Subscribe
×

Preference: Administration and Health Services

2

The whole 9 years

Ian Olver considers his time at Cancer Council Australia and suggests embracing cancer treatment, prevention and research provides a comprehensive cancer control experience

The transition from clinical oncology to public policy as part of my role at Cancer Council Australia was challenging, but it used, as background, the patient-centred focus of clinical practice. Good policy affects millions at a time as compared to influencing one patient at a time in practice. I came to appreciate the importance of federal governments that were prepared to focus not only on short-term policy goals but also support initiatives where the benefits would not be realised until the longer term. In cancer control that often translates to funding prevention measures as well as treatment.

Probably the most satisfying of the Cancer Council’s advocacy goals achieved during my time as chief executive officer was when successive governments supported the introduction of a bowel cancer screening program for Australia. Although progress was slow, there is now a commitment to completing the implementation of the program by 2020. Conservative estimates show that this program alone will save at least 500 Australian lives each year.1

The most effective anticancer measure remains tobacco control. Here we could join with a well established team of campaigners, some lifelong, to continue the battle with the tobacco industry through public education and advocating for legislative support. It is pleasing to see the prevalence of adult smoking is down to 12.8% in 2013 from 24.3% in 1991.2 The most effective strategy for reducing tobacco consumption is price, and the large tax increase in 2010 and the intended four annual 12.5% tax increases (of which there are two to go) should ensure that the goal of reducing the smoking rate to 10% by 2018 is reached. However, the most spectacular anti-tobacco measure taken by the federal government was the introduction of plain packaging in 2010, led by the then minister for health, Nicola Roxon.

This strategy had the long-term goal of decreasing the attractiveness of cigarettes to potential young smokers. However, because Australia was the first country to introduce plain packaging, the legal resources of the tobacco industry were going to be focused on fighting it in this country. The stakes and the risks were high. The outcome was significant in that a government seeking to protect its citizens against a harmful product could not be legally outmanoeuvred by the tobacco industry that was trying to profit from the same citizens despite the adverse health effects of their product. This has international repercussions for tobacco control, despite the further legal challenges remaining.3–5

Whereas federal governments embraced tobacco control, there has been reluctance by both the major parties to address the next major contributor to cancer, and that is obesity, which includes the matters of diet, alcohol consumption and exercise. Concerns about freedom of choice in such matters were argued as precluding government interference, either through policy options such as restricting junk-food advertising to children or taxing high-sugar drinks. Even a front-of-pack labelling system to enable people to be more easily informed about the nutritional value of food, which facilitates that free choice, just stuttered into existence. Often the term “nanny state” is used to justify government non-interference, but surely, in the case of a multimillion dollar junk-food advertising campaign directed at children, a national government would want to be a nanny to protect Australia’s greatest resource?

Luck can also play a role in advocacy for public policy and can occur at the most unexpected times. In the midst of the global financial crisis in 2009, it seemed as though asking for new funding for any cancer-control initiative would be likely to be unsuccessful. However, there was one item on our advocacy agenda that aligned with the then federal government’s desire to stimulate the economy and create employment — and that was the building of regional cancer centres. In the 2009–10 federal Budget, the government announced $560 million would be allocated from the Health and Hospitals Fund for new or expanded regional cancer services.6 This funding helped redress one of the disparities in cancer care — that of remoteness — where the cancer outcomes for people who live remotely are not as good as those for people who live in large cities.

The other great disparity in cancer control is the poorer outcomes for Aboriginal and Torres Strait Islanders. As part of Cancer Council Australia, I worked with some very motivated Aboriginal health experts, particularly when we formed NICaN (the National Indigenous Cancer Network), which brought together the Menzies School of Health Research, the Lowitja Institute, Australian Indigenous HealthInfoNet and Cancer Council Australia as partners. There is still much work to be done in this area, but continuing to seek the evidence on which to base a solution seems to embrace the correct strategy.

It is always satisfying when Australia is the innovator. Ian Frazer, who served as President of the Board of Cancer Council Australia for part of my time as CEO, had a major role in developing the human papillomavirus (HPV) vaccine. Australia already had an enviable record in terms of how effective the Pap test had been in reducing the incidence and mortality from cancer of the cervix, but this record was further strengthened when successive health ministers announced the National HPV Vaccination Program for girls in 2007 and, subsequently, in a world first, extended it to boys. Over the next two decades, deaths from cancer of the cervix will become a rarity.

The opportunity for innovation within Cancer Council Australia came in the area of treatment guidelines. These had been published by the Cancer Council in the major cancers for many years, but the printed documents became rapidly out of date and were costly to circulate. I sought a digital solution, and we developed a wiki platform for guidelines that allowed easy updating and widespread dissemination as well as being able to track the use of the guidelines.7 It made the whole process more cost-effective because we could keep the writing teams engaged and have them evaluate new papers and change their sections of the guidelines as new evidence became available. In terms of cost, the guidelines would be unaffordable if it were not for the generosity of the cancer experts who voluntarily participate in the expert groups to appraise articles and write the evidence-based recommendations — this is an impressive commitment to ensuring best practice across their specialties. Cancer Council Australia is now evaluating the use of educational modules with the guidelines to reinforce their use in practice. As a result of the Cancer Council’s involvement with the Guidelines International Network, the Cancer Council’s staff were able to share literature searches with international colleagues.

We also used the wiki platform at Cancer Council Australia to produce a free online textbook for students8 to support the Ideal Oncology Curriculum. Both the online textbook and the Ideal Oncology Curriculum were written by Cancer Council Australia’s Oncology Education Committee, which has representation from all the Australian universities with medical schools. Likewise, Cancer Council Australia put the National Cancer Prevention Policy on a wiki platform so that the Cancer Council always had the most up-to-date evidence base to underpin our advocacy agenda and our media and other public statements.9 The joy of producing this national document was in being able to draw on the expertise available to all the state and territory Cancer Councils.

