
Rapid Rise in Syphilis Hits Native Americans Hardest
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From her base in Gallup, New Mexico, Melissa Wyaco supervises about two dozen public health nurses who crisscross the sprawling Navajo Nation searching for patients who have tested positive for or been exposed to a disease once nearly eradicated in the U.S.: syphilis.
Infection rates in this region of the Southwest — the 27,000-square-mile reservation encompasses parts of Arizona, New Mexico, and Utah — are among the nation’s highest. And they’re far worse than anything Wyaco, who is from Zuni Pueblo (about 40 miles south of Gallup) and is the nurse consultant for the Navajo Area Indian Health Service, has seen in her 30-year nursing career.
Syphilis infections nationwide have climbed rapidly in recent years, reaching a 70-year high in 2022, according to the most recent data from the Centers for Disease Control and Prevention. That rise comes amid a shortage of penicillin, the most effective treatment. Simultaneously, congenital syphilis — syphilis passed from a pregnant person to a baby — has similarly spun out of control. Untreated, congenital syphilis can cause bone deformities, severe anemia, jaundice, meningitis, and even death. In 2022, the CDC recorded 231 stillbirths and 51 infant deaths caused by syphilis, out of 3,761 congenital syphilis cases reported that year.
And while infections have risen across the U.S., no demographic has been hit harder than Native Americans. The CDC data released in January shows that the rate of congenital syphilis among American Indians and Alaska Natives was triple the rate for African Americans and nearly 12 times the rate for white babies in 2022.
“This is a disease we thought we were going to eradicate not that long ago, because we have a treatment that works really well,” said Meghan Curry O’Connell, a member of the Cherokee Nation and chief public health officer at the Great Plains Tribal Leaders’ Health Board, who is based in South Dakota.
Instead, the rate of congenital syphilis infections among Native Americans (644.7 cases per 100,000 people in 2022) is now comparable to the rate for the entire U.S. population in 1941 (651.1) — before doctors began using penicillin to cure syphilis. (The rate fell to 6.6 nationally in 1983.)
O’Connell said that’s why the Great Plains Tribal Leaders’ Health Board and tribal leaders from North Dakota, South Dakota, Nebraska, and Iowa have asked federal Health and Human Services Secretary Xavier Becerra to declare a public health emergency in their states. A declaration would expand staffing, funding, and access to contact tracing data across their region.
“Syphilis is deadly to babies. It’s highly infectious, and it causes very severe outcomes,” O’Connell said. “We need to have people doing boots-on-the-ground work” right now.
In 2022, New Mexico reported the highest rate of congenital syphilis among states. Primary and secondary syphilis infections, which are not passed to infants, were highest in South Dakota, which had the second-highest rate of congenital syphilis in 2022. In 2021, the most recent year for which demographic data is available, South Dakota had the second-worst rate nationwide (after the District of Columbia) — and numbers were highest among the state’s large Native population.
In an October news release, the New Mexico Department of Health noted that the state had “reported a 660% increase in cases of congenital syphilis over the past five years.” A year earlier, in 2017, New Mexico reported only one case — but by 2020, that number had risen to 43, then to 76 in 2022.
Starting in 2020, the covid-19 pandemic made things worse. “Public health across the country got almost 95% diverted to doing covid care,” said Jonathan Iralu, the Indian Health Service chief clinical consultant for infectious diseases, who is based at the Gallup Indian Medical Center. “This was a really hard-hit area.”
At one point early in the pandemic, the Navajo Nation reported the highest covid rate in the U.S. Iralu suspects patients with syphilis symptoms may have avoided seeing a doctor for fear of catching covid. That said, he doesn’t think it’s fair to blame the pandemic for the high rates of syphilis, or the high rates of women passing infections to their babies during pregnancy, that continue four years later.
