Kaiser Health News
Adult Children Discuss the Trials of Caring for Their Aging Parents
Reed Abelson, The New York Times and Jordan Rau, KFF Health News
Tue, 14 Nov 2023 10:35:00 +0000
“It is emotionally and physically draining.”
Natasha Lazartes
39, Brooklyn, New YorkTherapist
I am 39 years old. I had to care for my father, who passed from cancer in 2019; my mother, who passed in November 2021 from cancer; and since my mother’s passing, I have inherited the care of my grandmother. She is 97, diagnosed with moderate dementia, and considered high risk to be left home alone. We had been applying for Medicaid long-term care to receive a home health aide since early November 2021. She finally got a home health aide in January 2022, but it’s been a nightmare. They are so desperate to hire workers that they will take anyone. She was left without an aide on many random days with a late-notice telephone call or text message from the aide needing the day off and the agencies not able to find a replacement in time. I have changed agencies multiple times. My husband has been a great support the entire time. We rely on security cameras we installed in our apartment to see how she is doing while we are at work. How is it on a daily basis? It is emotionally and physically draining. The health care system for the elderly is neglected, broken, and inadequate to meet any demands, even the basic needs.
“When I signed the lease, I felt like I was breaking my promise.”
Robert Ingenito
44, Mamaroneck, New YorkPublic information officer
My father, who is now 93, had me late in life, at age 49. My mother died from cancer when I was 19. Literally on her deathbed, she said to me, “Don’t put your father in a nursing home.” Now, at 44, I’m married, I have a 6-year-old daughter, and for the past five years my dad has lived with us. I work about 20 hours a week, which allowed me to do something other than being his caregiver. If I had to put a price tag on the quality of care I provided to my dad, it would probably be the equivalent of a high-end assisted living facility. But it was becoming really hard for myself, my wife, and our daughter. His level of care was getting to the point of something I just could not sustain. He couldn’t be left alone. I wasn’t getting any sleep. Recently, I made the extremely difficult decision to move him into an assisted living facility. Fortunately, he has the financial resources to do that. For most people, that’s not even an option. I have been happy with the level of care that he’s getting, but when I signed the lease, I felt like I was breaking my promise. I tried my best to follow my mom’s wishes. But there’s only so much I could do, and I had to do it.
“I was a rebellious teen and she never gave up on me, so how am I going to give up on her?”
Karina Ortega
43, DallasCaregiver
My mother was diagnosed with Alzheimer’s in March 2020, but even before then, I knew something was wrong. One day, she went to visit a family friend and was going to donate some clothes to her. Seven hours later, we still hadn’t heard from her. She got lost. Eventually she found a supermarket that was familiar to her and got home. I’m no longer working at all. This has all taken a toll on my life. I do have a younger brother and an older sister, but my sister has a daughter in college and my brother has a 7-year-old. I’m the only one with no children and have always been the one who would take care of my parents. If Mom gets worse and I can’t care for her? That’s something I struggle with. Putting her in a home? In our culture, that’s looked down upon. I was a rebellious teen, and she never gave up on me, so how am I going to give up on her? I just can’t see it in me to leave my mom because she needs me.
“She passed in October. The state says we still owe close to $20,000 for the year Medicaid paid for her nursing home.”
Gay Glenn
61, Topeka, KansasActor
It was costing us $8,000 out-of-pocket to have people come into my mom’s house to help her, and that was only eight hours a day. I’m watching her savings just dwindle. And then she fell. And then she fell again overnight. At the hospital, they found she had a cracked sacrum. She was in rehab for the maximum number of days that Medicare will cover and couldn’t return home. Because she owned a house, had two rentals, savings, and two cars, she had to pay long-term care costs out of her pocket. I think my mom had about $18,000 in the bank. She had five life insurance policies in her children’s names. We cashed out the policies. In one year, she had to pay $65,000 for her care at the nursing home and spend down an additional $37,000 to be able to be eligible for Medicaid. We just sold her house. She passed in October. The state says we still owe close to $20,000 for the year Medicaid paid for her nursing home. I moved here in February of 2019. I certainly didn’t expect to be here going on five years. It was awful — personally all the time and energy and money to do this for her — and it was great. I was able to protect her and make sure everything was OK for her. I said at the memorial service that my mom was there when I took my first breath, and I was there when she took her last. If that’s not the circle of life, I don’t know what is.