Funding cancer research is a priority for all the Cancer Councils. Two concerns that Cancer Council Australia explored in common with the other cancer charities were establishing both the research priorities and the best balance between investigator-initiated research and priority-driven research. It was also important to measure the impact of the research investment to optimise the outcomes and ensure the best use of donated funds.

I have been a cancer researcher during the span of my clinical career and was able to continue with research during my years at the Cancer Council. I moved from participating in new drug clinical trials to more psychosocial research, thereby embracing both quantitative and qualitative methods. A lesson I learnt from being involved in research on a national level was that there are greater opportunities for collaboration when you are not constrained by state boundaries. I was able to collaborate on projects with multiple universities, and these broader collaborations also seemed to increase the success rate of obtaining grant funding.

In my recent move to a research position as director of the Sansom Institute for Health Research at the University of South Australia with the brief to build upon the Institute’s cancer research capability, all the above issues are still relevant. In deciding on the direction for research, we must consider what research will have international importance and in which research Australia can be internationally competitive. We need to collaborate widely at state, national and international levels to be part of research projects that will have the greatest impact.

Australian cancer researchers also need to learn from other disciplines. Venture capitalists are often attracted by projects that, if successful, will shake up a field rather than just hold the promise of incremental change. Cancer research portfolios should reflect some of that disruptive philosophy. There may be new strategies to fund research, in particular, such as the crowdfunding strategies that are making an impact on the music industry and commercial fundraising. Would the public become personally involved and excited about sponsoring a researcher or an innovative cancer research project? There are exciting prospects for how cancer research could develop — perhaps over my next 9 years?

The politician: a public health problem?

A triad of risk factors jeopardises the health of the nation

In the late 1960s I was strongly influenced by Professor Alan Davies, the then Professor of Political Science at the University of Melbourne, among whose many interests were the behavioural characteristics of politicians.

In 1971, I considered going to Yale University to undertake a PhD in psychopolitics, but fate intervened and instead I became involved first-hand in politics in Canberra for 2 years.

In Parliament House in Canberra, I came to recognise a triad of characteristics among its inhabitants: sleeplessness; isolation; and boredom. To this day, these characteristics appear common in the lives of politicians. They contribute to the pathology of government.

In addition, the attitudes of politicians have been linked to low self-esteem and hatred, the impact of which has been underestimated in many conversations about political motives.

Harold Lasswell, the American sociologist remembered for his definition of politics as “the study of who gets what, when, and how”, suggested that aspiring politicians have unusually low self-esteem. It can be a driving factor in those individuals becoming politicians and their search for power.1

Henry Adams, the great grandson of the second United States President, observed that “politics, as a practice, whatever its professions, has always been the systematic organization of hatreds”.2

Do politicians really thrive with little sleep?

When I first observed sleep deprivation, it was a time when politicians and staff worked or played late into the evening. Frequently, politicians prided themselves that they did not need much sleep. Margaret Thatcher claimed that she needed only 4 hours’ sleep a night. Her biographer wrote:

she wanted to show she didn’t need much sleep. In fact, she needed more than she said. It was part of her desire, as the first and only woman, to beat the men.3

In Canberra in the 1970s, it was a very macho thing to show you could exist without sleep — just as it was to smoke, stimulated by images of the Marlboro Man. While community attitudes towards tobacco have changed dramatically, the same is not true of politicians and sleep, despite sleep deprivation being a strong risk factor for having poor judgement and being accident-prone.

One mitigating factor is that politicians now exercise more than they did in the early 1970s. I found that when a political problem was annoying me intensely, exercise was a good antidote. John Howard, from what I know of him, was able to relax because of his early morning walk routine. Yet the current prime minister’s doctor cautioned him about the dangers of cycling, which one can imagine would be riskier when sleep-deprived.4

How lonely is it at the top?

Isolation is another challenge. Canberra is “a great place to sustain the isolation. It is the quintessential garden city — a file-encrusted chrysalis … a place for bureaucrats and lobbyists”.5 The old Parliament House that I knew was always crowded but, in a way, the cheek-by-jowl existence alleviated the isolation. By contrast, the new Parliament House is a monument to isolation — walk the corridors, talk to no-one and see staffers and media fleeing to the latte oases which dot the parliamentary desert.

Media images once portrayed the leader as the “man alone” — his essential strength manifest in his ability to walk alone in the wilderness, confronting and conquering the political demons afflicting the nation. I thought the image had drifted out of fashion until I saw the front page of the Sydney Morning Herald on 10 February this year, which depicted Tony Abbott sitting alone in the House.

In reality, the leader is never alone, even if isolated. When the leader moves, he or she moves in convoy, surrounded by minders. Security demands are increasing — layer by layer, non-uniform upon uniform, guns at the ready — a world of potential peril scrutinised by figures in dark glasses talking into hidden electronics. For a moment the leader plunges into the crowd. In a moment the image is captured. Then the convoy surrounds the leader and loads him or her into a limousine.

The media is a willing accomplice. The published image provides a cartouche. If the cartouche can be captioned by the one-liner, the news bite is perfect.

But does all the incessant social media bird-calling reduce the intrinsic danger of isolation, whether it be geographic or an inner isolation where the messages never penetrate the cloistered mind?

Familiarity breeding contempt

The third problem is that there is so much repetition, so much frenetic meaningless activity, that at the heart of the political process there is boredom.

Listen to politicians fending off the media. How can ministers of the Crown repeat the same mantra over and over again without becoming totally bored? And as they trudge off after the joust with the press, where do they go except into a world in which they are both sleep-deprived and isolated?

How can anybody sit through the antics of a parliamentary session without being bored by the repetitious adversarial chatter verging on abuse?

Once bored, susceptible politicians and their staffers get locked into games and rituals of gossip, then tweeting too much into too little. It is disastrous if only those who thrive on boredom and revel in gossip insinuate their way into power, and then push those who do not play the game to the periphery.