Native Americans are more likely to live in rural areas, far from hospital obstetric units, than any other racial or ethnic group. As a result, many do not receive prenatal care until later in pregnancy, if at all. That often means providers cannot test and treat patients for syphilis before delivery.
In New Mexico, 23% of patients did not receive prenatal care until the fifth month of pregnancy or later, or received fewer than half the appropriate number of visits for the infant’s gestational age in 2023 (the national average is less than 16%).
Inadequate prenatal care is especially risky for Native Americans, who have a greater chance than other ethnic groups of passing on a syphilis infection if they become pregnant. That’s because, among Native communities, syphilis infections are just as common in women as in men. In every other ethnic group, men are at least twice as likely to contract syphilis, largely because men who have sex with men are more susceptible to infection. O’Connell said it’s not clear why women in Native communities are disproportionately affected by syphilis.
“The Navajo Nation is a maternal health desert,” said Amanda Singer, a Diné (Navajo) doula and lactation counselor in Arizona who is also executive director of the Navajo Breastfeeding Coalition/Diné Doula Collective. On some parts of the reservation, patients have to drive more than 100 miles to reach obstetric services. “There’s a really high number of pregnant women who don’t get prenatal care throughout the whole pregnancy.”
She said that’s due not only to a lack of services but also to a mistrust of health care providers who don’t understand Native culture. Some also worry that providers might report patients who use illicit substances during their pregnancies to the police or child welfare. But it’s also because of a shrinking network of facilities: Two of the Navajo area’s labor and delivery wards have closed in the past decade. According to a recent report, more than half of U.S. rural hospitals no longer offer labor and delivery services.
Singer and the other doulas in her network believe New Mexico and Arizona could combat the syphilis epidemic by expanding access to prenatal care in rural Indigenous communities. Singer imagines a system in which midwives, doulas, and lactation counselors are able to travel to families and offer prenatal care “in their own home.”
O’Connell added that data-sharing arrangements between tribes and state, federal, and IHS offices vary widely across the country, but have posed an additional challenge to tackling the epidemic in some Native communities, including her own. Her Tribal Epidemiology Center is fighting to access South Dakota’s state data.
In the Navajo Nation and surrounding area, Iralu said, IHS infectious disease doctors meet with tribal officials every month, and he recommends that all IHS service areas have regular meetings of state, tribal, and IHS providers and public health nurses to ensure every pregnant person in those areas has been tested and treated.
IHS now recommends all patients be tested for syphilis yearly, and tests pregnant patients three times. It also expanded rapid and express testing and started offering DoxyPEP, an antibiotic that transgender women and men who have sex with men can take up to 72 hours after sex and that has been shown to reduce syphilis transmission by 87%. But perhaps the most significant change IHS has made is offering testing and treatment in the field.
Today, the public health nurses Wyaco supervises can test and treat patients for syphilis at home — something she couldn’t do when she was one of them just three years ago.
“Why not bring the penicillin to the patient instead of trying to drag the patient in to the penicillin?” said Iralu.
It’s not a tactic IHS uses for every patient, but it’s been effective in treating those who might pass an infection on to a partner or baby.
Iralu expects to see an expansion in street medicine in urban areas and van outreach in rural areas, in coming years, bringing more testing to communities — as well as an effort to put tests in patients’ hands through vending machines and the mail.
“This is a radical departure from our past,” he said. “But I think that’s the wave of the future.”
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.
Subscribe to KFF Health News’ free Morning Briefing.
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Fruit Is Healthy; Juice Isn’t (Here’s Why)
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Biochemist and “Glucose Goddess” Jessie Inchauspé wants us to understand the difference:
Stripped!
A glass of orange juice contains 22 grams of sugar (about six sugar cubes), nearly as much as a can of soda (27 grams).
Orange juice is widely perceived as healthy due to vitamin content—but if you add vitamins to soda, it won’t make it healthy, because the main health effect is still the sugar, leading to glucose spikes and many resultant health risks. The positive image of fruit juice is mainly from industry marketing.
