According to a recent study published in Frontiers in Cardiovascular Medicine, the risk of developing myocarditis is seven times higher with a COVID infection than with the COVID vaccine, by scientists. Patients with myocarditis can experience chest pains, shortness of breath or an irregular heartbeat. In severe cases, the inflammation can lead to heart failure and death.
“Our findings show that the risk of myocarditis from being infected by COVID is far greater than from getting the vaccine,” said Dr Navya Voleti, a resident physician at Penn State College of Medicine. “Moving forward, it will be important to monitor the potential long-term effects in those who develop myocarditis.”
Typically resulting from viral infection, myocarditis is a known complication of SARS-CoV-2 infection, and heart complications have been associated with mRNA COVID vaccination – particularly myocarditis in teenage boys. However, the relative risk of myocarditis due to vaccines and infections had not been clearly established.
The researchers conducted the largest study to date on the risk of developing myocarditis as a result of SARS-CoV-2 infection vs experiencing inflammation after COVID vaccination. The researchers compared vaccinated and unvaccinated COVIP patients to uninfected controls. The myocarditis risk was 15 times higher in COVID patients, regardless of vaccination status, compared to individuals who did not contract the virus.
Next, the researchers separately compared the rates of myocarditis in those who received the vaccines to those in unvaccinated individuals. According to the findings, the rates of myocarditis in people who were vaccinated against COVID were only twofold higher than in unvaccinated people.
Based on all the findings, the researchers concluded that the risk of myocarditis due to COVID was seven times higher than the risk related to the vaccines.
Investigators conducted a systematic review and meta-analysis of 22 studies published worldwide from December 2019 through May 2022. The studies included nearly 58 million patients who reported cardiac complications and belonged to one of two groups: the 55.5 million who were vaccinated against COVID compared to those who were not vaccinated (vaccination group), and the 2.5 million who contracted the virus compared to those who did not contract the virus (COVID group).
In the vaccination group, the researchers separately compared the risk of myocarditis for various COVID vaccines. The median age of the study population was 49 years; 49% were men; and the median follow-up time after infection or COVID vaccination was 28 days.
The researchers found that among those diagnosed with myocarditis after receiving the vaccine or having COVID, the majority (61%) were men. Of patients diagnosed with myocarditis in both vaccination and COVID groups, 1.07% were hospitalised and 0.015% died.
“COVID infection and the related vaccines both pose a risk for myocarditis. However, the relative risk of heart inflammation induced by COVID infection is substantially greater than the risk posed by the vaccines,” said Dr. Paddy Ssentongo, a resident physician in the Department of Medicine at Penn State Health Milton S. Hershey Medical Center and the lead author of the study. “We hope our findings will help mitigate vaccine hesitancy and increase vaccine uptake.”
Locked fingers, known as ‘trigger finger’, are more common among people with diabetes than in the general population, finds a study published in Diabetes Care. A study led by Lund University in Sweden shows that the risk of being affected increases with hyperglycaemia.
Trigger finger means that one or more fingers, often the ring finger or thumb, ends up in a bent position that is difficult to straighten out. It is due to the thickening of tendons, which bend the finger, and their connective tissue sheath, which means that the finger becomes fixed in a bent position towards the palm. It is a painful condition that can often be treated with cortisone injections, but sometimes requires surgery.
“At the hand surgery clinic, we have noted for a long time that people with diabetes, both type 1 and type 2, are more often affected by trigger finger. Over 20 percent of those who require surgery for this condition are patients who have, or will develop, diabetes,” says Mattias Rydberg, doctoral student at Lund University, resident physician at Skåne University Hospital and first author of the study.
To study whether blood sugar dysregulation increases the risk of trigger finger, the researchers examined two registers. The prevalence of trigger finger in the general population 1–1.5%, but is 10-15% among those who have diabetes, particularly in type 1 diabetes.
The study added to the evidence for a link between blood sugar and trigger finger. Hyperglycaemia increased the risk of being affected by trigger finger among both men and women in the groups with type 1 diabetes and type 2 diabetes. The group of men with the worst regulated blood sugar (HbA1c > 64) had up to 5 times as high a risk of being affected than men with well-regulated (HbA1c < 48) blood sugar.
“However, we can’t know for certain if any of the groups seek healthcare more often than others which could be a factor that affects the results,” said Mattias Rydberg.