Low self-esteem and systematic organisation of hatreds result — the legacy of the triad of sleep deprivation, isolation and boredom among those entrusted to rule the country.

A public health problem?

Before scoffing, remember that once the Black Death was seen as God’s will, and smoking cigarettes and cigars was considered a societal norm — both beyond the reach of public health.

The arrival of social media has emphasised these dysfunctions in the political system. The craziness of private politics gets translated into a mixture of community disgust and disbelief, so the clamour to change government after one term reaches a crescendo. When private politics is reinforced by the unreality of social media and its narrow focus on self, the purpose of government — let alone good government — is lost. But does anybody learn?

The New South Wales Legislative Assembly has been described as a bear pit. Thus, parliaments that less resemble a mediaeval fairground would be a start. If we do not recognise the symptoms and signs of politics descending into a tournament of egos rather than achieving the business of government, then the health of the nation is at risk, especially if there are politicians listening to voices that do not exist.

Big problems in search of small gains

From The Cochrane Library

We have known for some time that hormone therapy provides no protection against heart disease overall, but the latest Cochrane review update suggests there may be some benefit in the subgroup of recently postmenopausal women (aged between 50 and 59 years). However, only a small number of these women are likely to benefit, and potential harms include an increased risk of deep vein thrombosis. Despite data from more than 40 000 women drawn from 19 studies, hormone therapy remains a complex issue where the same treatment offers benefits in some women but harms in others (doi: 10.1002/14651858.CD002229.pub4).

Helping people with long-term conditions manage their own health is another complex area where small gains are often the best we can hope for. In personalised care planning, the patient and clinician jointly agree on goals and actions for managing the patient’s health problems. A new review of 19 studies, involving more than 10 000 participants, shows personalised care planning has some merit, probably leading to small improvements in some indicators of physical health, such as better blood glucose levels and lower blood pressure (doi: 10.1002/14651858.CD010523.pub2). Unsurprisingly, the process worked best when the support was intensive and when it was integrated into routine care.

With rates of dementia increasing, the search is on to improve how we identify and assess people who have problems with cognitive functioning. Three recent reviews assess the usefulness of various function tests for measuring and predicting cognitive decline in patients at risk of dementia.

The review of the Mini-Mental State Examination included 11 studies and over 1500 people with mild cognitive impairment but failed to find evidence to support its use as a stand-alone single-administration test (doi: 10.1002/14651858.CD010783.pub2).

The Informant Questionnaire on Cognitive Decline in the Elderly (IQCODE) is a diagnostic tool used in hospital settings. The evidence from 13 studies of more than 2700 participants strikes a more positive note, suggesting IQCODE is useful for ruling out possible dementia in the general hospital setting, but is less useful in specialist memory clinics and psychiatry wards (doi: 10.1002/14651858.CD010772.pub2).

In the Mini-Cog screening test, an older person’s ability to recall three words and draw a clock is assessed to help identify those who may benefit from further evaluation to determine whether dementia is present. The three studies included in the review call into question the accuracy of the test and lead the authors to call for further research before the Mini-Cog can be recommended for routine use (doi: 10.1002/14651858.CD010860.pub2).

For more on these and other reviews, check out www.cochranelibrary.com.

Where are general practitioners when disaster strikes?

GPs, inevitably involved in disasters, should be appropriately engaged in preparedness, response and recovery systems

In the past two decades it is estimated that Australians have experienced 1.5 million disaster exposures to natural disasters alone.1 General practitioners are a widely dispersed, inevitably involved medical resource who have the capacity to deal with both emergency need and long-term disaster-related health concerns. Despite the high likelihood of spontaneous involvement, formal systems of disaster response do not systematically include GPs.

An Australian Government review of the national health sector response to pandemic (H1N1) 2009 influenza suggested: “General practice had a larger role than had been considered in planning”.2 It commented that “structures . . . in place to liaise with, support and provide information to GPs were not well developed”; personal protective equipment provision to GPs was “a significant issue”; and planned administration of vaccinations through mass vaccination clinics was instead administered through GP surgeries.2

GPs are well positioned to help

As of the financial year 2013–14, Australia had 32 401 GPs,3 distributed through rural and urban communities. GPs are onsite with local knowledge when disaster affects their communities. External assistance may be delayed, and the local doctor may be integral in initial community response and feel compelled to act, yet have a poorly defined role.

GPs can identify vulnerable community members, and are situated in local medical infrastructure with medical resources. When other agencies withdraw in the months after disaster, GPs remain, providing continuity of care, which is likely to be important at this time of high distress and medical need (Box 1). Primary health care during extreme events can support preparedness, response and recovery, with the potential to improve health outcomes.4 The challenge lies in linking GPs with the existing medical assistance response.

Australian GPs’ experience of responding to disasters

Australian GPs have a strong sense of responsibility and moral obligation to their patients. They have spontaneously demonstrated willingness and capacity to respond in recent disasters, including the 2011 Australian floods, the 2009 pandemic influenza, and recent bushfires. In interviews with 60 Tasmanian GPs, 100% of GPs surveyed intended to contribute to patient care in the event of a pandemic, with expression of a strong sense that to do otherwise was unethical, although this was dependent on provision of appropriate personal protective equipment.5

What is lacking is consistent support for GPs, their families and their practices. Local GPs may be personally affected and immersed in the disaster, or experience repetitive exposure to their patients’ trauma. Changes in patient presentations, workload, income and working conditions create additional stress, particularly if compounded by personal loss or injury.6 GPs involved in ad hoc spontaneous response may experience uncertainty of their role or efficacy, reluctance to stand down, or may prefer no involvement. GPs interviewed after the 2011 Christchurch earthquake noted experiencing “emotional exhaustion” and physical fatigue; some were aware of the need for personal care at the time, and others only in retrospect.6

Principles of disaster management

The principles of disaster management follow the internationally accepted all-hazards, all-agencies approach through the phases of prevention, preparedness, response and recovery (PPRR).7 Despite the variation in GP roles due to practice locations and context, the GP role in disaster management is most evident across the time frames of PPRR. As shown in Box 1, GPs provide continuity of care across these periods, but with the least consistency in the response phase.