In reality, Inchauspé advises, fruit juice should be treated like a dessert—consumed for pleasure, not health benefits.
But why, then, is fruit healthy if fruit juice is unhealthy? Isn’t the sugar there too?
Whole fruit contains plenty of fiber, which slows sugar absorption and prevents glucose spikes. Juicing strips it of its fiber, leaving water and sugar.
The American Heart Association suggests a sugar limit: 25g/day for women, 36g/day for men. One glass of orange juice nearly meets the daily limit for women. If that’s how you want to “spend” your daily sugar allowance, go for it, but do so consciously, by choice, knowing that the allowance is now “spent”.
In contrast, if you eat whole fruit, that basically “doesn’t count” for sugar purposes. The sugar is there, but the fiber more than offsets it, making whole fruit very good for blood sugars.
For more on all of this, enjoy:
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Which Sugars Are Healthier, And Which Are Just The Same?
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7 Mistakes Women Make Trying To Lose Fat Or Gain Muscle
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Here’s how to not sabotage your progress:
Traps to watch out for
Seven top common errors are…
- Not allowing your body to recover properly: you can only train as hard as you can recover from. Focus on sleep, hydration, and proper fueling instead of just workouts. Exercise is a good stressor, but you need recovery to handle intensity, otherwise your body won’t get stronger; it’ll just break down.
- Following restrictive diet trends: severely cutting macros (usually: very low carb or very low fat) can cause hormonal imbalances (including thyroid issues), inflammation, and low energy. Fuel your body based on your goals and activity level instead of demonizing carbs or fats.
- Neglecting high-intensity intervals: sprint work should be included weekly alongside zone 2 training. Short, intense intervals improve cardiovascular health and body recomposition, so they remain important no matter what else you’re doing.
- Creating too large a calorie deficit: eating too little slows your metabolism, reduces your energy, and thus causes plateaus. Aim for only a small deficit (if any) and make sure to fuel muscle repair (that takes calories; your body cannot break the laws of thermodynamics for you!)
- Failing to get enough protein: higher protein intake supports muscle retention, fat loss, and recovery. As we age, larger portions per meal are needed to trigger muscle-building responses.
- Avoiding low-rep, high-load strength training: lifting heavy builds muscle, strengthens metabolism, and helps long-term health. Fear of “getting bulky” holds many back from real progress.
- Relying mainly on steady-state cardio: cardio alone can burn calories short-term, but won’t build muscle or metabolic health as effectively as strength training. Balance is key.
For more on all of this, enjoy:
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Body Recomposition: How To Get Toned Quickly
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Women and Minorities Bear the Brunt of Medical Misdiagnosis
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Charity Watkins sensed something was deeply wrong when she experienced exhaustion after her daughter was born.
At times, Watkins, then 30, had to stop on the stairway to catch her breath. Her obstetrician said postpartum depression likely caused the weakness and fatigue. When Watkins, who is Black, complained of a cough, her doctor blamed the flu.
About eight weeks after delivery, Watkins thought she was having a heart attack, and her husband took her to the emergency room. After a 5½-hour wait in a North Carolina hospital, she returned home to nurse her baby without seeing a doctor.
When a physician finally examined Watkins three days later, he immediately noticed her legs and stomach were swollen, a sign that her body was retaining fluid. After a chest X-ray, the doctor diagnosed her with heart failure, a serious condition in which the heart becomes too weak to adequately pump oxygen-rich blood to organs throughout the body. Watkins spent two weeks in intensive care.
She said a cardiologist later told her, “We almost lost you.”
Watkins is among 12 million adults misdiagnosed every year in the U.S.
In a study published Jan. 8 in JAMA Internal Medicine, researchers found that nearly 1 in 4 hospital patients who died or were transferred to intensive care had experienced a diagnostic error. Nearly 18% of misdiagnosed patients were harmed or died.