The mechanism, or mechanisms, behind the increased risk are unknown, but there are theories that high blood sugar makes both the flexor tendons and their connective tissue sheaths thicker, thus causing them to lock more easily. It was previously known that those with unregulated blood sugar are more prone to nerve entrapments in the hand.
“It is important to draw attention to the complications from diabetes and how they can arise in order to discover them early, which enables faster treatment and thus a better outcome. In addition to nerve compressions and trigger finger, there may also be a link with thickening of the connective tissue in the palm (Dupuytren’s contracture), impairment of joint movement and the risk of arthritis at the base of the thumb. The mechanisms behind these complications probably differ in the case of diabetes. The results of this study are interesting, as we can show that blood sugar dysregulation has a connection with the development of trigger finger,” said Lars B. Dahlin, professor at Lund University and consultant in hand surgery at Skåne University Hospital.
Future research will measure the effectiveness of operating on patients with diabetes who are affected by trigger finger.
“From our experience at the clinic, surgery goes well and there are few complications, but it takes a little longer for patients with type 1 and type 2 diabetes to regain full movement and function. We want to investigate this hypothesis further. Another interesting idea is to see if trigger finger could be a warning signal for type 2 diabetes. It is far from all who are affected by trigger finger that have diabetes, but it would be interesting to see if by using modern registers we can discover those who are in the risk zone for developing diabetes,” concluded Mattias Rydberg.
A study in the Journal of Hospital Medicine found that the general public does not have a good grasp of the medical jargon that physicians typically use in their introductions to patients. They found speciality names and seniority titles are sources of misunderstanding.
“Jargon is pervasive in medicine and the opportunity for misunderstanding due to this terminology begins the instant that physicians introduce themselves to patients,” explained Emily Hause, MD, MPH, a paediatric rheumatology fellow at the U of M Medical School. “We found that most people can’t define specialty names nor correctly rank medical seniority titles. Physicians should describe their medical specialty and role on the patient’s care team in plain language to help reduce this source of potential confusion.”
Volunteer participants at the 2021 Minnesota State Fair completed an electronic survey that measured their knowledge of medical specialties and titles. Of the 14 specialties included in the survey, six specialties were correctly defined by less than half of the respondents:
Neonatologists: 48%
Pulmonologists: 43%
Hospitalists: 31%
Intensivists: 29%
Internists: 21%
Nephrologists: 20%
When asked to rank medical roles, only 12% of participants correctly placed these titles in order: medical student, intern, senior resident, fellow and attending.
Further research is suggested to survey knowledge on additional specialties and obtain more demographic information.
As work hours increase, new doctors are at greater risk of depression, according to a study in the New England Journal of Medicine. Working 90 or more hours a week was associated with changes in depression symptom scores three times larger than the change in depression symptoms among those working 40 to 45 hours a week.
Additionally, compared to those working normal hours, those working more hours had greater odds of scores equating to moderate to severe depression.
By means of advanced statistical methods, the researchers emulated a randomised clinical trial using data on more than 17 000 first-year medical residents, accounting for many other factors in the doctors’ personal and professional lives. Less than 5% met the criteria for moderate to severe depression.
They found a “dose response” effect between hours worked and depression symptoms, with an average symptom increase of 1.8 points on a standard scale for those working 40 to 45 hours, ranging up to 5.2 points for those working more than 90 hours. They conclude that, among all the stressors affecting physicians, working a large number of hours is a major contributor to depression.
The data come from the Intern Health Study, based at the Michigan Neuroscience Institute and the Eisenberg Family Depression Center. Each year, the study recruits new medical school graduates to take part in a year of tracking of their depressive symptoms, work hours, sleep and more while they complete the first year of residency, also called the intern year.
The impact of high numbers of work hours
Though the interns in the study reported a wide range of previous-week work hours, the most common work hour levels were between 65 to 80 hours per week.
The authors say their findings point to a clear need to further reduce the number of hours residents work each week on average.
“This analysis suggests strongly that reducing the average number of work hours would make a difference in the degree to which interns’ depressive symptoms increase over time, and reduce the number who develop diagnosable depression,” said Amy Bohnert, PhD, the study’s senior author and a professor at the U-M Medical School. “The key thing is to have people work fewer hours; you can more effectively deal with the stresses or frustrations of your job when you have more time to recover.”