“I’m going to take on some extra work to cover the costs.”
Bryan Ness
62, Angwin, CaliforniaBiology professor
We had it all planned. My mom was going to live with us. She has some cognitive issues from the stroke. All of her long-term memory is just fine. Her short-term memory is just nonexistent. We looked at what it would cost for home care. Even if we limited it to just eight hours a day, it’s more expensive than the assisted living place that’s 10 minutes from our house. It’s a wonderful little place. It’s $4,500 a month. That’s still a lot. She’s run out of her own money. There’s no more than the $1,500 she gets from Social Security. We talked to the place and got it down to $4,000. I got really good responses from GoFundMe. A lot of my former students and friends put in some chunks. I hate begging for money. My wife and I are at least at the age where we don’t have kids we’re supporting anymore. But we’re concerned we are going to hurt our own retirement savings. My wife is already 65. We need to keep our retirement plan going, too. They told us: Don’t ruin your own retirement over this. Well, agreed, but we’ve got to take care of my mom, too. We have a relative who’s giving $500 a month. I’m going to take on some extra work to cover the costs. I felt my career could wind down over the next few years, and now I’ve got an $1,800 bill added to my finances from now until whenever.
“I wish I had known that no one was going to help me.”
Stacey Wheeler
60, Greenville, South CarolinaRetiree
My mom was in independent living. I had someone coming in the morning to get her up. Nobody is getting paid enough to say: “Now, come on, you really want to get dressed. Let’s pick out some earrings.” I should have tried 20 people in hopes of finding one who did that. No one is going to waste time with an old person who doesn’t want to do what they don’t want to do. It’s hard to care about grumpy people when you’re barely putting food on the table. My mom got sick and then needed to be in a wheelchair in assisted living. When she sold her condo, she had about $2,500 a month in retirement and she had about $120,000 in the bank. That starts going fast when you hit $7,000 or $8,000 a month. Everyone’s so worried about being sued by people that every time something happened, they wanted her to go to the ER. I wish I had known that no one was going to help me. I would have kept her in independent living and gone through hiring people until I found one. My husband and I were both retired, fortunately. We couldn’t leave town. We tried twice and had to come back. Ironically, the last place she was in, because she was going to run out of money, was the best place. The room wasn’t as big, but the staff were the best there. Mom died in August 2022.
“They had to send her home with us and we had to keep her chemically sedated.”
Jeanette Landin
55, Brattleboro, VermontAssociate professor
There were wildfires where my mother lived out in California that were getting very close and were causing her health problems. Between that and a series of in-home falls and her inability to drive herself to different places, she finally called in November of 2017 and said, “I think I need to come live with you.” We found a house that would be adequate for both my family and her needs. Her dementia started to get worse. We looked at adult day care and found a local place. It was tremendously expensive to do that. But they were good until they got to a point where they contacted me and said she’s not following directions, she’s refusing to do appropriate hygiene. This was early 2022, and we had to pull her out of that service. In early April, she started getting violent and would threaten my husband that she was going to kill him by chopping his head off. And then she would tell me she was going to kill my daughters. One night I had her taken to the hospital and they found she had been in kidney failure. She was still very violent. They looked at placement in a nursing home. Because of the fact she was violent, she couldn’t be placed anywhere. They had to send her home with us, and we had to keep her chemically sedated. From the time she came home till the time she died, it was seven days. We kept our daughters from coming upstairs. We didn’t want them hearing and seeing what was happening because it’s not something I would wish anybody to ever go through. It was awful.
——————————
By: Reed Abelson, The New York Times and Jordan Rau, KFF Health News
Title: Adult Children Discuss the Trials of Caring for Their Aging Parents
Sourced From: kffhealthnews.org/news/article/dying-broke-adult-children-discuss-trials-caregiving-aging-parents/
Published Date: Tue, 14 Nov 2023 10:35:00 +0000
Did you miss our previous article…
https://www.biloxinewsevents.com/what-long-term-care-looks-like-around-the-world/
Kaiser Health News
Years Later, Centene Settlements With States Still Unfinished
More than three years ago, health insurance giant Centene Corp. settled allegations that it overcharged Medicaid programs in Ohio and Mississippi related to prescription drug billing.