In all, an estimated 795,000 patients a year die or are permanently disabled because of misdiagnosis, according to a study published in July in the BMJ Quality & Safety periodical.
Some patients are at higher risk than others.
Women and racial and ethnic minorities are 20% to 30% more likely than white men to experience a misdiagnosis, said David Newman-Toker, a professor of neurology at Johns Hopkins School of Medicine and the lead author of the BMJ study. “That’s significant and inexcusable,” he said.
Researchers call misdiagnosis an urgent public health problem. The study found that rates of misdiagnosis range from 1.5% of heart attacks to 17.5% of strokes and 22.5% of lung cancers.
Weakening of the heart muscle — which led to Watkins’ heart failure — is the most common cause of maternal death one week to one year after delivery, and is more common among Black women.
Heart failure “should have been No. 1 on the list of possible causes” for Watkins’ symptoms, said Ronald Wyatt, chief science and chief medical officer at the Society to Improve Diagnosis in Medicine, a nonprofit research and advocacy group.
Maternal mortality for Black mothers has increased dramatically in recent years. The United States has the highest maternal mortality rate among developed countries. According to the Centers for Disease Control and Prevention, non-Hispanic Black mothers are 2.6 times as likely to die as non-Hispanic white moms. More than half of these deaths take place within a year after delivery.
Research shows that Black women with childbirth-related heart failure are typically diagnosed later than white women, said Jennifer Lewey, co-director of the pregnancy and heart disease program at Penn Medicine. That can allow patients to further deteriorate, making Black women less likely to fully recover and more likely to suffer from weakened hearts for the rest of their lives.
Watkins said the diagnosis changed her life. Doctors advised her “not to have another baby, or I might need a heart transplant,” she said. Being deprived of the chance to have another child, she said, “was devastating.”
Racial and gender disparities are widespread.
Women and minority patients suffering from heart attacks are more likely than others to be discharged without diagnosis or treatment.
Black people with depression are more likely than others to be misdiagnosed with schizophrenia.
Minorities are less likely than whites to be diagnosed early with dementia, depriving them of the opportunities to receive treatments that work best in the early stages of the disease.
Misdiagnosis isn’t new. Doctors have used autopsy studies to estimate the percentage of patients who died with undiagnosed diseases for more than a century. Although those studies show some improvement over time, life-threatening mistakes remain all too common, despite an array of sophisticated diagnostic tools, said Hardeep Singh, a professor at Baylor College of Medicine who studies ways to improve diagnosis.
“The vast majority of diagnoses can be made by getting to know the patient’s story really well, asking follow-up questions, examining the patient, and ordering basic tests,” said Singh, who is also a researcher at Houston’s Michael E. DeBakey VA Medical Center. When talking to people who’ve been misdiagnosed, “one of the things we hear over and over is, ‘The doctor didn’t listen to me.’”
Racial disparities in misdiagnosis are sometimes explained by noting that minority patients are less likely to be insured than white patients and often lack access to high-quality hospitals. But the picture is more complicated, said Monika Goyal, an emergency physician at Children’s National Hospital in Washington, D.C., who has documented racial bias in children’s health care.
In a 2020 study, Goyal and her colleagues found that Black kids with appendicitis were less likely than their white peers to be correctly diagnosed, even when both groups of patients visited the same hospital.
Although few doctors deliberately discriminate against women or minorities, Goyal said, many are biased without realizing it.
“Racial bias is baked into our culture,” Goyal said. “It’s important for all of us to start recognizing that.”
Demanding schedules, which prevent doctors from spending as much time with patients as they’d like, can contribute to diagnostic errors, said Karen Lutfey Spencer, a professor of health and behavioral sciences at the University of Colorado-Denver. “Doctors are more likely to make biased decisions when they are busy and overworked,” Spencer said. “There are some really smart, well-intentioned providers who are getting chewed up in a system that’s very unforgiving.”
