The General Data Protection Regulation will start in May across the European Union, but doubts are being cast on how prepared researchers and clinicians are. Becky McCall reports.
1138
The General Data Protection Regulation will start in May across the European Union, but doubts are being cast on how prepared researchers and clinicians are. Becky McCall reports.
Not only can Leo Martinez work opponents on the chess board—he began playing aged 8 and reached national level—he’s also a talented scientist who was awarded the 2017 Stephen Lawn TB-HIV Research Leadership Prize for his contributions to reducing the burden of tuberculosis (TB) and HIV/AIDS in Africa. “Leo has done outstanding innovative research on reducing the childhood TB burden—a much needed and underappreciated area”, says Professor Heather Zar, Chair of the Department of Paediatrics and Director of the MRC Unit on Child & Adolescent Health at the University of Cape Town in South Africa.
An AMA Director shares here some of the more amusing correspondence he and his staff receive … with spelling and grammar mistakes left intact.
Politicians are accustomed to receiving hate mail. As a long-time staffer at Parliament House, rarely a day passed by without a phone call, email, or letter from an angry constituent.
Likewise, whenever the AMA President is in the news, someone sends a missive telling us what they think. Certain issues particularly inflame correspondents, such as vaccinations, marriage equality, firearms and asylum seekers. Others have views about health matters ranging from cannabis use to particular medications they have invented or use that will save humanity.
Almost all correspondents receive a personalised response, and when people make false accusations or claims, the Public Health secretariat provides a detailed response. Letters that are abusive, homophobic or racist do not deserve a response.
A commonality of many of the more disagreeable writers is to use CAPITALS and shout at the AMA; while not using spell check is commonplace.
Here are some more entertaining examples from letters to the AMA:
Winnie thoughtfully worried about the appearance of (a former) AMA President: “You look not very well – at least in comparison with your last interview by another abc reporter. a slight puff /swollen face/forehead…as if your whole head has been submerged in water for a while… that kind of puffiness. of course your hair was not coiffeured suited for an interview … you need to be v.good to the abc backstage makeup artists, they could be very unforgiving at times…i suppose you should be able to look after yourself as a very seasoned and senior physician, so please do that.”
Duncan had a problem with the AMA and doctors in general: “I submit that all your health advocacy is phony. The AMA is not independent, as you claim, because it is funded by doctors, the people you represent.”
Kim’s letter related to an ABC special on mental health. “One of the songs about mental illness that came on quite early in the evening. This song was putting [those with mental illness] down by trivialising their suffering and symptoms. I was in the bath! at the time so couldn’t turn the TV off, otherwise it wouldn’t even have lasted for the duration of the song. If there is any influence that you could have in this matter I’d appreciate your assistance.”
One of my favourite letters was from a school principle: “I have a boy in Year 1 whose mother gave him an amber necklace and bracelet to wear. The child’s teacher asked the boy not to wear these as they did not comply with our uniform policy. As a result, the boy’s mother has obtained a medical certificate from a local doctor which states the beads are part of his medication program. Is anyone in your organization able to outline the scientific theory about such beads as I am of the opinion I am dealing with voodoo medicine rather than verifiable fact.”
Sometimes letters are disturbing: “While my wife was pregnant, boxing promoter, [xxx] ,had me KO’d Twice, & this was after his mates had already fractured my skull on the street. I’d gone to them for help, because [xxx], who later -skullfractured 70YrOld [xxx] on the Manly Ferry, was responsible, BUT, he has a Federal Senator for an Auntie? And so the cops commit-ed the worst Corruption to cover for all these criminals…”
Oftentimes we reply with AMA position statements or other publications, although this doesn’t satisfy everyone: “Dear Mr.Simon Tatz, many thanks for your quick response to my query. could you please provide to me data that proves ‘herd immunity” exists.’ You have attached a document of 21 pages … You may have been in a hurry, as you did not answer my query.”
Similarly, George took exception: “Dear Simon, thank you for your response. However, what you have provided is a crock of rubbish. Really? Are you serious? This is how the AMA operates. You throw science out the door.”
Other writers provide too much personal information: “I offer the assistance
of a 50 year cannabis user who has PhD’s and has never had a day of mental
illness in my life. You keep making these broad statements about cannabis
but you have ZERO RESEARCH to back up your comments which are untrue and
very naïve about cannabis.”
David was one of those writers who was more metaphorical than specific: “You describe a beautiful construction that you in the AMA have built. I am sure you are very proud of it. My main point is to try to draw your attention to the possibility that some of the foundations of your construction are unreliable. It contributed to the leverage we needed to engineer a change in our constitution towards democratic processes. When people enter an adversarial political situation with a platform that is built on unreliable foundations, it is not uncommon for a diet of humble pie to follow. I am trying to warn you about this. I doubt that my advice is welcome, or will be heeded.”