Preparedness

Our discussions with key GP groups and leaders in the field suggest that despite a rapid increase in the number of practices engaging in disaster planning over the past year, most GPs are currently underprepared for disasters (Box 2). Lack of preparedness increases vulnerability. To redress this global problem, the World Medical Association recommends disaster medicine training for medical students and postgraduates. This could include education on existing disaster response systems, mass casualty triage skills, psychological first aid and the epidemiology of disaster morbidity in the first instance.

Response

In the response phase, it is important that GPs are aware of the overarching plan following the incident management system that coordinates multiple disciplines (including fire, police, ambulance and health) to respond to all types of emergencies, from natural disasters to terrorism. With this in mind, roles for GPs have previously included accepting patients from a neighbouring affected practice, assisting at other practices or with surges in hospital emergency department presentations and at GP after-hours services, or keeping patients out of hospitals through “hospital in the home” services. It may involve providing prescriptions and medical treatment in an evacuation centre, being included in medical teams such as St John Ambulance or identifying more vulnerable patients for evacuation assistance. Most importantly, GPs should maintain usual practice activities where possible. These response models are aligned with the range of GP skills and have clear operational requirements.

Recovery

GP involvement is imperative in the recovery phase, ensuring continuity of physical and psychosocial health care during the ensuing months to years. While most patients recover with minimal assistance, it is crucial that individuals in need of increased support are recognised, particularly those with pre-existing chronic disease. Some presentations may be related to particular hazards, eg, smoke inhalation after bushfire, but many others are risks regardless of the hazard. These include increased substance use, anxiety, depression, acute or post-traumatic stress disorder, chronic disease deterioration, and the emergence of new conditions, including hypertension, ischaemic heart disease and respiratory conditions.8 Children are particularly vulnerable, and changes in behaviour or school performance may indicate residual problems.

Support from general practice organisations (GPOs)

During the 2009 Victorian bushfires, Divisions of General Practice provided strong support to enable general practices affected by the fires to continue to offer health care, by providing human and material resources, skills training, advocacy and media liaison. During the 2013 New South Wales bushfires, there was strong GP linkage by the Nepean-Blue Mountains Medicare Local to existing systems through the Nepean Blue Mountains Local Health District and the state health emergency operations centre, as well as to GPOs at a state level. Lessons learnt need to be incorporated into systems planning.

The need for unified disaster planning is increasingly recognised at both individual GP and GPO levels. The General Practice Roundtable, with input from all the major GPOs, has diverse GP representation, providing an opportunity for broad input into disaster planning across PPRR. Important recent initiatives by GPOs include position statements for GPs,9 and ongoing development of disaster resources, promotion of general practice disaster planning, and the recent formation of a national Disaster Management Special Interest Group within the Royal Australian College of General Practitioners.

Where to from here?

Disasters are devastating events and by nature are unpredictable. While recognising and acknowledging the critical role of the formal emergency response agencies in the existing system of specialised health response and management, the strength of general practice lies in the provision of comprehensive continuity of care, and this lends itself to greatest involvement in the preparedness and recovery phases. There is a need for a clear definition of roles in the response stage. GPs as local medical providers in disaster-affected communities need to be systematically integrated into the existing stages of PPRR with clear responsibilities, lines of communication, and support from GPOs, avoiding duplication of other responders’ tasks. Valuing and using the expertise and resources that GPs can bring to disasters may improve long-term patient and community health outcomes.

1 Current defined roles for general practitioners in disasters

2 Potential roles for general practitioners and GP-related groups in disasters

Prevention and preparedness — before the disaster

  • national position on the role of GPs in disasters across PPRR;
  • clearly defined roles that integrate with other responding agencies;
  • GPO representation on national, state and local disaster management committees;
  • unified disaster planning across GPOs through the GPRT;
  • information for other agencies on GPs’ skills and roles through the GPRT and GPOs;
  • education and training in core aspects of disaster medicine for GPs and medical students;
  • involvement of local GPs in local disaster planning and exercises through ML or PHN;
  • general practice business continuity and disaster response practice planning;
  • assisting patient preparedness to reduce vulnerability;
  • GP personal and family preparedness; and
  • vaccination, infection control measures and surveillance in infectious events.

Response — during the disaster

  • representation in EOCs for communication and coordination with other responders (including ambulance, mental health, public health, etc);
  • unified disaster response from GPOs, including information, resources and phone support;
  • coordination through GP networks for workforce support for affected practices;
  • clearly defined integrated roles in existing systems for GPs involved in response, such as:
    • maintaining usual practice activities where possible to help surge capacity
    • expanding practice capacity to treat extra patients if needed
    • expanded use of practice infrastructure, medical resources and trained staff as appropriate
    • supporting existing medical teams such as St John Ambulance
    • assisting at the scene, evacuation centre or local clinic as appropriate;
  • assistance in identification of potentially vulnerable and at-risk individuals and families;
  • ongoing communication with and referral between other local primary care health providers;
  • patient education on hazard-related health matters, eg, asbestos, infectious outbreaks, etc;
  • preventive vaccination — tetanus (clean-up injuries); and
  • surveillance for future outbreaks and emerging community disease threats.

Recovery — after the disaster

  • inclusion in the review process to improve future PPRR;2
  • representation on recovery committees to improve interagency referral and communication;
  • ongoing support from GPOs for affected GPs and staff through regular contact and resources;
  • GPOs and ML or PHN support for those practices that are more affected;
  • management of deterioration of pre-existing physical and mental health conditions;
  • surveillance for new physical and psychological conditions to improve patient outcomes;
  • surveillance for emerging community disease threats; and
  • linkage and communication with community groups and allied health on recovery activities.