Now at least 20 states have settled with Centene over its pharmacy benefit manager operation that coordinated the medications for Medicaid patients. Arizona was among the most recent to join the ranks, settling for an undisclosed payout, Richie Taylor, a spokesperson for the state’s attorney general, told KFF Health News in December.
All told, Centene has agreed to pay more than $1 billion in settlements, according to Cohen Milstein, one of the law firms representing states in the agreements. Meanwhile, St. Louis-based Centene reported $163 billion in revenue in 2024, largely proceeds from government health programs for Medicaid, Medicare, and the Affordable Care Act. The health care company has admitted no wrongdoing in the settlements.
Two state holdouts appear to remain: Georgia has yet to settle with Centene, even though the administration of Gov. Brian Kemp hired law firm Liston & Deas in 2019 to investigate state pharmacy benefit operations.
Florida hired the same law firm in 2021 to pursue overbilling allegations involving Centene, but state officials declined to answer a reporter’s questions about whether Florida has dropped the case, reached an undisclosed settlement, or is still discussing the issue.
Neither state has publicly disclosed what’s standing in the way of potentially tens of millions of dollars in Centene payouts, or whether negotiations are taking place. Because the deals are largely occurring outside the court system, the process between the private law firms hired by states and Centene remains generally out of public view.
Centene spokespeople did not return multiple phone calls and emails asking for updates. In 2022, the company said it was working on settlements with Georgia and eight other states, having reached deals with 13 others. And in a Securities and Exchange Commission filing in October, Centene said it had reached settlements with “the vast majority of states impacted” over the operations of its former pharmacy benefits manager.
Georgia has “taken disproportionately long compared to other states,” said Greg Reybold, a vice president of the American Pharmacy Cooperative, which represents independent pharmacies.
Meanwhile, Centene’s Georgia Medicaid plan, the Peach State Health Plan, lost its bid last year to continue its longtime participation in a Georgia Medicaid program in which companies cover the care for Medicaid recipients for a set fee from the government rather than for each medical service provided. The company, which has been part of the contract since the managed-care program began in 2006, filed a protest over the contract awards, saying that the process was “mismanaged, rife with errors and reckless practices.”
Nationally, pharmacy benefit managers, or PBMs, have come under increased scrutiny over accusations of pocketing discounts on medications or inflating costs in the years since Centene started settling its Medicaid-related allegations. Members of Congress have proposed major policy constraints on PBMs. Centene has since overhauled its PBM operation.
Still, a possible settlement in Georgia could bring in significant money to the state. California had the largest publicly disclosed settlement at $215 million, split with the federal government, but a settlement with Georgia could be in the range of the $88 million that Centene agreed to pay in the Ohio dispute, Reybold said.
The state should aggressively pursue a settlement with Centene, said Roland Behm, co-founder of the Georgia Mental Health Policy Partnership, who is a critic of Centene and its Georgia Medicaid plan. Behm said state Attorney General Chris Carr should take “the same tenacious prosecutorial action” against Centene that Carr’s agency takes against individuals involved in fraud against Medicaid, the federal-state program that provides health insurance coverage for those with low incomes or disabilities.
Carr’s office said in 2022 that it stood ready to represent Georgia in settlement negotiations with Centene. Carr, a Republican who has announced he’s running for governor in 2026, received tens of thousands of dollars in campaign contributions from Centene, its subsidiaries, and its executives, as did Kemp, a fellow Republican, KFF Health News reported in 2022. Contributions to the Kemp and Carr campaigns were part of more than $26.9 million that Centene, its subsidiaries, its top executives, and their spouses donated to state politicians in 33 states, to their political parties, and to nonprofit fundraising groups from 2015 through 2022.
Since 2022, the company and its political action committee have contributed, combined, at least $2 million more to the campaigns of Florida and Georgia candidates of both political parties, along with state party organizations and political committees, according to state campaign finance records.
When asked about a possible settlement, a spokesperson for Carr, Kara Murray, directed a reporter to the Georgia Department of Community Health, which administers Medicaid.
Fiona Roberts, a spokesperson for that agency, then told KFF Health News that the department “is actively pursuing options to ensure regulatory compliance with the state’s contract.” She declined to comment further.
