad that her mother wasn’t with her in the hospital, not understanding that visitors weren’t allowed because of the pandemic.

Her family had sent photos to post by her hospital bed, and Ramirez said she couldn’t recognize anyone in the pictures.

“I was actually sort of upset about it, [thinking,] ‘Who are these strangers and why are their pictures in my room?’” Ramirez said. “It was weeks later, actually, that I took a second look and realized, ‘Hey, that’s my grandmother. That’s my mom and my siblings. And that’s me.”

After a few weeks, Ramirez said, she finally understood what happened to her. When COVID-19 restrictions loosened at the hospital in mid-June, her mother was finally able to visit.

“The first thing I did was just tear up,” Ramirez said. “I was overjoyed to see her.”

The Long Road to Recovery

After weeks of inpatient rehabilitation, Ramirez was discharged home. She’s now receiving in-home nursing assistance as well as physical and occupational therapy, and she’s working on finding a psychologist.

Ramirez eagerly looks forward to being able to spend more time with her family, her boyfriend and her dogs and serving the immigrant community through her legal work.

But for now, her days are consumed by rehab. Her doctors say it will be at least a year before she can function independently and be as active as before.

Ramirez is slowly regaining strength and learning how to breathe with her new lungs.

She takes more than 17 pills, four times a day, including medicines to prevent her body from rejecting the new lungs. She also takes anxiety meds and antidepressants to help her cope with daily nightmares and panic attacks.

The long-term physical and mental health tolls on Ramirez and other COVID-19 survivors remain largely unknown, since the virus is so new.

While most people who contract the virus are left seemingly unscathed, for some patients, like Ramirez, the road to recovery is full of uncertainty, said Dr. Mady Hornig, a physician-scientist at the Columbia University Mailman School of Public Health.

Some patients can experience post-intensive care syndrome, or PICS, which can consist of depression, memory issues and other cognitive and mental health problems, Hornig said. Under normal circumstances, ICU visits from loved ones are encouraged, she said, because the human interaction can be protective.

“That type of contact would normally keep people oriented … so that it doesn’t become as traumatic,” Hornig said.

Hopes for the Future

COVID-19 has disproportionately harmed Latino communities, as Latinos are overrepresented in jobs that expose them to the virus and have lower rates of health insurance and other social protections.

Ramirez has health insurance, although that hasn’t spared her from tens and thousands of dollars’ worth of medical bills.

And even though she still ended up getting COVID-19, she counts herself lucky for having a job that allowed her to work from home when the pandemic struck. Many Latino workers don’t have that luxury, she said, so they’re forced to risk their lives doing low-wage jobs deemed essential at this time.

Ramirez’s mother is a breast cancer survivor, making her particularly vulnerable to COVID-19. She had been working at a meatpacking plant in North Carolina, for a company that Ramirez said has had hundreds of COVID-19 cases among employees.

So Ramirez is relieved to have her mom in Chicago, helping take care of her.

“I’m glad this is taking her away from her position,” Ramirez said.

Friends and family in North Carolina have been fundraising to help pay her medical bills, selling raffle tickets and setting up a GoFundMe page on her behalf. Ramirez is also applying for financial assistance from the hospital.

Her experience with COVID-19 has not changed who she is as a person, she said, and she looks forward to living her life to the fullest.

If she ever gets the chance to speak with the family of the person whose lungs she now has, she said, she will thank them “for raising such a healthy child and a caring person [who] was kind enough to become an organ donor.”

Her life may never be the same, but that doesn’t mean she won’t try. She laughs as she explains how she asked her surgeon to take her skydiving someday.

“Dr. Bharat actually used to work at a skydiving company when he was younger,” Ramirez said. “And so he promised me that, hopefully within a year, he could get me there.”

And she has every intention of holding him to that promise.

This story is part of a reporting partnership that includes Illinois Public Media, Side Effects Public Media, NPR and KHN.

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation which is not affiliated with Kaiser Permanente.

USE OUR CONTENT

This story can be republished for free (details).

Can’t see the audio player? Click here to listen on SoundCloud.

California Sen. Kamala Harris, the newly named running mate for presumptive Democratic presidential nominee Joe Biden, doesn’t have a lot of background in health policy. But that’s unlikely to prevent Republicans from using her on-again, off-again support for “Medicare for All” against her in the fall campaign.

Meanwhile, with talks between Congress and the Trump administration over the next round of COVID-19 relief at a standstill, President Donald Trump is trying to fill the void with executive orders. What’s unclear is whether the president has the authority to do some of what he is proposing — or whether it will work to help people in dire economic and health straits.