EOC = emergency operations centre. GPO = general practice organisations. GPRT = General Practice Roundtable. ML = Medicare Locals. PHN = Primary Health Networks. PPRR = prevention, preparedness, response and recovery.

Getting the levers right: a way forward for rural medicine

To the Editor: We agree with the points raised by Kamerman in his erudite article.1 There are, however, two things that should be mentioned.

The first is that Townsville and Gundagai do not have the same Australian Standard Geographical Classification — Remoteness Area (ASGC-RA) classification: Townsville is categorised as RA3 (outer regional Australia), whereas Gundagai receives the less remote classification of RA2 (inner regional Australia). This magnifies the absurdity of the current classification situation even further.

The second is that not only would the general practitioner copayment policy have led to practices deciding against taking on registrars, but it would also have had an even greater potential for practices to decide against accepting medical students. Although the proposed Medicare rebate freeze will not have the immediate impact on undergraduate and vocational training that the copayment would have had, the net effect will ultimately be very similar.

Placement in rural general practices forms a key part of our medical student training and is a major factor in the success that we have had to date in our graduates choosing both generalist and rural career pathways. An unintended consequence of the copayment policy could have been to derail these positive outcomes with a stroke of the pen. We predict that, as the impacts of the Medicare rebate freeze take effect, enough practices will eventually decide to withdraw from training to have a significant negative impact on training programs and, ultimately, the primary health care workforce.

Doctors get carrot, anti-vax parents the stick, in immunisation boost

Doctors will be paid a $6 incentive to chase up the parents of children who have fallen behind on their vaccinations as part of Federal Government measures aimed at boosting immunisation rates.

Health Minister Sussan Ley said an extra $26 million will be allocated in the Federal Budget to the national immunisation program to encourage doctors to identify children more than two months behind on their vaccinations, as well as to develop an Australian School Vaccination Register and upgrade efforts to educate parents.

It has been revealed last year 166,000 children were more than two months behind on their vaccinations, in addition to 39,000 whose parents had expressed a conscientious objection to immunisation, and Ms Ley said the $6 incentive, which would be in addition to the $6 paid to doctors to deliver vaccinations, was part of a “carrot and stick” approach to deepening the country’s immunity to serious diseases.

“I believe most parents have genuine concerns about those who deliberately choose not to vaccinate their children and put the wider community at risk,” the Minister said. “However, it’s important parents also understand complacency presents as a much of a threat to immunisation rates and the safety of our children as conscientious objections do. Immunisations don’t just protect your child, but others as well.”

The announcement came as the Government intensified its crackdown on anti-vaccination parents claiming childcare subsidies and other benefits.

Social Services Minister Scott Morrison has declared parents can no longer claim an exemption from welfare payment vaccination requirements on religious grounds, adding to the scrapping of exemptions for parents who make a conscientious objection.

It means that the only authorised exemption for the vaccination requirements of the Child Care and Family Tax Benefit Part A schemes, which provide childcare subsidies worth up to $205 a week, a $7500 annual childcare rebate and a tax supplement worth up to $726 a year, is on medical grounds.

Mr Morrison said only one religious group, the Church of Christ, Scientist, had a vaccination exemption, and it was not exercising it.

“The Government has…formed the view that this exemption, in place since 1998, is no longer current or necessary, and will therefore be removed,” the Minister said, adding that it will not be accepting or authorising any further applications for exemption from religious groups.

“The only authorised exemption from being required to have children immunised in order to receive benefits, is on medical grounds,” Mr Morrison said. “This will remain the sole ground for exemption.”

The Government’s tough stand has been backed by the AMA, though President Associate Professor Brian Owler said children should not be “punished” for the decisions of their parents and urged greater efforts to educate parents on the benefits of vaccination.

A/Professor Owler said a recent sharp increase in the number of parents lodging conscientious objections to immunisation meant it was “not unreasonable” for the Government to look at new ways to lift the nation’s vaccination rate.

“The number of conscientious objectors has been rising, so that’s why I think it’s not unreasonable for the Government to come up with another measure,” A/Professor Owler said. “I think it should be seen in that light, that it is really another mechanism, another lever to pull, to try and get the vaccination rates up. It’s not going to solve all of the problems, but I think it’s probably a step in the right direction.”

“The overwhelming advice and position of those in the health profession is it’s the smart thing and it’s the right thing to do to immunise your children,” Mr Morrison said.

“While parents have the right to decide not to vaccinate their children, if they are doing so as a vaccination objector, they are no longer eligible for assistance from the Australian Government.”

Child vaccination rates, particularly among pre-schoolers, are above 90 per cent in most of the country, but figures show significant pockets of much lower coverage, including affluent inner-Sydney suburbs such as Manly and Annandale, where the vaccination rate is as low as 80 per cent, as well as northern New South Wales coastal areas.

High rates of immunisation, above 90 per cent, are considered important in providing community protection against potentially deadly communicable diseases such as measles, diphtheria and whooping cough (pertussis).

Objectors regularly claim vaccination is linked to autism. But this has been scientifically disproved, most recently in a Journal of the American Medical Association study which found that the measles-mumps-rubella vaccine did not affect autism rates among children with autistic older siblings.

A/Professor Owler said there were occasional instances of adverse reactions to vaccination in some individuals, “but they are by far a minority compared to the overall benefits of vaccination. Vaccination is probably the most effective public health measure that we have.”

While he said the Government’s latest measure might help increase the immunisation rate, it was important to continue with efforts to educate parents about the importance of vaccination and encourage them to ensure their children were covered.

“The anti-vaccination lobby has been very successful in putting lots of rubbish out there on the internet in particular. Often it’s notions that have been completely discredited,” he said. “One of the things we’ve got to keep going with [is] education – encouraging parents, giving them the right messages, and getting them to go to the credible source of information, which should be their family doctor or GP.”