Ben wrote to us many times about the “Spiritual Effects of Electromagnetic Radiation”, yet for some reason he wasn’t convinced by the ama reply.
My favourite letters are from AMA members who appreciate the work of Federal Council: “I have been a member of the AMA for over forty years. Never before have I felt so proud to be a member. May I congratulate you and your colleagues on your courage to make this strong and statement.”
SIMON TATZ
DIRECTOR, PUBLIC HEALTH
Many Australians are unaware of the links between alcohol consumption and a range of cancers and other diseases, according to a recently released survey.
But a vast majority of them believe they have a right to such information and that Governments have a responsibility to educate them.
A new poll, released by the Foundation for Alcohol Research and Education (FARE), reveals that Australians have a lack of understanding of the official drinking guidelines that could help keep them healthier.
The same poll also reveals that they want to know about the long-term harm associated with regular alcohol consumption, and they are increasingly of the opinion the alcohol industry is deliberately downplaying independent university research linking alcohol to a range of harm, including cancer and cardiovascular disease.
The Annual Alcohol Poll 2018: Attitudes and Behaviours, conducted by YouGov Galaxy, found that fewer than half of Australians are aware of the link between alcohol misuse and stroke (38 per cent), mouth and throat cancer (26 per cent) and breast cancer (16 per cent).
While 70 per cent of Australian adults are aware of the Australian Guidelines to Reduce Health Risks from Drinking Alcohol, only one in four of them (28 per cent) are aware of the content.
FARE’s Chief Executive Michael Thorn said the lack of knowledge of both the link between alcohol consumption and the risks of cancer and other chronic diseases, together with a clear understanding of how to avoid those risks, was extremely alarming.
“It really is a dangerous cocktail. Community awareness of alcohol’s link with a range of chronic health conditions remains low,” Mr Thorn said.
“In the case of alcohol’s link to breast cancer, the awareness is only 16 per cent. Nor are Australians armed with the knowledge that would reduce their risk of long-term harm. Only one in four Australians have some awareness of the actual content of the official drinking guidelines.”
Now in its ninth year, FARE’s national alcohol poll provides valuable trend data and insights into community perspectives on alcohol
This year, Australians were asked for the first time whether they thought they had a right to know about the long-term harm associated with regular alcohol use.
When advised that the World Health Organisation recognises that alcohol is linked to approximately 200 disease and injury conditions such as breast cancer, liver disease, mouth cancer and stroke, the vast majority of Australians (84 per cent) agreed that they had a right to that information, with 80 per cent of Australians reporting that Governments have a responsibility to educate Australians on this matter.
“If there is a silver lining here, it is that Australians clearly recognise their rights as consumers to be fully informed of the harm associated with the products they consume,” Mr Thorn said.
“The lesson here for Government is that it must do a better job of ensuring Australians fully understand the long-term harm from alcohol, and are given the information that would help them reduce that harm.”
The 2018 Poll findings make clear that the job cannot be left to the alcohol industry – 61 per cent of Australians believe that the alcohol industry would downplay independent university research findings linking alcohol consumption to a range of harm such as cancer and family violence.
Polling revealed that community perceptions of the alcohol industry have not improved since 2015, finding that the majority of Australians continue to believe that the alcohol industry targets people under the age of 18 years (55 per cent), and that it has too much influence with Governments (57 per cent).
The full is available at www.fare.org.au.
CHRIS JOHNSON
A cross-party motion in the Senate has recognised World Tuberculosis Day and noted the enormous contribution of 19th century German physician Dr Robert Koch in combating the disease.
It has also highlighted the prevalence of TB in this region, particularly in Papua New Guinea, and Australia’s leadership in testing for and treating it throughout the Pacific.
Prior to March 24, which was World Tuberculosis Day, Liberal Senator Concetta Fierravanti-Wells, who is also Minister for International Development and the Pacific; Labor Senators Claire Moore (Shadow Minister for Women) and Lisa Singh; and Greens Leader Richard Di Natale combined to draw attention to TB and Dr Koch’s legacy.
Their motion insisted on the Senate noting that:
Their motion went on to detail how HIV weakens the immune system and is lethal in combination with tuberculosis, each contributing to the other’s progress.
“It is now linked to non-communicable diseases like diabetes, and considered a preventable and treatable disease, however many current treatment tools – drugs, diagnostics and vaccines – are outdated and ineffective,” they said.