This week’s panelists are Julie Rovner of KHN, Kimberly Leonard of Business Insider, Joanne Kenen of Politico and Mary Agnes Carey of KHN.

Among the takeaways from this week’s podcast:

• Although Harris isn’t closely associated with health care issues, one created problems for her last fall during her failed presidential bid. She was an original co-sponsor of the Medicare for All bill put forward by Sen. Bernie Sanders (I-Vt).
• Trump’s executive order to suspend payroll taxes is causing consternation. It’s not clear if the order applies to both Social Security and Medicare or whether employers will follow the order. There is no indication that Congress would accept the president’s plan — and, if lawmakers don’t, workers and companies would owe the back taxes by the end of the year.
• The tax suspension also has handed Democrats a club for the fall campaign. They are charging that the lack of revenue would endanger the Social Security and Medicare trust funds and could affect consumer benefits. Trump has replied that money from the federal government’s general fund would be used to fill the gap, but with the pandemic causing an economic upheaval, there’s no guarantee the government could afford that.
• The president has promised he will shortly issue an executive order to protect coverage for people with medical conditions. The Affordable Care Act, which Trump has repeatedly pledged to abolish, already carries that protection, so this could be an attempt to offer Republicans a shield if the case before the Supreme Court overturns the law or some of its provisions. Previous vows by the president to offer health care plans have largely gone unfulfilled.
• The administration is seeking to change the U.S. reliance on foreign nations, largely China and India, for prescription drugs and is moving to mandate that the government buy only U.S.-manufactured medications. Although the effort enjoys bipartisan support, it could end up increasing drug prices.
• The recent announcement that the federal government is offering Kodak a $765 million loan to begin making chemicals that could be used in drug manufacturing triggered new scrutiny of the company. Stock trades made before the announcement, major escalation of the company’s lobbying efforts in Washington and a leak about the pending deal are all being analyzed.
• The KHN-Guardian spotlight on the deaths of health care workers from COVID-19 points to a longer-term issue: shortages of medical professionals in key care fields.

Plus, for extra credit, the panelists recommend their favorite health policy stories of the week they think you should read, too:

Julie Rovner: The Wall Street Journal’s “Covid-19 Data Reporting System Gets Off to Rocky Start,” by Robbie Whelan

Joanne Kenen: The Texas Tribune and ProPublica’s “ICE Is Making Sure Migrant Kids Don’t Have COVID-19 — Then Expelling Them to ‘Prevent the Spread’ of COVID-19,” by Dara Lind and Lomi Kriel

Kimberly Leonard: The Philadelphia Inquirer’s “Coronavirus Is Changing Childbirth in the Philadelphia Region, Including Boosting Scheduled Inductions,” by Sarah Gantz

Mary Agnes Carey: The New York Times’ “Inside the Fight to Save Houston’s Most Vulnerable,” by Sheri Fink, Emily Rhyne and Erin Schaff

To hear all our podcasts, click here.

And subscribe to What the Health? on iTunes, Stitcher, Google Play, Spotify, or Pocket Casts.

This story was produced by Kaiser Health News, an editorially independent program of the Kaiser Family Foundation.

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation which is not affiliated with Kaiser Permanente.

USE OUR CONTENT

This story can be republished for free (details).

Jasmine Obra believed that if it wasn’t for her brother Joshua, she wouldn’t exist. When 7-year-old Josh realized that his parents weren’t going to live forever, he asked for a sibling so he would never be alone.

By spring 2020, at ages 29 and 21, Josh and Jasmine shared a condo in Anaheim, California, not far from Disneyland, which they both loved.

Both worked at a 147-bed locked nursing facility that specialized in caring for elderly people with cognitive issues such as Alzheimer’s, where Jasmine, a nursing student, was mentored by Josh, a registered nurse.

Both got tested for COVID-19 on the same day in June.

Both tests came back positive.

Yet only one of them survived.

While COVID-19 takes a far deadlier toll on elderly people than on young adults, an investigation of front-line health care worker deaths by the Guardian and KHN has uncovered numerous instances when staff members under age 30 were exposed on the job and also succumbed.

In our database of 167 confirmed front-line worker deaths, 21 medical staffers, or 13% of the total, were under 40, and eight (5%) fatalities were under 30. The median age of a COVID-19 death in the general population is 78, while the median age of health care worker deaths in the database is 57. This is in part because we are, by definition, including only people of working age who were treating patients during the pandemic — but it is also because, as health workers, they are far more exposed to the virus.

Young health care workers are at a “stage in their career and a stage of life at which they have so much more to offer,” said Andrew Chan, a physician at Massachusetts General Hospital and epidemiologist at Harvard Medical School. “Lives lost among any young people related to COVID really should be considered something that’s unacceptable to us as a society.”