Yu Fang, MSE, the study’s lead author and a research specialist at the Michigan Neuroscience Institute, notes that the number of hours is important, but so are the training opportunities that come from time spent in hospitals and clinics. “It is important to use the time spent at work for supervised learning opportunities, and not low-value clinical service tasks,” she says.
Information about alcohol abuse gathered during the COVID lockdown may prompt further changes to the Liquor Amendment Bill, says the Department of Trade, Industry and Competition. The Bill has been on hold since 2018.
The Bill seeks to amend the National Liquor Act of 2003, by tightening alcohol restrictions and advertising and regulating where alcohol is sold.
Spokesperson Bongani Lukhele said the Bill was under review by the department.
“During the Covid-19 pandemic, it became more apparent that the problem of liquor abuse is quite huge in South Africa and requires more concerted measures, and that the Bill may not address the scale of the problem as the problem requires a concerted effort in government,” said Lukhele.
He said the department would reintroduce the bill to Parliament. Lukhele said as well as legislation to address liquor use, there was a need for health, education and behaviour issues to be addressed as well.
“Provincial laws must also be reviewed as it impacts directly on the retail trade,” Lukhele added.
Meanwhile, lobby groups are growing impatient with delays in the implementation of the bill.
Maurice Smithers, director of the Southern African Alcohol Policy Alliance in South Africa, said the Liquor Act had been reviewed in 2015 and found to be inadequate and inconsistent with the World Health Organisation’s Global Strategy to reduce the harmful use of alcohol. The Global Strategy suggests three priorities: reducing the availability of alcohol, increasing its cost, and limiting or banning marketing.
As a result, changes were proposed in the Liquor Bill, drafted in 2016, including:
restricting advertising of alcohol on public platforms;
increasing the legal drinking age from 18 to 21 years;
regulating specific trading days and hours for alcohol to be distributed and manufactured; and
placing liability on alcohol retailers and manufacturers for harm related to the contravention of regulations.
The amendments also propose banning alcohol advertising on radio and television at certain times and on billboards less than 100 metres away from junctions, street corners and traffic circles.
The bill was approved by Cabinet for public comment in 2016.
Smithers told GroundUp that the socio-economic and health problems associated with alcohol would worsen over time if the Bill and other legislation was not passed.
“The overall cost to society of such harm will continue to burden the state and divert resources from other delivery areas. Some specific consequences are that petrol stations are now applying for licences, something they would not be able to do if the bill were passed.”
“The current proposals in the Basic Education Laws Amendment Bill which will allow schools to have alcohol at schools and at school functions off school premises for fund-raising purposes would also not be allowed if the bill were passed,” said Smithers.
Basic Education Minister Angie Motshekga has said the department supports zero tolerance of alcohol at schools, but schools do sell alcohol during fund-raising and do hire out halls for functions where alcohol is consumed. She said the clauses in the Basic Education Laws Amendment Act are intended only to regulate this.
Onesisa Mtwa, innovation manager at the DG Murray Trust, told GroundUp that stronger regulations were necessary to address and reduce harmful patterns of consumption such as heavy and binge drinking.
In its 2018 Global Survey on Alcohol and Health, the WHO indicated that in 2016, South African drinkers over the age of 15 years consumed, on average, 64.6 grams of pure alcohol per day.
The data further showed that South African drinkers over 15 years old consumed 29.9 litres of pure alcohol in a year —the third highest consumption in Africa.
Citing a 2017 by economics-based consulting firm Genesis Analytics, Mtwa said the Bill could reduce alcohol consumption by between 3.2% and 7.4% which would, in turn, reduce public health costs by R1.9 billion per year.
“Despite the industry’s claims that this Bill will destroy the industry,” Mtwa said, the impact assessment suggested that South Africa’s gross domestic product would drop by less than 1%.
A study by the University of Cape Town and the Medical Research Council found that alcohol bans during COVID were strongly associated with a large drop in unnatural deaths (murders, vehicle collisions, suicides and accidents).
Researchers looked at death data during alcohol restrictions and curfews under the national lockdown from the end of December 2019 to late April 2021. The drop in unnatural deaths associated with a full alcohol ban ranged from 42 deaths per day under a curfew of 4 to 7 hours to 74 per day under hard lockdown.
Mtwa said implementing the bill would need “extensive” national and provincial cooperation.
“Some areas of regulation such as retail sales and liquor licences lie with provinces, while liability issues, manufacturers and the drinking age would be regulated by the national government. This highlights the need for a whole-of-government approach to reducing alcohol-related harm,” she adds.