A/Professor Owler said often children were not vaccinated simply because it was overlooked by busy parents, and it was important to ensure people were given timely reminders.

The Government’s changes have bipartisan support and are due to come into effect from 1 January next year.

Adrian Rollins

Firearms, mental illness, dementia and the clinican

In reply: There was a transcription error in our article.1 The rate of licensed firearm ownership in Australia in 2001 was indeed 3.9 per 100 people,2 although this is likely to be an underestimate, as unregistered, unlicensed and illegal firearms are not captured by official statistics.

Although the overall rate of homicide by firearm owners is low, we argue that the stakes are high. Other potential adverse outcomes of a person who lacks the capacity to safely handle firearms continuing to have a firearm include accidental injury and suicide.

We acknowledged the ethical implications of doctors having a role in assessing suitability for firearm licences.1 However, there is already an expectation that doctors should notify police when concerns about risk to the community or individuals arise from a patient’s access to firearms.3 Risk assessment alone is inadequate, but doctors better meet their obligations when risk assessment is combined with capacity assessment.

Older adults are more likely to have complex cognitive and physical comorbid conditions that affect their ability to safely use a firearm. Screening is important, and doctors will use their clinical judgement to identify patients who may need a closer examination of their capacity in relation to firearm access.

First use of creatine hydrochloride in premanifest Huntington disease

Huntington disease is a devastating autosomal dominant neurodegenerative disorder that typically manifests between ages 30 and 50 years. Promising high-dose creatine monophosphate trials have been limited by patient tolerance. This is the first report of use of creatine hydrochloride in two premanifest Huntington disease patients, with excellent tolerability over more than 2 years of use.

Clinical record

A 33-year-old patient in our general practice carried the autosomal dominant gene for Huntington disease (HD). The abnormal number of cytosine-adenine-guanine triplet repeats in the huntingtin gene she carried meant she would eventually become symptomatic for this dreadful disease.

The patient requested information regarding potential treatments, as she had become aware of clinical trials for HD and of compounds used by patients with HD. A neurologist had previously recommended a healthy diet, exercise, avoiding excessive toxins (such as alcohol), social enrichment and cognitive stimulation, which together may modestly slow clinical disease progression and improve quality of life.1 She had used preimplantation genetic diagnosis during her pregnancies but preferred otherwise not to focus on her condition. She understood that there were no proven therapies for this incurable condition and did not want to attend HD clinics. She was asymptomatic.

At her request, I searched the PubMed database for possible treatment options. There were some that were unproven in HD but had been used safely in humans for other indications, had a reasonable rationale regarding known HD pathophysiology, and had positive results in animal models of HD and/or early-phase human HD trials.2

In January 2012, I sought advice on using these options (eg, high-dose creatine, melatonin, coenzyme Q10, trehalose, ultra-low-dose lithium with valproate) from a specialist HD clinic but was advised against this approach. Instead, it was suggested that the patient might be able to sign up for clinical trials including high-dose creatine. The patient chose subsequently to participate in an observational trial (PREDICT-HD) which did not limit her options. However, she declined consideration for the Creatine Safety, Tolerability, and Efficacy in Huntington’s Disease (CREST-E) study,3 an international Phase III placebo-controlled trial of creatine monophosphate (CM) in early symptomatic HD. It is also very unlikely she would have been accepted for this trial as she was asymptomatic.

In February 2014, the Creatine Safety and Tolerability in Premanifest HD trial (PRECREST),4 a Phase II trial, showed significant slowing of brain atrophy in CM-treated premanifest HD patients. If convincingly replicated, this would be a major advance.

The main practical problem with high-dose CM (20–30 g daily) is tolerability. Adverse effects are common, especially nausea, diarrhoea and bloating. In people who have normal renal function before commencing creatine supplementation, creatine does not appear to adversely affect renal function.5

In PRECREST, about two-thirds of patients tolerated the maximum dose (30 g daily) and 13% of those on placebo were unable to tolerate CM when they switched to it. Moderate intolerance appears to be common. A high dropout rate affected the HD gene carriers in this study despite assumed high motivation.6 Recommended additional water intake for patients on CM therapy is 70–100 mL per gram of creatine per day, which is problematic at high doses of CM.

The patient again requested assistance as she wanted to seek the best available potential treatment to face her condition with equanimity.7 I decided that, provided safety was paramount, I would assist her on an informed consent basis as part of my duty of care, respecting her informed autonomy.

A case presentation and treatment plan was prepared and an expert team of relevant medical specialists was assembled. Comprehensive informed written consent, including consent from the patient’s partner for additional medicolegal protection, was obtained. The New South Wales off-label prescribing protocol8 was followed, actions were consistent with article 37 of the Declaration of Helsinki,9 and medical defence coverage for the proposed treatment was specifically confirmed by my indemnity insurer.

After baseline assessment, including renal function and careful attention to hydration, the patient commenced oral CM therapy at 2 g/day. This was slowly increased to 12 g/day but she was unable to maintain this dosage due to gastrointestinal adverse effects.

Creatine hydrochloride (CHCl), a creatine salt that has greater oral absorption and bioavailability than CM, and requires less water and a lower dose, offered a possible solution.10 The reduced dose also reduces intake of contaminants, which is very important for extended use. Use of CHCl has been confined to the bodybuilding industry and, to the best of my knowledge after a careful search of PubMed, nothing has previously been published in the context of neurodegenerative disorders.

After review by a pharmacologist and consultation with the co-inventor of the available formulation of CHCl,10 a daily dose of 12 g (equivalent to about 19 g CM) with 100 mL water per 4 g of CHCl was proposed. The manufacturer (AtroCon Vireo Systems) provided 1 g capsules of pharmaceutical grade CHCl at reduced cost. The patient decided to commence CHCl therapy after ceasing CM therapy. The dose of CHCl was slowly increased to 4 g three times a day (12 g daily) with a minimum of 100 mL additional fluid per 4 g dose.