As coronavirus cases surge — and dire shortages of lifesaving protective gear like N95 masks, gowns and gloves persist — the nation’s health care workers face disproportionate risk. Chan’s research has found that health care workers of any age are at least three times more likely to become infected than the general population, and the risk is greater if they are people of color or have to work without adequate personal protective equipment. People of color are also likelier to have inadequate access to PPE.

In interviews, relatives and friends of these younger victims described a particular and wrenching sorrow. Everything lay ahead for these front-line workers. They were just embarking on their careers. Some still lived in the family home; others were looking forward to getting married or had young children. Several parents of victims contacted by the Guardian and KHN said they were simply unable to talk about what had happened, so immense was their grief.

Valeria Viveros, a 20-year-old nursing assistant, was “barely blooming,” said her uncle, Gustavo Urrea. She made ceviche for her patients at a nursing home in Riverside, California, and Urrea could see her visibly growing in self-confidence. When she first fell sick from the virus, she went to the hospital but was sent home with Tylenol. She returned several days later in an ambulance — her final journey.

“We’re all destroyed,” Urrea said. “I can’t even believe it.”

Dulce Garcia, 29, an interpreter at a medical facility in Chapel Hill, North Carolina, died in May. “It just doesn’t feel real,” said friend Brittany Mathis. Garcia was the one who wouldn’t let friends drive if they’d had too many drinks, and she loved going out to dance to bachata, merengue and reggaeton. “There were so many things she had unfinished,” Mathis said.

While people of any age with underlying conditions such as diabetes and obesity are at higher risk of a severe COVID-19 infection, the particular impacts of the virus on young adults are only now becoming clear.

Doctors in New York noticed that more younger patients than usual were presenting with strokes, to the point that “the average age of our stroke patients with large-vessel strokes” — the most devastating kind — “has come down,” said Thomas Oxley, a Mount Sinai medical system neurosurgeon. COVID-19 infections cause inflammation, and often blood clots, in blood vessels as well as the lungs.

Angela Padula thought that she and Dennis Bradt had done everything right.

Padula, 27, and Bradt, 29, became engaged on Feb. 8. She was a special-education teacher, and he was an addiction technician at Conifer Park, a private addiction treatment facility in Glenville, New York.

The couple wanted to save up for a few years for their wedding, but by early April, they had already purchased her engagement and wedding rings. Bradt, who had the sweeter tooth, had chosen a raspberry-swirl wedding cake.

After the pandemic hit, Bradt started showering when he got home from work. He and Padula wore masks when they went out, which was usually only for groceries or gas. They stopped visiting their immunocompromised parents.

On April 5, Bradt came down with a fever, stomach-bug symptoms and achiness, and went to the hospital. His COVID-19 test came back negative. Soon he couldn’t breathe. Another test proved positive. On April 16 he was put on a ventilator. In the process, he choked on his own vomit, which caused his lung to collapse.

Padula assumes Bradt was infected at work, and is unsure whether he had sufficient PPE. Conifer Park did not respond to queries, but according to local health authorities, 12 employees and six patients at the facility tested positive for COVID-19. Padula herself had symptoms so severe that she was taken to the emergency room in an ambulance.

She was not allowed to visit Bradt, and was quarantined alone at home, where she spent her 28th birthday, taking anxiety medication prescribed by her doctor.

On May 13, as doctors tried to coax Bradt off the ventilator, he suffered a heart attack, Padula said. She and Bradt’s mother were permitted to say goodbye to him. But “he was gone by the time we got there,” Padula said in an interview. “He didn’t look like himself,” swollen and festooned with tubes.

Today Padula is still sick. Pain in her arms, legs and back wakes her at night. She feels as though the virus has taken over her life.

“I have my days where it’s just too much to think about,” she said. “I’ll see people getting engaged on Facebook — it makes me mad. I want to be happy for them, but it’s very difficult for me to be happy. We were planning on having kids in a couple years.”

Less than two months before Josh and Jasmine Obra fell ill, Josh posted two pictures to Instagram: One was a photo of a fireworks display at Disneyland; the other was a picture of himself in medical scrubs, wearing a face mask, giving the peace sign.

“Heeeeeyo! It’s been a minute,” he wrote in the caption. “It’s been a tough month for all of us.” He worked with a vulnerable population, he said, and “it’s just mentally exhausting thinking each night when I come home that I may be having symptoms the next day.”

Even so, Josh was the kind of helpful, empathetic nurse who “makes things easier for everybody,” said colleague Sarah Depayso. He knew how to talk to patients and was attuned to others’ stress levels. “We were so busy, and it was ‘I’ll buy you lunch, I’ll buy you dinner, I’ll buy you boba.’”