The Senate also recognised that the funding Australia is providing to support the testing and treatment of tuberculosis in PNG, including the joint program with the World Bank, is already leading to an initiative to achieve universal testing for tuberculosis in the township of Daru.
It also noted he commitment of up to $75 million over five years for Product Development Partnerships in the Indo-Pacific Health Security Initiative to accelerate access to new therapeutics and diagnostics for drug resistant tuberculosis, and malaria and mosquito vector control – an increase in funding to build on the successes of Australia’s previous investments.
Australia has a three-year $220 million pledge to the Global Fund to Fight AIDS, Tuberculosis and Malaria (2017-2019) – a fund that has supported tuberculosis testing and treatment to 17.4 million people since 2002, including over 8.2 million people in the Indo-Pacific region.
Through Australia’s endorsement of the Sustainable Development Goals in September 2015, it made what the Senators described as a bold commitment to end the tuberculosis epidemic by 2030.
“The scheduling of the first United Nations High-Level Meeting on Tuberculosis in September 2018… will set out commitments to accelerate action towards ending tuberculosis as an epidemic and provide Australia with an opportunity to showcase the success of our investment in tuberculosis in our region,” they said.
Their motion also called on the Australian Government to attend the UN High-Level Meeting this year, and commit to increased Australian action and leadership on research and development, prevention, testing and treatment as part of the global effort to eradicate tuberculosis.
CHRIS JOHNSON
Chlamydia, a common sexually transmitted disease, can double a woman’s risk of ovarian cancer.
This is according to new research undertaken by the American Association for Cancer Research (AACR).
Women who had chronic chlamydia infections had twice the risk of ovarian cancer compared to women with no evidence of ever having been infected, researchers found in a report to be fully released at the American Association for Cancer Research in April this year.
“Our data is lending support for there being a role of pelvic inflammatory disease in ovarian cancer and the prime cause of pelvic inflammatory disease, particularly in the U.S, is chlamydia infection,” the National Cancer Institute’s Dr Britton Trabert told a briefing ahead of the meeting.
“We are seeing a doubling in ovarian cancer risk with a prior history of pelvic inflammatory disease.”
The AACR research undertook a retrospective analysis of two different cohorts and control groups, one of them, conducted in Poland, included 279 women with ovarian cancer and 556 matched controls. The other, data from an American National Cancer Institute (NCI) case-control study, included 160 women diagnosed with ovarian cancer during follow-up and 159 matched controls.
The AACR said that there needs to be a greater understanding about what causes ovarian cancer to improve screening and treatment and, ultimately, improve survival.
Chlamydia is treated with a single course of antibiotics but if left unchecked can lead to pelvic inflammatory disease and even infertility in women and testicle infections in men.
Over time, chlamydia causes widespread inflammation that can cause infertility. Now, this new piece of research suggests it may also cause cancer.
While ovarian cancer is not common, every year in Australia approximately 1,600 women are diagnosed with it and more than 1,000 succumb to the disease. If found in its early stages, women have an 80 per cent chance of being alive and well after five years. Unfortunately, 75 per cent of women are diagnosed in advanced stages. There is no early detection test for ovarian cancer.
Chlamydia, however, is very common. The latest data from The Kirby Institute shows Chlamydia was the most frequently notified sexually transmissible infection (STI) in Australia, with a total of 71,751 notifications in 2016. Three-quarters of these notifications were among people aged 15–29 years.
The Kirby Institute’s research also found the annual rate of notification of chlamydia in the Aboriginal and Torres Strait Islander population in the Northern Territory, Queensland, South Australia and Western Australia was 2.8 times that in the non‑Indigenous population in 2016. And in female sex workers, chlamydia incidence increased by 35 per cent between 2012 and 2016.
The Kirby Institute says the data strongly suggests a need for testing to be routinely offered to sexually active adolescents and young adults as the vast majority of infections in young people (15–29 years) remain undiagnosed and untreated.
The AACR research can be found here: http://www.abstractsonline.com/pp8/#!/4562/presentation/4037AACR%202018%…
The Kirby Institute’s HIV, viral hepatitis and sexually transmissible infections in Australia: Annual Surveillance Report 2017 is available here: https://kirby.unsw.edu.au/sites/default/files/kirby/report/SERP_Annual-Surveillance-Report-2017_compressed.pdf
MEREDITH HORNE
The latest release of Australia’s childhood immunisation and HPV immunisation rates show a wide variation of uptake across communities.
While new data from the Australian Institute of Health and Welfare (AIHW) confirms childhood immunisation is increasing, Australians continue to fall short of the 95 per cent national goal.