Doctors make better treatment decisions when they’re more confident of a diagnosis, Spencer said.
In an experiment, researchers asked doctors to view videos of actors pretending to be patients with heart disease or depression, make a diagnosis, and recommend follow-up actions. Doctors felt far more certain diagnosing white men than Black patients or younger women.
“If they were less certain, they were less likely to take action, such as ordering tests,” Spencer said. “If they were less certain, they might just wait to prescribe treatment.”
It’s easy to see why doctors are more confident when diagnosing white men, Spencer said. For more than a century, medical textbooks have illustrated diseases with stereotypical images of white men. Only 4.5% of images in general medical textbooks feature patients with dark skin.
That may help explain why patients with darker complexions are less likely to receive a timely diagnosis with conditions that affect the skin, from cancer to Lyme disease, which causes a red or pink rash in the earliest stage of infection. Black patients with Lyme disease are more likely to be diagnosed with more advanced disease, which can cause arthritis and damage the heart. Black people with melanoma are about three times as likely as whites to die within five years.
The covid-19 pandemic helped raise awareness that pulse oximeters — the fingertip devices used to measure a patient’s pulse and oxygen levels — are less accurate for people with dark skin. The devices work by shining light through the skin; their failures have delayed critical care for many Black patients.
Seven years after her misdiagnosis, Watkins is an assistant professor of social work at North Carolina Central University in Durham, where she studies the psychosocial effects experienced by Black mothers who survive severe childbirth complications.
“Sharing my story is part of my healing,” said Watkins, who speaks to medical groups to help doctors improve their care. “It has helped me reclaim power in my life, just to be able to help others.”
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.
Subscribe to KFF Health News’ free Morning Briefing.
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The Doctor Who Wants Us To Exercise Less, & Move More
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Today we’re talking about Dr. Rangan Chatterjee. He’s a medical doctor with decades of experience, and he wants us all to proactively stay in good health, rather than waiting for things to go wrong.
Great! What’s his deal?
Dr. Chatterjee advises that we take care of the following four pillars of good health:
- Relaxation
- Food
- Movement
- Sleep
And, they’re not in this order at random. Usually advice starts with diet and exercise, doesn’t it?
But for Dr. Chatterjee, it’s useless to try to tackle diet first if one is stressed-to-death by other things. As for food next, he knows that a good diet will fuel the next steps nicely. Speaking of next steps, a day full of movement is the ideal setup to a good night’s sleep—ready for a relaxing next day.
Relaxation
Here, Dr. Chatterjee advises that we go with what works for us. It could be meditation or yoga… Or it could be having a nice cup of tea while looking out of the window.
What’s most important, he says, is that we should take at least 15 minutes per day as “me time”, not as a reward for when we’ve done our work/chores/etc, but as something integrated into our routine, preferably early in the day.
Food
There are no grand surprises here: Dr. Chatterjee advocates for a majority plant-based diet, whole foods, and importantly, avoiding sugar.
He’s also an advocate of intermittent fasting, but only so far as is comfortable and practicable. Intermittent fasting can give great benefits, but it’s no good if that comes at a cost of making us stressed and suffering!
Movement
This one’s important. Well, they all are, but this one’s particularly characteristic to Dr. Chatterjee’s approach. He wants us to exercise less, and move more.
The reason for this is that strenuous exercise will tend to speed up our metabolism to the point that we will be prompted to eat high calorie quick-energy foods to compensate, and when we do, our body will rush to store that as fat, understanding (incorrectly) that we are in a time of great stress, because why else would we be exerting ourselves that much?
Instead, he advocates for building as much natural movement into our daily routine as possible. Walking more, taking the stairs, doing the gardening/housework.
That said, he does also advise some strength-training on a daily basis—bodyweight exercises like squats and lunges are top of his list.