It had been about 35 days since Disneyland closed its gates, Josh noted in his post. Josh’s photos — of the Sleeping Beauty castle framed by tabebuia blossoms, or of himself in an attention-grabbing Little Mermaid sweater — and corny jokes endeared him to thousands of followers on Instagram. “He had a way of capturing magic,” said his friend Brandon Joseph. The pictures were joyful, like memories of childhood.

Josh’s last post was on June 10, announcing that Disneyland planned to reopen in July. At some point the virus had reached his nursing home, infecting 49 staff members and 120 residents and ultimately killing 14 people. Approximately 41% of all U.S. coronavirus deaths are linked to nursing homes, where frail people live in close quarters, according to The New York Times.

After taking the virus test on June 12, his health deteriorated. On June 15, he messaged Joseph that he couldn’t take a full breath of air without feeling like he was being knifed in the chest. On June 20, he texted that he was at the hospital and that he had a particularly bad case.

The final time Josh spoke with his family, before he was put on a ventilator, was on June 21. “On our last video call together, I was isolated in Anaheim, quarantined, and our parents were at home,” Jasmine said. It was Father’s Day, “and I remembered crying and crying because this was the reality of what our family was.”

Josh’s family was not permitted to visit him in the hospital, and he died on July 6.

By coincidence, Josh, like his grandparents, was buried in the same cemetery as Walt Disney — Forest Lawn Memorial Park in Glendale, California.

Before the funeral, Jasmine walked over to Disney’s grave, she said. “I was like, ‘Hi, Walt. I hope you and my brother found each other.’”

Every night since he died, Jasmine has watched Southern California’s spectacular sunsets, the pinks and yellows that Josh kept returning to in his pictures. “And every time I feel like he’s with me. I look at the sky and sometimes I start talking to it, and I feel like I’m talking to my brother, and that he’s painting beautiful skies.”

Melissa Bailey, Eli Cahan, Shoshana Dubnow and Anna Sirianni contributed to this report.

This story is part of “Lost on the Frontline,” an ongoing project by The Guardian and KHN (Kaiser Health News) that aims to document the lives of health care workers in the U.S. who die from COVID-19, and to investigate why so many are victims of the disease. If you have a colleague or loved one we should include, please share their story.

This story was produced by Kaiser Health News, an editorially independent program of the Kaiser Family Foundation.

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation which is not affiliated with Kaiser Permanente.

USE OUR CONTENT

This story can be republished for free (details).

It’s a familiar moment. The kids want their cereal and the coffee’s brewing, but you’re out of milk. No problem, you think — the corner store is just a couple of minutes away. But if you have COVID-19 or have been exposed to the coronavirus, you’re supposed to stay put.

Even that quick errand could make you the reason someone else gets infected. But making the choice to keep others safe can be hard to do without support.

For many — single parents or low-wage workers, for instance — staying in isolation is difficult as they struggle with how to feed the kids or pay the rent. Recognizing this problem, Massachusetts includes a specific role in its COVID-19 contact-tracing program that’s not common everywhere: a care resource coordinator.

Luisa Schaeffer spends her days coordinating resources for a densely packed, largely immigrant community in Brockton, Massachusetts.

On her first call of the day recently, a woman was poised at her apartment door, debating whether to take that quick walk to get groceries. The woman had COVID-19. Schaeffer’s job is to help clients make the best choice for the public — sometimes, the help she offers is as basic, and important, as the delivery of a jug of milk.

“That’s my priority. I have to put milk in her refrigerator immediately,” Schaeffer said.

“Most of the time it’s the simple things, the simple things can spread the virus.”

The woman who needed milk was one of eight cases referred to Schaeffer through the state government’s Community Tracing Collaborative. Contact tracers make daily calls to people in isolation because they’ve tested positive or those in quarantine because they’ve been exposed to the coronavirus and must wait 14 days to see if they develop an infection. The collaborative estimates that between 10% and 15% of cases request assistance. Those requests are referred to Schaeffer and other care resource coordinators.

“So many people are on this razor-thin edge, and it’s often a single diagnosis like COVID that can tip them over,” said John Welch, director of operations and partnerships for Partners in Health’s Massachusetts Coronavirus Response, which manages the state’s contact-tracing program.

He said a role such as resource coordinator becomes essential in getting people back to “a sense of health, a sense of wellness, a sense of security.”

With milk on its way, Schaeffer dialed a woman who needed to find a primary care doctor, make an appointment and apply for Medicaid. That call was in Spanish.