Smithers said although the bill is not a silver bullet, it would send a signal to society that the government is serious about addressing the issue of alcohol-related harm.
“It’s not a perfect bill and it won’t result in a perfect act, but it is a step in the right direction,” he said.
A new longitudinal study of more than 23 million people in the US concludes that some commonly used and abused drugs pose previously unidentified risks for the development of atrial fibrillation (AF). The results appeared in the European Heart Journal.
The researchers analysed data from diagnostic codes from every hospital admission, emergency room visit and medical procedure in California for the years 2005 through 2015, identifying nearly one million people without preexisting AF, but who later developed AF during these years.
They found 132 834 patients used cannabis, 98 271 used methamphetamine, 48 700 used cocaine, and 10 032 used opiates. In the study, the researchers found that marijuana users had a 35% increased likelihood of later developing AF.
“Despite exhibiting a weaker association with incident AF than the other substances, cannabis use still exhibited an association of similar or greater magnitude to risk factors like dyslipidaemia, diabetes mellitus, and chronic kidney disease. Furthermore, those with cannabis use exhibited similar relative risk of incident AF as those with traditional tobacco use,” the study authors reported.
“To my knowledge, this is the first study to look at marijuana use as a predictor of future atrial fibrillation risk,” said principal investigator Gregory Marcus, MD, MAS, a UCSF professor of Medicine with the Division of Cardiology.
AF is an abnormally disordered pumping rhythm arising from electrical disturbances in the atria. In severe cases of faulty atrial pumping, clots may form in the atria, and then break off into the bloodstream and cause deadly strokes. AF-related strokes cause more than 150 000 US deaths each year.
Unlike cocaine or methamphetamine use, both stimulants previously known to sometimes lead to sudden cardiac death due to profound disruptions in the orderly electrical signalling and pumping within ventricles there is no demonstrated mechanism whereby marijuana use causes heart arrhythmias.
A study published in PLOS ONE suggests that interacting with moderately active people is an important factor that could influence sedentary people into becoming more active. The researchers developed a mathematical model that takes into account the influence of social interactions on community exercise trends.
To help address shortfalls in people getting recommended levels of exercise, Ensela Mema of Kean University in Union, New Jersey, and colleagues drew on previous research showing that social interactions with peers can play a key role in boosting physical activity within a community. In line with that knowledge, they developed a mathematical model that simulates how social interactions can affect a population’s exercise trends over time. The model incorporates data from the US Military Academy.
The model simulations showed that, without social interactions, populations experienced a long-term decrease in physically active individuals, and sedentary behaviour began to dominate. However, when the simulations included social interactions between sedentary and moderately active people, sedentary populations became more physically active in the long term. Still, in simulations where moderately active people became more sedentary over time, overall physical activity trends plummeted.
While these simulations were not validated with real-world data, the researchers say they provide new insights that could inform public health efforts to boost community physical activity levels. The researchers outline a number of recommendations for such efforts, such as social activities designed to boost interactions between sedentary and moderately active people.
The researchers said that more research will be needed to better understand the balance between encouraging exercise among sedentary people while retaining activity levels in moderately active people.
The authors added: “We have traditionally directed physical activity interventions by engaging sedentary individuals to become more active. Our model suggests that focusing on the moderately active population to sustain their activity and increasing their interactions with sedentary people could stimulate higher levels of overall physical activity in the population.”
Using brain ‘organoids’, researchers at Karolinska Institutet have found that COVID infection results in damage from immune cells and gene expressions similar to those found in neurodegenerative disorders. Their findings were published in Molecular Psychiatry.
The findings could help to identify new treatments against persistent cognitive symptoms after a COVID infection.
Neurological symptoms in ‘long COVID’ have been widely reported but the underlying mechanisms for this remains unknown. To find out, the study’s researchers created brain organoids from human induced pluripotent stem (iPS) cells. The model differs from previous organoid models as the researchers also included the brain immune cells – microglia – in the model. In the infected models, microglia excessively engulfed synaptic structures and displayed upregulation of factors involved in phagocytosis. The developed model and the findings in the study could help to guide future efforts to target cognitive symptoms in the aftermath of COVID and other neuroinvasive viral infections.