Sleep
Here, aside from the usual “sleep hygiene” advices (dark cool room, fresh bedding, etc), he also advises we do as he does, and take an hour before bedtime as a purely wind-down time. In gentle lighting, perhaps reading (not on a bright screen!), for example.
Ready to start the next day, relaxed and ready to go.
If you’d like to know more about Dr. Chatterjee’s approach…
You can check out his:
If you don’t know where to start, we recommend the blog! It has a lot of guests there too, including Wim Hof, Gabor Maté, Mindy Pelz, and come to think of it, a lot of other people we’ve also featured ideas from previously!
Enjoy!
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Is cancer more common in women after IVF?
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Since fertility treatments such as in vitro fertilisation (IVF) began, there has been concern they could cause cancer.
Concerns have included whether aspects of treatment – such as taking hormonal medications, or puncturing the ovaries to retrieve eggs – could stimulate the growth of cancer cells.
Now, our new study, published on Wednesday, has found women who underwent fertility treatments had a comparable overall rate of cancer to similarly aged women.
However, there were some differences: they had more uterine, ovarian, and melanoma cancers, and fewer lung and cervical cancers. Let’s take a look at what this means.
Shaw Photography Co./Getty What we did
Our study wanted to find out whether women who underwent fertility treatments had a different rate of cancer from the general population.
We used individual records from Medicare and the Pharmaceutical Benefits Scheme to find women who had fertility treatments between 1991 and 2018. We linked this data to the Australian Cancer Database to find cancer diagnoses.
We found 417,984 women who received fertility treatments and followed them for about a decade on average:
- 274,676 women had treatments where the egg was removed from the women’s body (IVF and similar treatments)
- 120,739 women had treatments with a specialist where the egg was not removed (mainly intrauterine insemination)
- 175,510 women received a prescription for clomiphene citrate (also known as Clomid), a medication that induces ovulation.
One woman could have had multiple types of treatment.
Their median age (the midpoint of their ages) was 32–34 years. Compared to the general population, fewer lived in disadvantaged areas.
We compared these women’s rates of cancers to women in the general population, by statistically matching them on factors such as age and the state they lived in.
What we found
Women who received fertility treatments, either with or without egg removal, had close to the exact total number of cancers we would expect in the general population of women.
But women who used clomiphene citrate had 1.04 times the rate of cancer, or 8.6 extra cancers for every 100,000 women treated each year.
Rates of uterine cancer, ovarian cancer (except for those who used clomiphene citrate), and melanoma were 1.07–1.83 times higher, depending on treatment type. This means about three to seven more of these cancers for every 100,000 women treated each year.
This difference could be due to risk factors unrelated to the treatment. For example, endometriosis – a risk factor for infertility – is linked to ovarian cancer. Similarly, more Caucasian women receive fertility treatments, and fair skin is an established risk factor for melanoma.
Across all treatments rates of cervical cancer and lung cancer were 1.43–1.92 times lower. This translates to around two to six fewer cancers for every 100,000 treated women each year.
These decreases could be due to women receiving fertility treatment being less likely to smoke. Women who receive fertility treatment may also be more likely to be screened for cervical cancer, as clinicians often encourage them to get screened before treatment. But this is anecdotal – we don’t yet have data on this.
What this means
Overall, these findings are reassuring for women who have received or are planning fertility treatments.
The number of people undergoing fertility treatments is increasing worldwide. These findings deepen our understanding of the types of cancers diagnosed in women who receive fertility treatment.
Our study shows some cancers are more common in women who received fertility treatments than in the general population of women.
However, the absolute numbers of these cancers are small, similar to those observed for women using some other medical interventions (including the contraceptive pill).
It is normal to see differences in cancer risk in specific populations when compared to the general population.
So, does this mean IVF does not cause cancer?
This study design cannot determine if fertility treatments themselves cause or prevent cancer.
Though fertility treatments may contribute to cancer risk, women who receive fertility treatments have a different health and socio-demographic profile to the general population of women. These factors may affect cancer risk.
