Laura Baker, a retired special education teacher from Santa Barbara, California, was 18 months into a brain cancer diagnosis when she typed out a distressing Facebook post in the fall of 2019.
“I am currently having some concerning symptoms and nobody seems to know what to do,” Baker, then 57, wrote.
What Baker really needed, she said, was a CT scan of her head. Her local hospital had a working CT scanner, but it wasn’t available to her.
The reason: her size. Even though she was “well under” the scanner machine’s advertised weight limit of 625 pounds, Baker wrote, it still couldn’t handle someone with her frame.
Baker had been heavy for most of her life. She suffered from two medical disorders that caused extreme swelling in her midsection, hips and legs.
In her Facebook post, she asked for help raising money for a portable CT scanner. She said she had even called around to manufacturers but was told none were available.
“So frustrating. So humiliating,” she wrote.
Baker died nine months later, in July 2020, leaving behind her husband, John, and daughter, Katie. It’s not known if a CT scan would have helped to prolong her life, but to Baker and her loved ones, the situation amounted to yet another example of how the nation’s health care system fails people like her.
“Her story is just heartbreaking,” said Baker’s sister, Karla Rogers.
There are a lot of Laura Bakers in this country — people who face a gantlet of obstacles and indignities when they seek medical care as a result of their size.
The physical hurdles range from blood pressure cuffs that don’t fit to exam tables that are too small to scanning machines that cannot accommodate them, according to interviews with several people who have obesity.
Beyond the inadequate equipment, people who are very heavy say doctors often fail to look past their size, offering rote responses — they must lose weight — no matter their symptoms. Experts say this dynamic leads to serious health problems going undiagnosed and obese people refraining from seeing doctors altogether until their conditions become dire.
“This country is facing what I would call an epidemic, but we still have a health care system that’s not prepared to handle this population,” said Dr. Robert Kushner, an obesity medicine specialist at Northwestern University’s Feinberg School of Medicine.
At least 1 in 3 Americans have obesity, and the number is climbing.
The obesity rate for adult Americans, which has been rising for decades, reached a new high of 42 percent in 2017-18, according to a 2020 report by the Centers for Disease Control and Prevention. Many don’t face the kind of challenges Laura Baker did, but experts said those who have severe obesity — a body mass index of 40 or higher, which ticked up to 9.2 percent of adults — likely do encounter obstacles at routine doctor visits and in getting access to medical diagnostic equipment such as MRI machines.
As Americans’ bodies have expanded, the medical profession has been slow to evolve, leading to a shortage of doctors who are equipped to treat people of size.
“Most doctors are inadequately prepared and uneducated on how to approach someone with obesity,” Kushner said.
The challenge in finding a capable doctor, with an accommodating office, is an open secret among people who are heavy.
Patty Nece, a lawyer from Virginia, recalled when a routine mammogram was delayed, awkwardly, because the protective vest didn’t fit. The experience was so demeaning that she didn’t get another mammogram for 15 years, after two friends were diagnosed with breast cancer.
“I didn’t want to go through the humiliation of it all,” said Nece, who is chair of the Obesity Action Coalition’s board of directors.
Then there was the time she went to see an orthopedist after developing intense pain in her hip.
“Let me cut to the chase,” he told her, according to Nece. “You need to lose weight.”
It was only when Nece went to see a different doctor that she learned that the pain had nothing to do with her size. She had progressive scoliosis.
Michelle Vicari, a writer from California, has an indelible memory of what happened during a gynecologist appointment when she was 18.
A nurse handed Vicari a paper gown but it didn’t fit around her wide frame. The nurse sighed and brought her a different one, Vicari said, but that didn’t fit either.
“Just put one on the front and one on the back,” the nurse said in a disgusted tone, according to Vicari. “We don’t have gowns for big girls like you.”
Vicari, now 49, didn’t go back to a gynecologist for nine years. She suffered through untreated endometriosis — the growth of uterine tissue outside the uterus, which caused severe pain and excessive bleeding during periods — until she finally saw a different doctor.
“I wish I could say that was a one-off experience, but similar negative experiences and treatment by health care professionals kept me from going to any doctor unless it was a dire emergency for years,” Vicari said in an email.
Obesity was long viewed in this country as a moral failing, a product of people being lazy and careless with their diets. Armed with new research, obesity experts say it should be treated as a medical condition, such as diabetes, regardless of its cause.
But medical schools still fall short of providing the necessary training in treating a condition that affects upward of 70 million Americans, experts say.
“Four out of 10 patients you see in your practice are going to have this disease,” said Kushner, the Northwestern University obesity expert.
“But training about the science and practice of obesity is inadequate in most medical schools. That leaves the next generation of doctors unprepared to address one of the most consequential health problems we are facing in the twenty-first century.”
The American Board of Obesity Medicine, which was founded 10 years ago to help doctors learn how to treat obesity, began offering certification tests in 2012. Since then, a total of 5,242 physicians from the U.S. and Canada have passed its board certification exam.
Four states — Idaho, Montana, Vermont and Wyoming — have no more than 10 board-certified physicians, according to data provided by the American Board of Obesity Medicine.
Dr. Rekha Kumar, medical director of the American Board of Obesity Medicine and an associate professor of clinical medicine at Weill Cornell Medicine, said the U.S. has nowhere close to enough doctors trained in obesity medicine.
She and other obesity experts said they believe more physicians would focus on treating this population were it not for a powerful disincentive: It doesn’t pay well enough.