Post-infection cognitive deficits
“Interestingly, our results to a large extent mimic what has recently been observed in mouse models infected with other neuroinvasive RNA viruses such as the West Nile virus. These viruses are also linked to residual cognitive deficits after the infection, and a persisting activation of microglia leading to an excessive engulfment of synapses, which has been suggested to drive these symptoms. Multiple studies have now also reported remaining cognitive symptoms after a COVID infection, as well as an increased risk of receiving a diagnosis of a disorder characterised by cognitive symptoms,” says co-first author of the study Samudyata, a postdoctoral fellow at Karolinska Institutet.
Connections to Parkinson’s and Alzheimer’s disease
Microglia also carry out important regulatory functions of the neuronal circuitries in the brain, one of which is engulfing unwanted synapses, a process that is believed to improve and maintain cognitive functions. However, excessive engulfment of synapses has been linked to both neurodevelopmental disorders, such as schizophrenia, as well as to neurodegenerative disorders including Alzheimer’s disease.
By sequencing genes in single cells, the authors could also study how different cell types in the model responded to the virus.
“Microglia displayed a distinct gene signature largely characterized by an upregulation of interferon-responsive genes, and included pathways previously linked to neurodegenerative disorders such as Parkinson’s and Alzheimer’s disease. This signature was also observed at a later time-point when the virus load was minimal,” says co-author of the study Susmita Malwade, a doctoral student at Karolinska Institutet.
The researchers will now study how different pharmacological approaches can reverse the observed changes in the infected models.
A team of researchers analysed centuries-old DNA samples from plague burial pits in London identified genes that protected some against the Black Death that swept through Europe, Asia and Africa nearly 700 years ago. Their study, which showed how those aspects of our immune systems have continued to evolve since that time, is published in the journal Nature.
According to the researchers’ findings, the same genes that once conferred protection against the Black Death are today linked to an increased susceptibility to autoimmune diseases such as Crohn’s and rheumatoid arthritis.
The team focused on a 100-year window before, during and after the Black Death, which reached London in the mid-1300s. It remains the single greatest human mortality event in recorded history, killing upwards of 50% of the people in what were then some of the most densely populated parts of the world.
More than 500 ancient DNA samples were extracted and screened from the remains of individuals who had died before the plague, died from it or survived the Black Death in London, including individuals buried in the East Smithfield plague pits used for mass burials in 1348–9. Additional samples were taken from remains in Denmark.
Scientists searched for signs of genetic adaptation related to the plague, which is caused by the bacterium Yersinia pestis.
They identified four genes that were under selection, all of which are involved in the production of proteins that defend our systems from invading pathogens and found that alleles of the genes either protected or rendered one susceptible to plague.
Individuals with two identical copies of a particular gene, known as ERAP2, survived the pandemic at a much higher rates than those with the opposing set of copies, because the ‘good’ copies allowed for more efficient neutralisation of Y. pestis by immune cells.
“When a pandemic of this nature – killing 30 to 50 per cent of the population – occurs, there is bound to be selection for protective alleles in humans, which is to say people susceptible to the circulating pathogen will succumb. Even a slight advantage means the difference between surviving or passing. Of course, those survivors who are of breeding age will pass on their genes,” explained evolutionary geneticist Hendrik Poinar, an author of the Nature paper.
Europeans living at the time of the Black Death had were extremely vulnerable at first as they had no recent exposure to Yersinia pestis. Mortality rates fell in subsequent waves of the pandemic over the following centuries.
Researchers estimate that people with the ERAP2 protective allele (the good copy of the gene, or trait), were 40 to 50 per cent more likely to survive than those who did not.
“The selective advantage associated with the selected loci are among the strongest ever reported in humans showing how a single pathogen can have such a strong impact to the evolution of the immune system,” says human geneticist Luis Barreiro, an author on the paper, and professor in Genetic Medicine at the University of Chicago.
The resignation of renowned breast cancer specialist surgeon Professor Carol-Ann Benn from the Helen Joseph Hospital has fuelled concerns about the loss of expertise for the public health sector amid existing pressures on cancer services in Gauteng. Concerns have also been raised about what some labelled an unconducive workplace culture and worsening working conditions at the hospital.
Some hospital insiders called the environment toxic with patriarchy and petty hierarchies. This, compounded with ongoing operational challenges, is having a dire impact on staff retention and the quality of patient care.
Benn’s last day at the clinic at the end of September brought to a close a 17-year-long relationship with the public health facility. Volunteers from the not-for-profit Breast Health Foundation which Benn is a founding director of, have backed her decision and have also ended their services at the hospital.