We did not have any data on why women were using fertility treatments to get pregnant and whether this is connected to their cancer risk. For example, we don’t know if they were receiving treatment for medical infertility, or for another reason (such as same-sex couples trying to conceive).
Our study also only followed women for around ten years, and the cancer risk profile may change as these women age.
The takeaway
As with every medical treatment, it is important for women and their health-care practitioners to make informed decisions before and after fertility treatment, including considering potential changes in cancer risk.
Women considering fertility treatment, and those who’ve used fertility treatment, should continue to participate in the routine cancer screening programs they’re eligible for.
If women are worried about their risk of cancer, they should consult their doctor to understand the steps they can take to reduce their risk.
Adrian Raymond Walker, Research Fellow, Centre for Big Data Research in Health, UNSW Sydney and Claire Vajdic, Professor, The Kirby Institute, UNSW Sydney
This article is republished from The Conversation under a Creative Commons license. Read the original article.
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Increase in online ADHD diagnoses for kids poses ethical questions
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In 2020, in the midst of a pandemic, clinical protocols were altered for Ontario health clinics, allowing them to perform more types of care virtually. This included ADHD assessments and ADHD prescriptions for children – services that previously had been restricted to in-person appointments. But while other restrictions on virtual care are back, clinics are still allowed to virtually assess children for ADHD.
This shift has allowed for more and quicker diagnoses – though not covered by provincial insurance (OHIP) – via a host of newly emerging private, for-profit clinics. However, it also has raised significant ethical questions.
It solves an equity issue in terms of rural access to timely assessments, but does it also create new equity issues as a privatized service?
Is it even feasible to diagnose a child for a condition like ADHD without meeting that child in person?
And as rates of ADHD diagnosis continue to rise, should health regulators re-examine the virtual care approach?
Ontario: More prescriptions, less regulation
There are numerous for-profit clinics offering virtual diagnoses and prescriptions for childhood ADHD in Ontario. These include KixCare, which does not offer the option of an in-person assessment. Another clinic, Springboard, makes virtual appointments available within days, charging around $2,600 for assessments, which take three to four hours. The clinic offers coaching and therapy at an additional cost, also not covered by OHIP. Families can choose to continue to visit the clinic virtually during a trial stage with medications, prescribed by a doctor in the clinic who then sends prescribing information back to the child’s primary care provider.
For-profit clinics like these are departing from Canada’s traditional single-payer health care model. By charging patients out-of-pocket fees for services, the clinics are able to generate more revenue because they are working outside of the billing standards for OHIP, standards that set limits on the maximum amount doctors can earn for providing specific services. Instead many services are provided by non-physician providers, who are not limited by OHIP in the same way.
Need for safeguards
ADHD prescriptions rose during the pandemic in Ontario, with women, people of higher income and those aged 20 to 24 receiving the most new diagnoses, according to research published in January 2024 by a team including researchers from the Centre for Addictions and Mental Health and Holland Bloorview Children’s Hospital. There may be numerous reasons for this increase but could the move to virtual care have been a factor?
Ontario psychiatrist Javeed Sukhera, who treats both children and adults in Canada and the U.S., says virtual assessments can work for youth with ADHD, who may receive treatment quicker if they live in remote areas. However, he is concerned that as health care becomes more privatized, it will lead to exploitation and over-diagnosis of certain conditions.
“There have been a lot of profiteers who have tried to capitalize on people’s needs and I think this is very dangerous,” he said. “In some settings, profiteering companies have set up systems to offer ADHD assessments that are almost always substandard. This is different from not-for-profit setups that adhere to quality standards and regulatory mechanisms.”
Sukhera’s concerns recall the case of Cerebral Inc., a New York state-based virtual care company founded in 2020 that marketed on social media platforms including Instagram and TikTok. Cerebral offered online prescriptions for ADHD drugs among other services and boasted more than 200,000 patients. But as Dani Blum reported in the New York Times, Cerebral was accused in 2023 of pressuring doctors on staff to prescribe stimulants and faced an investigation by state prosecutors into whether it violated the U.S. Controlled Substances Act.