Nationally, 93.5 per cent of all children aged five were fully immunised in 2016–17. Aboriginal and Torres Strait Islander children aged five had a higher national immunisation rate, of 95.7 per cent.
“The greatest improvement was seen in the Central Queensland, Wide Bay and Sunshine Coast Primary Health Networks (PHN) area, which rose from 91.6 per cent in 2015–16 to 93.3 per cent in 2016–17,” said AIHW spokeswoman Tracy Dixon.
“Despite the majority of Australian children being immunised, it’s important that we don’t become complacent. We need to maintain high immunisation rates to protect the vulnerable groups in our community.”
Vaccines have played a big part in helping halve the number of child deaths since 1990. The World Health Organisation (WHO) estimate vaccines save 2-3 million lives each year.
Importantly, the new AIHW data helps to identify where Australian communities of low immunisation are. Categorised across Australia’s 31 PHN, the data shows variation in immunisation rates that range, from 98 per cent in the Nepean Blue Mountains, NSW to 89.8 per cent in Western Victoria, for example.
Health Minister Greg Hunt said the Government would strategically use the new data to target geographical areas with low immunisation rates and identify the 10 per cent of Australians there who have some doubts or uncertainties about it.
“They’re the areas we’re focusing on and, in particular, now we’re able to micro-target through Facebook, through Google, through GP practices,” he said
The Government currently targets areas of low immunisation through the Get the Facts campaign, which seeks to provide parents, through a range of platforms, with evidence based information on the benefits of immunisation.
“The messaging here is very, very clear, that immunisation is both safe and it saves lives,” Mr Hunt said.
The effectiveness of the Government’s No Jab No Pay policy is to increase vaccination rates has been supported by another report that shows an increase in an uptake in Australia of a vaccine containing measles.
The National Centre for Immunisation Research and Surveillance (NCIRS) report found the proportion of children fully immunised at one and five years of age had reached the highest levels ever recorded in mid-2016 (at 93.9 per cent and 93.5 per cent respectively), just after the introduction of the No Jab No Pay policy.
Dr Frank Beard, public health physician, and head of coverage and surveillance at NCIRS explained: “While Australia has been certified free of local measles, we need to maintain high immunisation rates as we are constantly at threat from measles coming into the country from overseas and spreading locally.”
He added that: “Measles catch-up vaccination in adolescents is particularly important, as recent outbreaks have disproportionately affected this age group due to inadequate vaccination.”
Last year Europe faced a four-fold increase in measles, with 20,000 cases and 35 lives lost.
“Every new person affected by measles in Europe reminds us that unvaccinated children and adults, regardless of where they live, remain at risk of catching the disease and spreading it to others who may not be able to get vaccinated… a tragedy we simply cannot accept,” warned Dr Zsuzsanna Jakab, WHO Regional Director for Europe.
The other part of the AIHW data released related to HPV vaccination rates and showed an increase for both girls and boys in the uptake of the HPV vaccine among Australian teenagers.
Professor Karen Canfell from Cancer Council Australia welcomed the increase: “As well as helping protect girls against cervical cancer in the future, increasing rates of vaccination across both teenage males and females will help reduce our population’s overall risk of a range of cancers linked to the HPV virus.”
Unfortunately, boys are falling behind in the fight to eradicate HPV. Nationally, 80.1 per cent of girls aged 15 were fully immunised against HPV, compared to only 74.1 per cent of boys aged 15.
Mirroring the childhood immunisation rates, the AHWI data also revealed: where you lived effected the likelihood of being vaccinated. HPV immunisation rates ranged from 85.6 per cent of girls fully immunised in Central and Eastern Sydney (NSW) to 69.2 per cent in Tasmania.
“It is concerning that one in five teens still aren’t directly protected through vaccination and there are some communities where uptake remains lower. We need more research to understand these trends,” Professor Canfell said.
She also believes both vaccination and cervical screening are necessary to combat HPV.
“To further work towards a future without cervical cancer, we encourage parents to ensure their teenagers get vaccinated, and we recommend all eligible women participate in cervical screening,” she said.
Australia was the first country to introduce a free HPV vaccine program, starting with girls in 2007, and including boys from 2013. Later this year the new HPV vaccine is being rolled out which protects against additional strains of HPV making it even more effective.
Details about the AIHW report can be found here: https://myhealthycommunities.gov.au/our-reports/immunisation-rates-for-children/march-2018
And here: https://myhealthycommunities.gov.au/our-reports/HPV-rates/march-2018
MEREDITH HORNE
A damning report launched at the 17th World Congress of Tobacco (WCTOH) shows the tobacco industry is increasingly targeting vulnerable populations in Africa, Asia, and the Middle East where people are not protected by strong tobacco control regulations.