The patient has been taking this dosage since January 2013 without any significant adverse effects and is keen to continue. Her serum creatinine levels are stable. Her serum creatine levels before and after doses have also been measured, and this confirmed that the CHCl is being absorbed.

Shortly after this patient began CHCl therapy, a second related premanifest HD patient requested access to CHCl. After a similar informed consent process, the second patient commenced the same dose of CHCl and has also not developed significant adverse effects. Clinically, both patients remain well.

Discussion

This is the first report of CHCl use in HD, with excellent tolerability for more than 2 years by two patients. If replication of the PRECREST findings confirms high-dose creatine as the first potentially disease-modifying treatment for HD, CHCl may represent an important option for patients, warranting further studies.

In this context, it is disappointing that CREST-E was closed in late 2014 after interim analysis showed it was unlikely to show that creatine was effective in slowing loss of function in early symptomatic HD based on clinical rating assessment to date. There were no safety concerns.11

It will be interesting to see, when eventually analysed and published, whether the magnetic resonance imaging (MRI) data from CREST-E showed any benefit in any subgroup and whether the trial cohort as a whole were in fact all in early-stage disease, and to consider whether the clinical rating scales were sensitive enough in this specific trial context.

Although others disagree, I argue that it remains unclear based on PRECREST findings whether the lack of benefit of creatine for early symptomatic disease in CREST-E is strictly relevant to the much earlier presymptomatic stage of the disease, especially when patients are far from onset.

HD symptoms take 30–50 years to develop, and the disease generally progresses to early dementia and death. Progressive MRI abnormalities accumulate for 20 or more years before onset. It appears that by the time the disease becomes symptomatic after 30–50 years, a multiplicity of interacting pathogenic mechanisms have become active (eg, excitotoxicity, mitochondrial energy deficit, transcriptional dysregulation, loss of melatonin receptor type 1, protein misfolding, microglial activation, early loss of cannabinoid receptors, loss of medium spiny striatal neurones, oxidative stress), and early and late events have occurred. The authors of a study of postmortem HD brain tissue refer to these mechanisms as a “pathogenetic cascade”,12 while others refer to them as multiple interacting molecular-level disease processes.13 “Early” downregulation of type 1 cannabinoid receptors has been identified as a key pathogenic factor in HD.14 In a recent review on the pathophysiology of HD, the authors described “a complex series of alterations that are region-specific and time-dependent” and noted that “many changes are bidirectional depending on the degree of disease progression, i.e., early versus late”.15 These and other findings suggest that HD has a complex temporal and mechanistic evolution that has not been fully elucidated. For this reason, we should think carefully before abandoning an agent when it fails at the relatively late symptomatic stage of this devastating and incurable disease.

As creatine is thought to have a useful potential for action in relation to only one of the many relevant disease mechanisms — mitochondrial energy deficit — was it too much to expect creatine to have a significant impact on symptomatic-stage disease in CREST-E? It seems possible, based on the references cited above, that there are fewer (or less intense) pathogenic mechanisms operating at much earlier presymptomatic stages of the disease, when the brain is more intact and plastic. If so, treatment trials in presymptomatic patients assessed using MRI or other biomarkers might offer better prospects for benefit.

I believe that sophisticated replication of PRECREST (or at least clarification as to whether the slowed rate of atrophy on MRI in premanifest patients was genuine or artefactual) is an ethical obligation that we owe to the HD community who contributed so much to CREST-E.

There are significant ethical and sociomedical issues associated with HD research. In reviewing the literature, it was obvious that early-phase research contains multiple examples of existing, out-of-patent or non-patentable potential therapies that appear to warrant modern clinical trials and, I argue, at an appropriate early stage of the disease.2,16,17 Early-phase studies of combination therapies with existing agents appear frequently to receive little, if any, follow-up.2,18

Currently, any drug for which US Food and Drug Administration or European Medicines Agency approval is sought for presymptomatic HD must achieve a clinical end point first in symptomatic HD, then requalify in presymptomatic HD, meeting combined clinical and biomarker end points. Does this arbitrarily overprivilege the clinically observable stage of a disease, which is now understood (based on relatively recent MRI studies) to have a course of 20 or more years before symptoms begin?

Because of the enormous costs associated with drug development, and the uncertainty of such research, I believe that it is time for a renewed focus on small, targeted clinical trials, especially in premanifest HD, using existing and novel agents. Recent advances in MRI and additional biomarkers that are under development19 open the possibility of meaningful small trials that aim to slow HD progression until gene therapy arrives.

None of this, however, will achieve its full potential unless we address the barriers to genetic testing. The true incidence of many genetic conditions, including HD, in Australia is unknown. If a treatment becomes available, more people will want to be tested. The decision to have genetic testing is complex, controversial and uniquely personal. Respecting this, I believe that we need to urgently follow the lead of the United States, Germany, Sweden, France, Denmark and other countries in legislating to end genetic discrimination in health, insurance, employment and services.20 I urge policymakers to replicate and clarify PRECREST and, in full collaboration with the HD community, trial existing and available medications alongside novel agents.

The old African queen lending a hand to improve health in Malawi

A doctor who founded a nation’s medical system, and the many lives of his ship

Not long after the explorer, medical missionary and anti-slavery campaigner, Dr David Livingstone, explored Lake Nyasa, now Lake Malawi, a wave of evangelising zeal saw the establishment of religious communities along the lake shore. One of those who went forth was an Anglican priest, Chauncy Maples. After 19 years, he was recalled to England to be appointed the Bishop of Nyasaland. It was on his return journey that the small vessel carrying him across the lake sank, and he drowned, weighed down by his bishop’s cassock.

Subsequently, as the plans for a large steamer were being drawn up to service the mission communities, the name Chauncy Maples was chosen for this vessel.