With her third client, Schaeffer switched to her native language, Cape Verdean Creole. The man on the other end of the line and his mother had both been sick and out of work. He applied for food stamps and was denied. Schaeffer texted the regional head of a state office that manages that program. A few minutes later, the director texted back that he was on the case.

Schaeffer, who has deep roots in the community, is on temporary loan to the state’s contact-tracing collaborative and will later return to her job, helping patients understand and follow their prescribed treatments at the Brockton Neighborhood Health Center.

The collaborative said most client requests are for food, medicine, masks and cleaning supplies. COVID-19 patients who are out of work for weeks or who don’t have salaried jobs may need help applying for unemployment or help with rental assistance — available to qualified Massachusetts residents.

Care resource coordinators even connect people with legal support when they need it. An older woman employed in the laundry room at a nursing home was told she wouldn’t be paid while out sick. Schaeffer got in touch with the Community Tracing Collaborative’s attorney, who reminded the company that paid sick leave is required of most employers during the pandemic.

“So, now, everything’s in place. She started getting paid,” Schaeffer said.

There are glitches as the care resource coordinators try to support people isolating at home. Some workers who are undocumented return to work because they fear losing their jobs. When the local food bank runs out, Schaeffer has had to scramble to find a local grocer to help. The free canned goods or vegetables can be like foreign cuisine for Schaeffer’s clients, some of whom are from Cape Verde and Peru. In those cases, she can reach out to a nutritionist and set up a cooking lesson via conference call.

“I love the three-way calls,” she said, beaming.

Schaeffer and other care resource coordinators have responded to more than 10,500 requests for help so far through Massachusetts’ contact-tracing program. Demand is likely greater in cities such as Brockton, with higher infection rates than most of the state and a 28.7% lower median household income.

Massachusetts has carved out care resource coordination as a separate job in this project. But the role is not new. Local health departments routinely include what might be called support or wrap-around services when tracing contacts. With cases of tuberculosis, for example, a public health worker might make sure patients have a doctor, get to frequent appointments and have their medications.

“You can’t have one without the other,” said Sigalle Reiss, president of the Massachusetts Health Officers Association.

Partners in Health’s Welch, who is advising other states on contact tracing, said the importance of having someone assist with food and rent while residents isolate isn’t getting enough attention.

“I don’t see that as a universal approach with other contact-tracing programs across the U.S.,” he said.

Some contact-tracing programs that schools, employers or states have erected during the pandemic cover only the basics.

“They’re focused on: Get your positive case, find the contacts, read the script, period, the end,” said Adriane Casalotti, chief of government and public affairs at the National Association of City and County Health Officials. “And that’s really not how people’s lives work.”

Casalotti acknowledged that the support role — and services for people isolating or in quarantine — adds to the cost of contact tracing. She urges more federal funding to help with this expense as well as a federal extension of the paid sick time requirement, and more money for food banks so that people exposed to the coronavirus can make sure they don’t give it to anyone else.

“Individuals’ lives can be messy and complicated, so helping them to be able to drop everything and keep us all safe — we can help them through the challenges they might have,” Casalotti said.

This story is part of a partnership that include WBUR, NPR and Kaiser Health News, an editorially independent program of the Kaiser Family Foundation.

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation which is not affiliated with Kaiser Permanente.

USE OUR CONTENT

This story can be republished for free (details).

Ever since he was a presidential candidate, President Donald Trump has been promising the American people a “terrific,” “phenomenal” and “fantastic” new health care plan to replace the Affordable Care Act.

But, in the 3½ years since he set up shop in the Oval Office, he has yet to deliver.

In his early days on the campaign trail, circa 2015, he said on CNN he would repeal Obamacare and replace it with “something terrific,” and on Sean Hannity’s radio show he said the replacement would be “something great.” Fast-forward to 2020. Trump has promised an Obamacare replacement plan five times so far this year. And the plan is always said to be just a few weeks away.

The United States is also in the grips of the COVID-19 pandemic, which has resulted in more than 163,000 U.S. deaths. KFF estimates that 27 million Americans could potentially lose their employer-sponsored insurance and become uninsured following their job loss due to the pandemic. (KHN is an editorially independent program of the Kaiser Family Foundation.) All of this makes health care a hot topic during the 2020 election.

This record is by no means a comprehensive list, but here are some of the many instances when Trump promised a new health plan was coming soon.

2016: The Campaign Trail

Trump tweeted in February that he would immediately repeal and replace Obamacare and that his plan would save money and result in better health care.

By March, a blueprint, “Healthcare Reform to Make America Great Again,” was posted on his campaign website. It echoed popular GOP talking points but was skimpy on details.