“The Breast Health Foundation’s decision to withdraw services in solidarity with Professor Benn comes after months of trying to address barriers to the provision of quality patient care and a lack of support from senior management,” its statement read.
Louise Turner, chief operations officer at the Foundation, says after an initial phone conversation there have been no further discussions on a way forward to restart their services there. The Foundation had five patient navigators and three volunteers based at Helen Joseph Hospital (HJH). Navigators guide patients through their journey from diagnosis to treatment, help to link them to services, and to advance them along long cancer treatment waiting lists. They also offer psycho-social counselling and become a practical support net. Spotlight previously reported on their work here.
Responding to the concerns raised, the Gauteng Department of Health, however, says no patients will be affected negatively by the exodus of Benn and the Foundation and that the clinic remains fully operational.
Spokesperson for the department, Kgomotso Mophulane, says, “The Breast Clinic is not closed at Helen Joseph Hospital. It is only one employee who has resigned but the clinic continues to have other specialists who run the clinic.”
Mophulane says that the Breast Health Foundation does not have a formal agreement with the department of health and that “existing agreements with other facilities such as Charlotte Maxeke Johannesburg Academic Hospital (CMJAH) continue”.
If the shoe doesn’t fit
Benn has straddled public and private healthcare throughout her 30-year career and she remains head of the Netcare Breast Care Centre and continues to lecture at Wits University’s department of surgery.
“My patients have taught me so much over the years,” says Benn. “Leaving Helen Joseph after 17 years has been a struggle. There was harassment and an obstructive workplace culture that made our daily working lives impossible, but I can’t spend my time getting into trouble for trying to find solutions. And if my patients have to face so much to survive, then I can survive this too.”
Benn says she’s “stepping outside to find solutions”. She says her next focus is to find ways to reform access for cancer treatment on lower-level medical aid schemes without massive co-payments and her work in the public sector continues. Benn says she is managing her existing Helen Joseph patients at her practice at Milpark Hospital and says she’s already had positive advances to set up a “patient-centered unit for equitable care for public patients within the private sector” that will be ready to launch within the next few weeks.
“I don’t fit the shoe of government but I’m leaving to innovate in other ways because no one should be turned away from a specialist unit because they don’t have the money or because they don’t live in a catchment area.”
According to Helen Joseph Hospital CEO Dr Relebohile Ncha, Benn had raised issues of “challenges she had with her supervisor, which is one of the clinical managers. Unfortunately, these issues were brought forward at the time of her resignation and therefore there was no time to redress [sic] the issues raised directly with her.”
Ncha adds that the labour relations department would have dealt with the “workplace relationship challenges”. She also says the psychology department will provide counselling for cancer patients in the absence of the Foundation.
According to Ncha, the system in place remains that new patients are seen on a Tuesday for diagnosis and are “booked within a week” for further treatment. Ncha says there are currently between 400 and 550 outpatients and between 20 and 30 patients booked for surgery per month. She also says there are no oncology specialists at Helen Joseph Hospital, as this care is referred to CMJAH.
A long history
According to Turner, the Breast Health Foundation over the years has helped turn the clinic into a hub of excellence. “So much of what is in the clinic we raised money for – from painting the walls, décor, to the chairs and furniture in the counselling rooms.”
Turner says they’ve helped around 200 000 patients to be “navigated” through the maze of cancer diagnosis and treatment at the facility and around 10 000 people who were diagnosed with cancers were supported through their journey of ups and downs of cancer treatment.
But she says it was clear the workplace environment had become increasingly untenable for Benn and also the Foundation’s team. According to Turner, Benn was being summoned to meetings constantly from the hospital floor to answer for her decisions and was criticised and undermined for veering off administrative procedures.
“Professor Benn’s approach has always been about putting the patient first. She has used her own money to buy things like surgical drains or surgical gloves so that she could do her work. She always made a plan, including squeezing in surgeries and she did accept patients who do not fall into the Helen Joseph catchment area because of their need to access services. But senior management would make her life hell unnecessarily over this,” she says.
‘a family of survivors’
Patient navigator for the Breast Health Foundation Ouma Mamatela was a patient of Benn in 2016 before she joined the Foundation. She says patients at HJH are now paying the price for “egos and mismanagement”.