The building and rebuilding of the Chauncy Maples

The original plans for a 108-foot-long vessel were drawn in Africa, then repeatedly modified in Scotland by Henry Brunel, until the final version, a 127-foot-long design, was settled on.1

The ship was initially built in the inland shipyard of Alley and McLellan in 1899. This was a Glasgow company that supplied vessels in kit form to be exported to the colonies. During construction, the plates were bolted together rather than riveted, and once complete the entire ship was dismantled, the parts were galvanised, sorted into 3481 lots and then dispatched to the delta of the Zambezi River (Box 1).1

A workshop and slipway were created near where the Shire River leaves Lake Malawi, and there the ship was rebuilt and launched in 1901. The Chauncy Maples then began its first life as a missionary ship servicing the spiritual, educational and medical needs of mission communities along the shore of this 580-kilometre long lake. The routine was to drop off supplies at the missions and to then allow the treatment of patients over several days while the ship waited at anchor.

The pre-colonial health needs of Malawi and the development of a health service

One of the regular passengers on the Chauncy Maples was Dr Robert Howard, the first full-time doctor in Malawi. He recorded the illnesses afflicting the local populations and the missionaries, while establishing a string of lakeside medical clinics. His efforts directed toward disease prevention through good public health and hygiene probably prevented the collapse of the missionary settlements. Before his arrival, the annual death rate among the mission workers had been 10%, with a further 20% a year having to return to England due to illness.2

The local health needs were massive, with local infections as well as introduced ones that rapidly spread along trading and slaving routes. Dysentery, malaria, schistosomiasis and hookworm infestation accounted for much of the local disease burden. Diseases introduced from Europe and Asia included influenza, measles, smallpox and, later, tuberculosis. The sand flea, the cause of jiggers, a pruritic or painful skin infestation, rapidly followed trade routes to involve most of sub-Saharan Africa. Debilitating tropical ulcers were common, as were wounds from encounters with wild animals.2–5 Dr Howard was working in Malawi at the time when the transmission of malaria was first understood, and he introduced measures to control transmission.6,7

Dr Howard introduced measures to prevent malaria that we are all familiar with today. He pioneered a system of mosquito nets of a particular design (the Nyasa pattern), which the nursing staff were responsible for maintaining and replacing. Two pairs of socks were to be worn at night to protect the ankles from bites, and all old tins were to be buried before the wet season. He also introduced the practice of sprinkling pyrethrum powder on hot coals to fumigate mosquitoes in houses.3

Dr Howard and the Chauncy Maples both played pivotal roles in developing the health services of Malawi. Without their steamers, of which the Chauncy Maples was the largest and most important, the Universities’ Mission to Central Africa would never have been able to supply their hospitals. The ship also acted as a mobile hospital and means of patient transport. Ill patients were moved from their villages to hospitals such as the one on Likoma Island and could have their treatment initiated while travelling across the lake, somewhat akin to a modern air ambulance.2

The Chauncy Maples also made possible Dr Howard’s visits to villages to establish public health measures, including his antimalarial initiatives and the boiling of all drinking water, and to support the local “dressers” (the paramedics of their day), who, with a scattering of nurses, provided the hospital services along the shores of the lake.

After a decade of remarkable service, Dr Howard was made to leave his post because he married one of the nurses he worked with. Then, as now, bureaucracy was often unable to see past rigid rules to ensure the efficient delivery of service. It took 18 months to replace him. Dr Howard and his wife subsequently worked in the fledgling health system in Tanganyika.

The Chauncy Maples finds new roles

During World War I, the Chauncy Maples briefly saw service as a British armed patrol vessel before returning to her previous duties as a mission ship.

After 52 years of servicing the lakeside missions, the ship was withdrawn from service. A few years later she was purchased by a fishing company, fitted with refrigeration, and used as the mother ship of a fishing fleet on Lake Malawi.2 Then in 1965, she became a commercial passenger vessel that also functioned as a freighter. The old steam engine was removed and a diesel engine fitted. Her superstructure was modernised to accommodate more passengers, making her somewhat top-heavy.8 Finally, in 1990, after 89 years of service, the ship was laid up at Monkey Bay, on the shore of the lake, as something of an historic curiosity.

The Chauncy Maples returns to medical work

After such a long career, graceful retirement or the breaking yard would have seemed the obvious fates available to the ship. However, when resurveyed in 2009, the Chauncy Maples was felt to have at least 30 years of hull life left and, in 2012, she was hauled ashore to be refitted as a floating clinic ship (Box 2). Her modified superstructure has been removed, with the purpose of restoring the original elegant design. A new engine has arrived and a new propeller has been cast.

The refitting has been funded by the Chauncy Maples Malawi Trust, a charity registered in the United Kingdom.9 The engineering work is being carried out by the Portuguese company Mota-Engil, which has offered to fund the running costs for the completed vessel for its first 10 years back in the water. Other partners in the project are insurance and investment firm Thomas Miller and the Malawi government.

Various significant obstacles have had to be overcome, including having to procure a mobile crane in South Africa and drive it to the site. Currently, work is suspended while disagreements about ownership are resolved.

Hopefully, in the next couple of years, this 115-year-old ship will again be serving some of the medical needs of Malawi, a country with one of the shortest life expectancies and one of the highest rates of HIV infection. One in 200 pregnancies end in the death of the mother, one in 14 children do not reach the age of 5 years. Malawi has one of the highest ratios of population to doctors.10 As the road network is poorly developed, using the lake to transport clinical manpower and equipment will hopefully prove to be an efficient solution to some of this country’s medical needs.

1 The Chauncy Maples nearing completion in Alley and McLellan’s inland shipyard in Scotland in 1899, before its dismantling and transport to Africa1

2 Recent photo of the Chauncy Maples at Monkey Bay, Lake Malawi, being prepared to return to the lake as a clinic ship

Photo courtesy: Dean Smith