Many insurance companies are reluctant to provide coverage for the kinds of treatments that can be beneficial, as well as for obesity counseling sessions themselves.
“A big reason physicians don’t do it is we have to get paid and the reimbursements aren’t good,” Kumar said. “Most doctors who want to practice obesity medicine really struggle with a successful business model.”
Fat bias in medicine
The issue of fat bias in the health care industry received a burst of attention in 2018 after the death of a Canadian woman whose obituary railed against her experience with doctors.
“Over the past few years of feeling unwell she sought out medical intervention and no one offered any support or suggestions beyond weight loss,” read the obituary for Ellen Maud Bennett, who died at 64 after being diagnosed with inoperable cancer.
The obit sparked a flood of social media posts. Ali Thompson, a fat activist and writer based in Philadelphia, posted a message saying Bennett’s experience is why people like her have a “kind of whisper network” to trade the names of doctors who don’t shame them.
“They are rare precious jewels,” Thompson wrote.
In an email, she said doctor visits almost always “devolve into an interrogation about eating and exercise” no matter the reason for her appointment.
“And I know no matter what I say, the medical professional will assume I am a liar,” Thompson added. “It’s not only obvious from how they behave, but some of them feel very free saying it to my face.”
Experts note that people who are very heavy are far more prone to diabetes and heart and respiratory issues than average-size individuals, but obesity isn’t always caused by poor diets and lack of exercise.
Sarah Bramblette, who lives outside Miami, has been heavy since she was a young girl. She suffers from the same two chronic conditions that Baker had: lymphedema, which causes swelling due to the build-up of lymphatic fluid; and lipedema, which causes fatty tissue to accumulate in the arms and legs of an otherwise healthy person.
Both disorders predominantly affect women, are difficult to diagnose and often lead to very large bodies that don’t respond to bariatric surgery or changes in diet or exercise.
Bramblette said she’s battled for years to get good medical care despite her size. She now needs a procedure called a cardiac ablation to correct a heart arrhythmia, but she can’t get the surgery because she exceeds the maximum weight limit for the surgical table.
And that’s not her only issue.
About three years ago, a mammogram came back negative but her doctor suggested that she get an MRI as an extra precaution due to her family history. Her mother is a breast cancer survivor, and several other family members have died from the disease.
But when she went to schedule the procedure, she found it wasn’t available to her. The MRI machine has a weight limit of 250 pounds.
“We’re constantly hearing that obesity increases your risk of cancer, and yet you can’t get cancer screening at my size,” Bramblette said.
Before she was diagnosed with lymphedema and lipedema, Valerie Mills was so desperate to get an MRI to check on a heart problem that she called around to local vets near her home in western Georgia.
“I figured I’d just go to where they do horses and cows,” said Mills, 53, who lives in the city of LaGrange.
But the vets turned her down, she said, saying they were prohibited from using their machines on humans.
“I even had a friend reach out to Sea World,” said Mills. “They were like, ‘No, we can’t do it.’”
A series of medical hurdles
Laura Baker was diagnosed with brain cancer in April 2018 after she had a severe seizure. The diagnosis capped a brutal stretch for Baker, who spent 22 years teaching special needs children in the Santa Barbara School district.
In early 2017, Baker lost the ability to stand on her own after years of battling osteoarthritis in her knees. She weighed about 540 pounds at the time, and an orthopedic surgeon told her she needed to lose weight before he would agree to do a knee replacement, according to her husband.
She got around in a special wheelchair but it was too wide to fit into the doors of many doctors’ offices and medical clinics.
“I carried an Allen wrench with me in case I needed to remove an armrest to wrestle her wheelchair through the door of an older office,” said her husband, John, an engineer.
Baker had bariatric surgery in the summer of 2017 in the hope that it would help her lose enough weight to qualify for a knee replacement. But like many people who suffer from lipedema and lymphedema, the surgery didn’t produce dramatic results. And then came her brain cancer diagnosis.
A series of medical hurdles soon followed.
A radiation oncologist told her that she was not a candidate for radiation treatment because of her weight, according to her husband.
She lost most of the vision in her left eye due to a cataract, which likely could have been corrected through surgery. But her husband said she wasn’t able to visit her ophthalmologist because his office doors were too narrow for her wheelchair.
Her lack of access to a CT scan was particularly aggravating, according to her family. A portable CT scanner was used to diagnose her brain cancer, but the machine broke down soon after and was not replaced, according to John Baker. Her local hospital’s newer CT scanner couldn’t accommodate her, and she found none in her area that could.
“Wondering whether some new tumor was growing inside her skull and not being able to get a scan was just an ongoing nightmare,” John Baker said.
Dr. Karen Herbst, an endocrinologist who started treating Baker in 2009, said she was frustrated when John told her about Laura’s struggles to get a scan. Herbst had previously helped Laura Baker get access to inpatient care and treatments, including a type of manual work that reduces fluid build-up in the tissues. But as her condition worsened in the ensuing years, Baker’s care options grew more limited.
“You can’t make any money taking care of somebody with lymphedema in the inpatient setting nowadays,” Herbst said. “That leaves women like Laura with no help.”
In her 2019 Facebook post, Baker didn’t hide her despair toward the way the U.S. health care system treats people of a certain size.
“I am so very frustrated with the lack of understanding in the medical profession on how to deal with and accommodate the fat patient,” Baker wrote. “Boy, can I understand why so many fat people just stay at home and don’t go to the doctor until they have no choice. This is just wrong.”