“It’s going to be very, very hard for patients who expect to find the navigators there to hold their hand through everything. We built up a family of survivors. I am still waking up very early on Tuesdays and Thursdays because those were the days I knew I was getting up to serve our patients at Helen Joseph,” says Mamatela.
Ouma Mamatela, cancer survivor and cancer patient navigator. PHOTO: Rosetta Msimanga/Spotlight
She adds that Benn’s out-of-the-box thinking, accessibility to patients, and transparency in the way she worked irked senior male managers and doctors.
“Professor Benn is one person who speaks to everyone. She doesn’t make herself untouchable. I want to say to those managers that they need to put their egos aside because it is the patients that need quality care the most who are suffering,” she says.
‘you can feel that it’s different now’
Twenty-six-year-old *Thandiwe was one of Benn’s last patients at Helen Joseph. Her mother *Thawe says that she and her daughter have experienced both kindness and professional care from Benn and the Foundation and have also borne the brunt of bureaucratic pettiness and outright bullying from senior clinical management at the hospital.
Thawe asked for their identities to be protected, fearful of being victimised at the hospital.
Thawe tells first how her family’s world came to a crashing halt when Thandiwe found a lump in her breast in July this year. Thandiwe, who was living in the North West province at the time, had a biopsy done at the Moses Kotane District Hospital but says she never received her results.
Being unwell she couldn’t keep her job and eventually came to Johannesburg to be with her mom. Thawe’s employer donated R10 000 towards her daughter’s treatment.
“When I asked in the office and googled about where I could get help, the name that kept coming up was Professor Benn’s so we decided to use the money to do another biopsy and to see Professor Benn at her private practice in Milpark.
“When we saw the Prof she was so kind and informative. She explained everything and gave us some peace even when she confirmed that Thandiwe was cancer-positive. When it came time to pay, she realised that we didn’t have medical aid so she told the receptionist not to charge us anything,” says Thawe.
Benn told them to come to her clinic day at Helen Joseph so the next steps of surgery could begin. Benn also advised plastic surgery at the same time as the removal of the cancerous lump would significantly reduce the size of Thandiwe’s left breast.
On the clinic day, Thawe says they waited for hours but she adds, “Everyone from the Foundation was friendly and explained what was happening. When it’s like that you accept that you have to wait.”
But then Thawe was told her daughter would not be admitted for surgery and that her case was being referred to Charlotte Maxeke Johannesburg Academic Hospital instead.
“Another doctor took Thandiwe off the surgery list and sent a junior doctor to us with the referral letter without any explanation,” she says.
At Charlotte Maxeke, she says Thandiwe was sent from department to department and could not get admitted there either. Eventually, a desperate Thawe returned to Helen Joseph to demand an explanation.
“I was taken to see these three men in the clinical manager’s office. They showed no empathy – they just didn’t care. They just kept saying ‘wrong catchment area’, that they could not do the plastic surgery at Helen Joseph, and that Benn should never have told us to come to Helen Joseph,” she says.
Thawe and Thandiwe stayed in contact with Benn. Mother and daughter kept fighting and eventually took their complaint to hospital CEO Ncha. Only then was Thandiwe’s surgery approved.
She says Benn kept her promise to operate on Thandiwe and also made arrangements with a plastic surgeon from Charlotte Maxeke to help with the reconstructive surgery for Thandiwe.
“I cannot find the words to thank Professor Benn for all she did to save my daughter’s life,” Thawe says.
But she says since Benn and the Foundation’s exodus at the end of September, “it’s been a mess at Helen Joseph”. She accompanied Thandiwe to have a drain removed and her bandages and dressings changed at the beginning of October. “All those ladies in pink that used to help us were gone. All the patients were just sitting without knowing what was happening and no one telling us anything. When we eventually saw a doctor she said she didn’t know how to remove the drains. She took some photos of Thandiwe and told us to come back the next day.
“I had to change Thandiwe’s bandages myself and tell the nurses how to tape the drain. You can feel that it’s different now without Benn and the navigators,” she says. Eventually, they were forced to go to Charlotte Maxeke where the plastic surgeon that operated on Thandiwe helped to remove the drain properly. “It’s been hell at HJH – I worry for what will happen to other women who cannot fight like we did,” she says.
Dozens of Helen Joseph patients have also since weighed in via social media in support of Benn and the Foundation, sharing their stories and also their deepening worries about what comes next for their treatment.
**Patients needing to get in touch with the Breast Health Foundation can continue to do so via their support line on 0860 283 343.