Florida’s attorney general’s office directed a reporter to the state agency that oversees Medicaid, the Florida Agency for Health Care Administration. But that agency did not respond to multiple phone calls and emails requesting comment.
Rebecca Grapevine of Healthbeat contributed to this article.
The post Years Later, Centene Settlements With States Still Unfinished appeared first on kffhealthnews.org
Kaiser Health News
Home Improvements Can Help People Age Independently. But Medicare Seldom Picks Up the Bill.
Chikao Tsubaki had been having a terrible time.
In his mid-80s, he had a stroke. Then lymphoma. Then prostate cancer. He was fatigued, isolated, not all that steady on his feet.
Then Tsubaki took part in an innovative care initiative that, over four months, sent an occupational therapist, a nurse, and a handy worker to his home to help figure out what he needed to stay safe. In addition to grab bars and rails, the handy worker built a bookshelf so neither Tsubaki nor the books he cherished would topple over when he reached for them.
Reading “is kind of the back door for my cognitive health — my brain exercise,” said Tsubaki, a longtime community college teacher. Now 87, he lives independently and walks a mile and a half almost every day.
The program that helped Tsubaki remain independent, called Community Aging in Place: Advancing Better Living for Elders, or CAPABLE, has been around for 15 years and is offered in about 65 places across 26 states. It helps people 60 and up, and some younger people with disabilities or limitations, who want to remain at home but have trouble with activities like bathing, dressing, or moving around safely. Several published studies have found the program saves money and prevents falls, which the Centers for Disease Control and Prevention says contribute to the deaths of 41,000 older Americans and cost Medicare about $50 billion each year.
Despite evidence and accolades, CAPABLE remains small, serving roughly 4,600 people to date. Insurance seldom covers it (although the typical cost of $3,500 to $4,000 per client is less than many health care interventions). Traditional Medicare and most Medicare Advantage private insurance plans don’t cover it. Only four states use funds from Medicaid,the federal-state program for low-income and disabled people. CAPABLE gets by on a patchwork of grants from places like state agencies for aging and philanthropies.
The payment obstacles are an object lesson in how insurers, including Medicare, are built around paying for doctors and hospitals treating people who are injured or sick — not around community services that keep people healthy. Medicare has billing codes for treating a broken hip, but not for avoiding one, let alone for something like having a handy person “tack down loose carpet near stairs.”
And while keeping someone alive longer may be a desirable outcome, it’s not necessarily counted as savings under federal budget rules. A 2017 Centers for Medicare & Medicaid Services evaluation found that CAPABLE had high satisfaction rates and some savings. But its limited size made it hard to assess the long-term economic impact.
It’s unclear how the Trump administration will approach senior care.
The barriers to broader state or federal financing are frustrating, said Sarah Szanton, who helped create CAPABLE while working as a nurse practitioner doing home visits in west Baltimore. Some patients struggled to reach the door to open it for her. One tossed keys to her out of a second-story window, she recalled.
Seeking a solution, Szanton discovered a program called ABLE, which brought an occupational therapist and a handy worker to the home. Inspired by its success, Szanton developed CAPABLE, which added a nurse to check on medications, pain, and mental well-being, and do things like help participants communicate with doctors. It began in 2008. Szanton since 2021 has been the dean of Johns Hopkins University School of Nursing, which coordinates research on CAPABLE. The model is participatory, with the client and care team “problem-solving and brainstorming together,” said Amanda Goodenow, an occupational therapist who worked in hospitals and traditional home health before joining CAPABLE in Denver, where she also works for the CAPABLE National Center, the nonprofit that runs the program.
CAPABLE doesn’t profess to fix all the gaps in U.S. long-term care, and it doesn’t work with all older people. Those with dementia, for example, don’t qualify. But studies show it does help participants live more safely at home with greater mobility. And one study that Szanton co-authored estimated Medicare savings of around $20,000 per person would continue for two years after a CAPABLE intervention.
“To us, it’s so obvious the impact that can be made just in a short amount of time and with a small budget,” said Amy Eschbach, a nurse who has worked with CAPABLE clients in the St. Louis area, where a Medicare Advantage plan covers CAPABLE. That St. Louis program caps spending on home modifications at $1,300 a person.