“At the start of the pandemic, regulators relaxed rules around medical prescription of controlled substances,” wrote Blum. “Those changes opened the door for companies to prescribe and market drugs without the protocols that can accompany an in-person visit.”
Access increased – but is it equitable?
Virtual care has been a necessity in rural areas in Ontario since well before the pandemic, although ADHD assessments for children were restricted to in-person appointments prior to 2020.
But ADHD assessment clinics that charge families out-of-pocket for services are only accessible to people with higher incomes. Rural families, many of whom are low income, are unable to afford thousands for private assessments, let alone the other services upsold by providers. If the private clinic/virtual care trend continues to grow unchecked, it may also attract doctors away from the public model of care since they can bill more for services. This could further aggravate the gap in care that lower income people already experience.
This could further aggravate the gap in care that lower income people already experience.
Sukhera says some risks could be addressed by instituting OHIP coverage for services at private clinics (similar to private surgical facilities that offer mixed private/public coverage), but also with safeguards to ensure that profits are reinvested back into the health-care system.
“This would be especially useful for folks who do not have the income, the means to pay out of pocket,” he said.
Concerns of misdiagnosis and over-prescription
Some for-profit companies also benefit financially from diagnosing and issuing prescriptions, as has been suggested in the Cerebral case. If it is cheaper for a clinic to do shorter, virtual appointments and they are also motivated to diagnose and prescribe more, then controls need to be put in place to prevent misdiagnosis.
The problem of misdiagnosis may also be related to the nature of ADHD assessments themselves. University of Strathclyde professor Matthew Smith, author of Hyperactive: The Controversial History of ADHD, notes that since the publication of Diagnostic and Statistical Manual of Mental Disorders in 1980, assessment has typically involved a few hours of parents and patients providing their subjective perspectives on how they experience time, tasks and the world around them.
“It’s often a box-ticking exercise, rather than really learning about the context in which these behaviours exist,” Smith said. “The tendency has been to use a list of yes/no questions which – if enough are answered in the affirmative – lead to a diagnosis. When this is done online or via Zoom, there is even less opportunity to understand the context surrounding behaviour.”
Smith cited a 2023 BBC investigation in which reporter Rory Carson booked an in-person ADHD assessment at a clinic and was found not to have the condition, then had a private online assessment – from a provider on her couch in a tracksuit – and was diagnosed with ADHD after just 45 minutes, for a fee of £685.
What do patients want?
If Canadian regulators can effectively tackle the issue of privatization and the risk of misdiagnosis, there is still another hurdle: not every youth is willing to take part in virtual care.
Jennifer Reesman, a therapist and Training Director for Neuropsychology at the Chesapeake Center for ADHD, Learning & Behavioural Health in Maryland, echoed Sukhera’s concerns about substandard care, cautioning that virtual care is not suitable for some of her young clients who had poor experiences with online education and resist online health care. It can be an emotional issue for pediatric patients who are managing their feelings about the pandemic experience.
“We need to respect what their needs are, not just the needs of the provider,” says Reesman.
In 2020, Ontario opted for virtual care based on the capacity of our health system in a pandemic. Today, with a shortage of doctors, we are still in a crisis of capacity. The success of virtual care may rest on how engaged regulators are with equity issues, such as waitlists and access to care for rural dwellers, and how they resolve ethical problems around standards of care.
Children and youth are a distinct category, which is why we had restrictions on virtual ADHD diagnosis prior to the pandemic. A question remains, then: If we could snap our fingers and have the capacity to provide in-person ADHD care for all children, would we? If the answer to that question is yes, then how can we begin to build our capacity?
This article is republished from healthydebate under a Creative Commons license. Read the original article.
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