The figures in The Tobacco Atlas are nothing short of alarming. In 2016 alone, tobacco use caused over 7.1 million deaths worldwide (5.1 million in men, 2.0 million in women).
Most of these deaths were attributable to cigarette smoking, while 884,000 were related to secondhand smoke. But while tobacco-related disease and death grows in some communities, so do tobacco industry profits.
The combined profits of the world’s biggest tobacco companies exceeded US $62.27 billion in 2015. This is equivalent to US $9,730 for the death of each smoker, an increase of 39 per cent since the last Atlas was published, when the figure stood at US$7,000.
“The Atlas shows that progress is possible in every region of the world. African countries in particular are at a critical point – both because they are targets of the industry but also because many have opportunity to strengthen policies and act before smoking is at epidemic levels.” said Dr Jeffrey Drope, co-editor and author of The Atlas.
In sub-Saharan Africa alone, consumption increased by 52 per cent between 1980 and 2016 (to 250 billion cigarettes from 164 billion cigarettes). This is being driven by population growth and aggressive tobacco marketing in countries like Lesotho, where prevalence is estimated to have increased from 15 per cent in 2004 to 54 per cent in 2015.
José Luis Castro, President and Chief Executive Officer of Vital Strategies, co-author of The Atlas said it: “Shows that wherever tobacco control is implemented, it works… People benefit economically and in improved health. And the industry rightly suffers.”
Gender inequity was also address at the WTCOH, highlighting the negative economic impacts of tobacco use on women – not just in healthcare costs resulting from tobacco-related illness, but also in the diversion of family income, from food and education to tobacco. The emphasis was that tobacco use drives families into poverty.
WHO Regional Director for Africa, Dr Matshidiso Moeti, said: “The tobacco industry views this region as virgin territory to be exploited. They are targeting women and girls specifically and interfering in the adoption of tobacco control policies that will protect health when properly enforced.”
Tactics of fear by tobacco companies were also heard at the conference from several tobacco control advocates who had bravely fought violence or threats because of their advocacy against the expansion of smoking in their countries, including Indonesia and Nigeria.
Dr Lekan Ayo-Yusuf, Chair of the WCTOH Scientific Committee, said the research showed the need to look at the totality of the supply chain of tobacco products, and to follow the whole process from farming, through to taxation, through to point-of-sale restrictions.
WHO launched new guidance at WCTOH on the role tobacco product regulation can play to reduce tobacco demand, save lives and raise revenues for health services to treat tobacco-related disease, in the context of comprehensive tobacco control.
Many countries have developed advanced policies to reduce the demand for tobacco, but Governments can do much more to implement regulations to control tobacco use, especially by exploiting tobacco product regulation.
Dr Douglas Bettcher, WHO’s Director of the Department for the Prevention and Control of Non-communicable diseases (NCDs), said: “Tobacco product regulation is an under-utilised tool which has a critical role to play in reducing tobacco use.”
“The tobacco industry has enjoyed years of little or no regulation, mainly due to the complexity of tobacco product regulation and lack of appropriate guidance in this area. These new tools provide a useful resource to countries to either introduce or improve existing tobacco product regulation provisions and end the tobacco industry ‘reign’.
“Only a handful of countries currently regulate the contents, design features and emissions of tobacco products and tobacco products are one of the few openly available consumer products that are virtually unregulated in terms of contents, design features and emissions,” Dr Bettcher said.
A copy of The Atlas can be seen here: https://tobaccoatlas.org/.
MEREDITH HORNE
The apparent failure of Oxfam to take appropriate actions against ongoing sexual predation by its aid workers is tragic, infuriating, and concerning. It is also ironic, given that Oxfam is considered a bastion of good governance, ethics, and human rights.1 Indeed, Oxfam’s policy and practice arm has no less than 577 publications on promoting good governance and a further 455 on human rights.2 As a health policy and systems researcher who studies the dynamics between international agencies and domestic policy makers in low-income and middle-income countries (LMICs), I believe it is critical to reflect on what the “Oxfam scandal” is not.
The Dutch disciplinary tribunal officially warned two Dutch physicians following their study with a Kenyan collaborator on the efficacy of the homeopathic substance Iquilai (“a potentised mineral supplement”) in 228 patients with HIV/AIDS in Kenya.1–3 The case was brought forward by the Dutch Health Inspectorate that launched an investigation into the practice of the two involved physicians. The tribunal deemed the study incompatible with basic medical ethical principles for research on human beings, as specified in the World Medical Association’s Declaration of Helsinki: the study did not have a proper study protocol, risk assessment, or ethics approval.