During his speech accepting the Republican nomination in July, Trump again promised to repeal Obamacare and alluded to ways his replacement would be better. And, by October, Trump promised that within his first 100 days in office he would repeal and replace Obamacare. During his final week of campaigning, he suggested asking Congress to come in for a special session to repeal the health care law quickly.

2017: The First Year in Office

January and February:

Trump told The Washington Post in a January interview that he was close to completing his health care plan and that he wanted to provide “insurance for everybody.”

He tweeted Feb. 17 that while Democrats were delaying Senate confirmation of Tom Price, his pick to lead the Department of Health and Human Services, the “repeal and replacement of ObamaCare is moving fast!”

And, on Feb. 28, in his joint address to Congress, Trump discussed his vision for replacing Obamacare. “The way to make health insurance available to everyone is to lower the cost of health insurance, and that is what we are going to do,” he said.

March: Eyes on Congress — And Twitter

House Republicans, with backing from the White House, were the ones to introduce new health legislation, the American Health Care Act (AHCA). The repeal-and-replace bill kept in place some of the more popular provisions of the ACA. Some conservative Republicans said the bill didn’t go far enough, deriding it as “Obamacare Lite” and refusing to vote on it.

On March 9, Trump tweeted, “Despite what you hear in the press, healthcare is coming along great. We are talking to many groups and it will end in a beautiful picture!”

Later that month, as efforts to pass the AHCA continued to stall, Trump updated his earlier promise.

“And I never said — I guess I’m here, what, 64 days? I never said repeal and replace Obamacare. You’ve all heard my speeches. I never said repeal it and replace it within 64 days. I have a long time,” said Trump in his remarks from the Oval Office on March 24. (Which was true; he had said within 100 days.) “But I want to have a great health care bill and plan, and we will. It will happen. And it won’t be in the very distant future.”

April and May: A Roller-Coaster Ride of Legislation and Celebration, Then …

After an intraparty dust-up, the House narrowly passed the AHCA on May 4. Despite tepid support in the Republican-controlled Senate, Trump convened a Rose Garden celebratory event to mark the House’s passage, saying he felt “so confident” about the measure. He also congratulated Republican lawmakers on what he termed “a great plan” and “incredibly well-crafted.”

Nonetheless, Senate Republicans first advanced their own replacement bill, the Better Care Reconciliation Act, but ultimately voted on a “skinny repeal” that would have eliminated the employer mandate and given broad authority to states to repeal sections of the ACA. It failed to gain passage when Sen. John McCain (R-Ariz.) gave it a historic thumbs-down in the wee hours of July 28.

September and October: Moving On … But Not

Trump began September by signaling in a series of tweets that he was moving on from health reform.

But on Oct. 12, he signed an executive order allowing for health care plans to be sold that don’t meet the regulatory standards set up in the Affordable Care Act. The next day, Trump tweeted, “ObamaCare is a broken mess. Piece by piece we will now begin the process of giving America the great HealthCare it deserves!”

Roughly two weeks later, on Oct. 29, Trump got back to the promise with this tweet: “… we will … have great Healthcare soon after Tax Cuts!”

2019: More Talk, More Tweets

March and April: A Moving Target

It seems that 2018 was a quiet time — at least for presidential promises regarding a soon-to-be-unveiled health plan. It was reported that conservative groups were working on an Obamacare replacement plan. But in 2019, Trump again took up the health plan mantle with this March 26 tweet: “The Republican Party will become ‘The Party of Healthcare!’” Two days later, in remarks to reporters before boarding Marine One, Trump said that “we’re working on a plan now,” but again updated the timeline, saying, “There’s no very great rush from the standpoint” because he was waiting on the court decision for Obamacare. This was a reference to Texas v. U.S., the lawsuit brought by a group of Republican governors to overturn the ACA. It is currently pending before the Supreme Court.

Backtracking from his earlier promises to repeal and replace Obamacare within his first 100 days in office, Trump on April 3 tweeted: “I was never planning a vote prior to the 2020 Election on the wonderful HealthCare package that some very talented people are now developing for me & the Republican Party. It will be on full display during the Election as a much better & less expensive alternative to ObamaCare…”

June 16:

In an interview with ABC News, Trump again said a health care plan would be coming shortly.

“We’re going to produce phenomenal health care. And we already have the concept of the plan. And it’ll be much better health care,” Trump told George Stephanopoulos. When Stephanopoulos asked if he was going to tell people what the plan was, Trump responded: “Yeah, we’ll be announcing that in two months, maybe less.”