Both Hill staff and CMS experts who have looked at CAPABLE do see potential routes to broader coverage. One senior Democratic House aide, who asked not to be identified because they were not allowed to speak publicly, said Medicare would have to establish careful parameters. For instance, CMS would have to decide which beneficiaries would be eligible. Everyone in Medicare? Or only those with low incomes? Could Medicare somehow ensure that only necessary home modifications are made — and that unscrupulous contractors don’t try to extract the equivalent of a “copay” or “deductible” from clients?
Szanton said there are safeguards and more could be built in. For instance, it’s the therapists like Goodenow, not the handy workers, who put in the work orders to stay on budget.
For Tsubaki, whose books are not only shelved but organized by topic, the benefits have endured.
“I became more independent. I’m able to handle most of my activities. I go shopping, to the library, and so forth,” he said. His pace is slow, he acknowledged. But he gets there.
Kenen is the journalist-in-residence and a faculty member at Johns Hopkins University School of Public Health. She is not affiliated with the CAPABLE program.
The post Home Improvements Can Help People Age Independently. But Medicare Seldom Picks Up the Bill. appeared first on kffhealthnews.org
Kaiser Health News
A Runner Was Hit by a Car, Then by a Surprise Ambulance Bill
Jagdish Whitten was on a run in July 2023 when a car hit him as he crossed a busy San Francisco street. Whitten, then 25, described doing “a little flip” over the vehicle and landing in the street before getting himself to the curb.
Concerned onlookers called an ambulance. But Whitten instead had friends pick him up and take him to a nearby hospital, the Helen Diller Medical Center, operated by the University of California-San Francisco.
“I knew that ambulances were expensive, and I didn’t think I was going to die,” he said.
Whitten said doctors treated him for a mild concussion, a broken toe, and bruises.As he sat in a hospital bed, attached to an IV and wearing a neck brace, Whitten said, doctors told him that because he had suffered a traumatic injury, they had to send him by ambulance to the city’s only trauma center, Zuckerberg San Francisco General Hospital.
After a short ambulance ride, Whitten said, emergency room doctors checked him out, told him he had already received appropriate treatment, and released him.
Then the bill came.
The Medical Procedure
Traumatic injuries are those that threaten life or limb, and some facilities specialize in providing care for them. For someone hit by a car, that can include stabilizing vital signs, screening for internal injuries, and treating broken bones and concussions. Zuckerberg Hospital is a Level 1 trauma center, meaning it can provide any care needed for severely injured patients.
In emergency medicine, it is standard to transfer patients to centers best equipped to provide care. Ambulances are typically used for transfers because they are able to handle trauma patients, with tools to aid in resuscitation, immobilization, and life support.
At the first hospital, Whitten said, doctors performed a thorough workup, including a CT scan and X-rays, and advised him to follow up with his primary care physician and an orthopedic doctor. He was evaluated at the second hospital and released without additional treatment, he said.
The Final Bill
$12,872.99 for a 6-mile ambulance ride between hospitals: a $11,670.11 base rate, $737.16 for mileage, $314.45 for EKG monitoring, and $151.27 for “infection control.”
The Billing Problem: Surprise Bills Are Common With Ground Ambulances
Ground ambulance services are operated by a hodgepodge of private and public entities — with no uniform structure, or regulatory oversight, for billing — and most function outside insurance networks. Patients don’t typically have a choice of ambulance provider.
There are state and federal laws shielding patients from out-of-network ambulance bills, but none of those protections applied in Whitten’s case.
Whitten was insured under his father’s employer-sponsored health plan from Anthem Blue Cross. So when he received a nearly $13,000 bill months after his short transfer ride, he sent a photo of it to his dad.
Brian Whitten said the bills from the two hospitals — and the family’s out-of-pocket responsibility — were in line with what he had anticipated. But he was stunned by his son’s ambulance bill from AMR, one of the nation’s largest ambulance providers. Anthem Blue Cross denied the claim, saying the ambulance was out-of-network and required pre-authorization.
“It didn’t make a whole lot of sense to me, because the doctor is the one who put him in the ambulance,” Brian Whitten said. “It’s not like somehow he just decided, ‘Hey, can I take an ambulance ride?’”
Kristen Bole, a UCSF spokesperson, said in a statement that the health system’s standard of care is to stabilize patients and, when appropriate, transfer them to other medical facilities that are most appropriate to care for patients’ needs, adding that ambulance transfers between hospitals are standard practice.