June 26:

But then, timing again changed as Trump promised a sweeping health plan after the 2020 election. “If we win the House back, keep the Senate and keep the presidency, we’ll have a plan that blows away ObamaCare,” Trump said in a speech to the Faith and Freedom Coalition’s Road to the Majority conference.

Oct. 3:

He reiterated this post-2020 election pledge in a speech to Florida retirees. “If the Republicans take back the House, keep the Senate, keep the presidency — we’re gonna have a fantastic plan,” Trump said.

Oct. 25:

Trump told reporters that Republicans have a “great” health care plan. “You’ll have health care the likes of which you’ve never seen,” he said.

2020: ‘Two Weeks’

Feb. 10:

During a White House business session with governors, Trump commented on the Republican governors’ lawsuit to undo the ACA and whether protections for preexisting conditions would be lost: “If a law is overturned, that’s OK, because the new law’s going to have it in.”

May 6:

During the signing of a proclamation to honor National Nurses Day, Trump again said Obamacare would be replaced “with great healthcare at a lesser price, and preexisting conditions will be included and you won’t have the individual mandate.”

July 19:

Trump told Chris Wallace in a Fox News interview that a health care plan would be unveiled within two weeks: “We’re signing a health care plan within two weeks, a full and complete health care plan that the Supreme Court decision on DACA gave me the right to do.”

July 31:

With no sign of a plan yet, reporters asked Trump about it at a Florida event. Trump responded that a “very inclusive” health care plan was coming and “I’ll be signing it sometime very soon.”

Aug. 3:

Pushing the timeline once again, Trump said during a press briefing that the health care plan would be introduced “hopefully, prior to the end of the month.”

Aug. 7:

Citing his two-week timeline once again, Trump said during a press briefing that he would pursue a major executive order in the next two weeks “requiring health insurance companies to cover all preexisting conditions for all customers.” Trump also said that covering preexisting conditions had “never been done before,” despite the ACA provisions outlining protections for people who have preexisting conditions being among the law’s most popular components. The Trump administration has backed the effort to overturn the ACA — including these protections — now pending before the Supreme Court.

Aug. 10:

In response to a reporter’s question about why he was planning to issue an executive order when the ACA already protects those with preexisting conditions, Trump said: “Just a double safety net, and just to let people know that the Republicans are totally strongly in favor of … taking care of people with preexisting conditions. It’s a second platform. We have: Preexisting conditions will be taken care of 100% by Republicans and the Republican Party.”

Just before publication, we asked the White House for more information regarding when exactly the plan might be unveiled. The press office did not respond to our request for comment.

This story was produced by Kaiser Health News, an editorially independent program of the Kaiser Family Foundation.

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation which is not affiliated with Kaiser Permanente.

USE OUR CONTENT

This story can be republished for free (details).

Julie Rovner, KHN’s chief Washington correspondent, on Tuesday joined WDET’s “Detroit Today” host Stephen Henderson and Dr. George Kipa, the deputy chief medical officer at Blue Cross Blue Shield of Michigan, to talk about the future of telemedicine and whether Medicare and private insurers will continue to pay for those services. You can listen to the discussion here.

Every day, the nation is reminded of COVID-19’s ongoing impact as new death counts are published. What is not well documented is the toll on family members.

New research suggests the damage is enormous. For every person who dies of COVID-19, nine close family members are affected, researchers estimate based on complex demographic calculations and data about the coronavirus.

Many survivors will be shaken by the circumstances under which loved ones pass away — rapid declines, sudden deaths and an inability to be there at the end — and worrisome ripple effects may linger for years, researchers warn.

If 190,000 Americans die from COVID complications by the end of August, as some models suggest, 1.7 million Americans will be grieving close family members, according to the study. Most likely to perish are grandparents, followed by parents, siblings, spouses and children.

“There’s a narrative out there that COVID-19 affects mostly older adults,” said Ashton Verdery, a co-author of the study and a professor of sociology and demography at Pennsylvania State University. “Our results highlight that these are not completely socially isolated people that no one cares about. They are integrally connected with their families, and their deaths will have a broad reach.”

Because of family structures, Black families will lose slightly more close family members than white families, aggravating the pandemic’s disproportionate impact on African American communities. (Verdery’s previous research modeled kinship structures for the U.S. population, dating to 1880 and extending to 2060.)

The potential consequences of these losses are deeply concerning, with many families losing important sources of financial, social and caregiving support. “The vast scale of COVID-19 bereavement has the potential to lower educational achievement among youth, disrupt marriages, and lead to poorer physical and mental health across all age groups,” Verdery and his co-authors observe in their paper.

Holly Prigerson, co-director of the Center for Research on End-of-Life Care at Weill Cornell Medicine in New York City, sounds a similar alarm, especially about the psychological impact of the pandemic, in a new paper on bereavement.

“Bereaved individuals have become the secondary victims of COVID-19, reporting severe symptoms of traumatic stress, including helplessness, horror, anxiety, sadness, anger, guilt, and regret, all of which magnify their grief,” she and co-authors from Memorial Sloan Kettering Cancer Center in New York noted.

In a phone conversation, Prigerson predicted that people experiencing bereavement will suffer worse outcomes because of lockdowns and social isolation during the pandemic. She warned that older adults are especially vulnerable.

“Not being there in a loved one’s time of need, not being able to communicate with family members in a natural way, not being able to say goodbye, not participating in normal rituals — all this makes bereavement more difficult and prolonged grief disorder and post-traumatic stress more likely,” she noted.

Organizations that offer bereavement care are seeing this unfold as they expand services to meet escalating needs.

Typically, 5% to 10% of bereaved family members have a “trauma response,” but that has “increased exponentially — approaching the 40% range — because we’re living in a crisis,” said Yelena Zatulovsky, vice president of patient experience at Seasons Hospice & Palliative Care, the nation’s fifth-largest hospice provider.

Since March, Seasons has doubled the number of grief support groups it offers to 29, hosted on virtual platforms, most of them weekly. All are free and open to community members, not just families whose loved ones received care from Seasons. (To find a virtual group in your time zone, call 1-855-812-1136, Season’s 24/7 call center.)

“We’re noticing that grief reactions are far more intense and challenging,” Zatulovsky said, noting that requests for individual and family counseling have also risen.

Medicare requires hospices to offer bereavement services to family members for up to 13 months after a client’s death. Many hospices expanded these services to community members before the pandemic, and Edo Banach, president and CEO of the National Hospice and Palliative Care Organization, hopes that trend continues.

“It’s not just the people who die on hospice and their families who need bereavement support at this time; it’s entire communities,” he said. “We have a responsibility to do even more than what we normally do.”

In New York City, the center of the pandemic in its early months, the Jewish Board is training school administrators, teachers, counselors and other clinicians to recognize signs of grief and bereavement and provide assistance. The health and human services organization serves New Yorkers regardless of religious affiliation.

“There is a collective grief experience that we are all experiencing, and we’re seeing the need go through the roof,” said Marilyn Jacob, a senior director who oversees the organization’s bereavement services, which now includes two support groups for people who have lost someone to COVID-19.

“There’s so much loss now, on so many different levels, that even very seasoned therapists are saying, ‘I don’t really know how to do this,’” Jacob said. In addition to losing family members, people are losing jobs, friends, routines, social interactions and a sense of normalcy and safety.

For many people, these losses are sudden and unexpected, which can complicate grief, said Patti Anewalt, director of Pathways Center for Grief & Loss in Lancaster, Pennsylvania, affiliated with the state’s largest not-for-profit hospice. The center recently created a four-week group on sudden loss to address its unique challenges.

The day before Julie Cheng’s 88-year-old mother was rushed to the hospital in early July, she had been singing songs with Cheng’s sister over the phone at her Irvine, California, nursing home. The next morning, a nurse reported that the older woman had a fever and was wheezing badly. At the hospital, COVID-19 was diagnosed and convalescent plasma therapy tried. Within two weeks, after suffering a series of strokes, Cheng’s mother died.

Since then, Cheng has mentally replayed the family’s decision not to take her mother out of the nursing home and to refuse mechanical ventilation at the hospital — something she was sure her mother would not have wanted.

“There have been a lot of ‘what ifs?’ and some anger: Someone or something needs to be blamed for what happened,” she said, describing mixed emotions that followed her mother’s death.

But acceptance has sprung from religious conviction. “Mostly, because of our faith in Jesus, we believe that God was ready to take her and she’s in a much better place now.”

Coping with grief, especially when it is complicated by social isolation and trauma, takes time. If you are looking for help, call a local hospice’s bereavement department and ask what kind of services it provides to people in the community. Funeral directors should also have a list of counselors and grief support programs. One option is GriefShare, offered by churches across the country.

Many experts believe the need for these kinds of services will expand exponentially as more family members emerge from pandemic-inspired shock and denial.

“I firmly believe we’re still at the tip of the iceberg, in terms of the help people need, and we won’t understand the full scope of that for another six to nine months,” said Diane Snyder-Cowan, leader of the bereavement professionals steering committee of the National Council of Hospice and Palliative Professionals.

This story was produced by Kaiser Health News, an editorially independent program of the Kaiser Family Foundation.

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation which is not affiliated with Kaiser Permanente.

USE OUR CONTENT

This story can be republished for free (details).