While the medical system at large relies on negotiated prices for services, ambulance services operate largely outside of the competitive marketplace, said Patricia Kelmar, senior director of health care campaigns for PIRG, a nonpartisan consumer protection and good-government advocacy organization.
Ambulance transfers between hospitals to ensure the highest quality of care available are fairly common, Kelmar said. And with many hospitals being purchased and consolidated, it would follow that the number of ambulance transfers between facilities could increase as specialized medical units at any given hospital are downsized or eliminated, she said.
According to a study of private insurance claims data conducted in 2023, about 80% of ground ambulance rides resulted in out-of-network billing.
Generally, out-of-network providers may charge patients for the remainder of their bill after insurance pays. In some cases, patients can be on the hook even when they did not knowingly choose the out-of-network provider. These bills are known as “surprise” bills.
“It’s a financial burden, a significant financial burden,” said Kelmar, who is a member of the committee created to advise federal lawmakers on surprise bills and emergency ambulance transportation.
Eighteen states have implemented laws regulating surprise ambulance billing. A California law cracking down on surprise ambulance billing took effect on Jan. 1, 2024 — months after Jagdish Whitten’s ambulance ride.But Kelmar said those state laws don’t really help people with employer-sponsored insurance, because those plans are beyond state control — which is why federal legislation is so important, she said.
As of 2022, federal law protects patients from receiving some surprise bills, especially for emergency services. But while lawmakers included protections against air ambulance bills in the law, known as the No Surprises Act, they excluded ground ambulance transports.
The Resolution
Whitten’s father filed an insurance appeal on his son’s behalf, which Anthem granted. The insurer paid AMR $9,966.60.
Michael Bowman, a spokesperson for Anthem, said AMR had not submitted all the information it required to process the claim, leading to the initial denial. After consulting with AMR, Anthem paid its coverage amount, Bowman said.
But the insurer’s payment still left Whitten with a $2,906.39 bill for his out-of-network ambulance ride. Brian Whitten said he called an AMR customer service number several times to contest the remaining charges but was unable to bypass its automated system and speak with a human.
“I couldn’t find a way to talk to somebody about this bill other than how to pay it, and I didn’t want to pay it,” he said.
Unsuccessful and frustrated, Brian Whitten paid the remaining bill in January 2024, he said, concerned it would be turned over to a collection agency and hurt his son’s credit — and his well-being.
There was one more twist: He was shocked when he later reviewed his credit card statements and discovered that AMR had quietly but fully refunded his payment in October.
“It’s amazing that he got his money back,” Kelmar said. “That’s what’s shocking.”
In a statement, Suzie Robinson, vice president of revenue cycle management with AMR, said the company’s third-party billing agency regularly performs audits to ensure accuracy. An audit of Jagdish Whitten’s bill “revealed that the care provided did not meet the criteria for critical care,” Robinson said, which prompted the full refund.
Robinson said audits indicated fewer than 1% of its 4 million medical encounters annually are billed incorrectly.
The Takeaway
Robinson said patients who feel that AMR has billed them incorrectly should contact the company via email.
For patients in need of an ambulance in an emergency, there are few protections — and usually few options: Sometimes you don’t have a better choice than to get in.
Federal protections require that health plans cover certain surprise bills, with patients paying only what they would if they had received in-network care. Expanding those protections to ground ambulance bills would require Congress to act.
Ambulance providers deserve to be appropriately compensated for their vital role in our medical system, Kelmar said. But the system as it stands almost incentivizes providers to charge a higher rate, which can lead to surprise billing and financial hardship for patients and their families, she said.
Kelmar said she worries not just about the debt those bills create for consumers but also that people may decline vital ambulance transportation in an emergency, for fear of getting hit with an exorbitant bill.
“We just need to bring some sense back to the system,” she said.
Bill of the Month is a crowdsourced investigation by KFF Health News and The Washington Post’s Well+Being that dissects and explains medical bills. Since 2018, this series has helped many patients and readers get their medical bills reduced, and it has been cited in statehouses, at the U.S. Capitol, and at the White House. Do you have a confusing or outrageous medical bill you want to share? Tell us about it!
KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.
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