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Preference: Infectious Diseases and Parasitology

434

Impact of pneumococcal polysaccharide vaccine in people aged 65 years or older

In reply: We agree with Collignon that pneumococcal conjugate vaccines (PCVs) are superior to polysaccharide pneumococcal vaccines (PPVs), and that the herd immunity impact of the PCV on older people is impressive. However, we do not agree that our study shows that the PPV is ineffective in older people, or that its use has resulted in an increase in disease.

The increases in disease due to serotypes not contained in the 7-valent PCV in the ≥ 65-year age group suggest an underlying increase in adults, probably because of serotype replacement driven by the PCV. The fact that these increases were greater in 50–64-year-olds, in whom PPV use was negligible, suggests an attenuating effect from the PPV. The estimate of effectiveness of the PPV in our study was 61%.

Decisions on the PPV’s continued use in older people will depend on several factors. These include disease rates in older adults due to serotypes covered by the PPV but not the 13-valent PCV, and any likely additional impact of PCV use in adults over and above the herd immunity impacts from PCV use in children.

Realising the potential of the post-2015 development agenda for Indigenous health

To the Editor: The United Nations Millennium Development Goals (MDGs) of 2000 included three health-related goals: reduce child mortality (goal 4), improve maternal health (goal 5) and combat HIV/AIDS, malaria and other diseases (goal 6). Like many other high-income nations, Australia did not consider its national health priorities subject to the MDG framework. In 2005, the then Aboriginal and Torres Strait Islander Social Justice Commissioner Tom Calma observed that the Australian Government had committed to eradicate poverty through the MDGs “in third world countries by 2015, but has no similar plans to do so in relation to the extreme marginalisation experienced by Aboriginal and Torres Strait Islander Australians”.1 In response to the Close the Gap campaign launched in 2007, the government has addressed the health inequalities experienced by Indigenous Australians (with mixed progress reported), and introduced the National Aboriginal and Torres Strait Islander Health Plan 2013–2023.2

Global debate around the new post-2015 development goals, which will replace the MDGs when they expire in December 2015, is presently underway, with the intergovernmental Open Working Group on Sustainable Development Goals providing its initial report on the potential goal framework in July 2014 (http://sustainabledevelopment.un.org/focussdgs.html). Although the new goals are not yet finalised, under proposed goal 3 (to ensure healthy lives and promote wellbeing for all at all ages), 13 subgoals are currently being negotiated. The expectation is that the new goals will be universal and applicable to all countries — including high-income nations like Australia — with differentiated targets to redress inequities both between and within countries. Although it is unlikely that there will be any international legal obligation to comply, Australia, as a “good global citizen”, may face significant normative pressures to implement domestic policy changes to reflect post-2015 targets. This raises the question of the likely implications for Australian domestic health policy — and for Indigenous health in particular — in light of the new health and development goals. Through post-2015 commitment to overcome domestic and global health and related inequities, the Australian Government will be more accountable on the world stage not only for its Indigenous peoples but also for all people.

AIDS, loss and renewal

Clarification: In “AIDS, loss and renewal” in the 4 August 2014 issue of the Journal (Med J Aust 2014; 201: 130-132), under the heading “No strangers to suffering”, the reference to the murder of Dwayne Jones requires clarification. This section should begin:

So we think of them and of others who have suffered, or are suffering, through irrational, unjust and destructive acts:

  • Of Dwayne Jones, murdered in Montego Bay, Jamaica, in July 2013 when she identified as a woman. She was beaten, stabbed, shot and then run over by a car and dumped in a ditch. No one brought to justice.

The end of HIV: how do we get there?

Treatment is now the focus of prevention

The world’s HIV research policy and advocacy community will converge in Melbourne in July for the 20th International AIDS Conference. This is the first time this particular event has been held in this country, and provides an opportunity to focus on our response to the epidemic in our region, where we are now, and how to reduce transmission to zero. Over the years, the prevailing metaphor has evolved from the Grim Reaper’s “prevention is the only cure we’ve got” to its polar opposite, “treatment as prevention”.1,2 Recent high-profile reports of “cures” provide hope that ending HIV is a possibility.3–5 But what is needed to ensure this goal is accessible to all?

While Australia’s clinical and public health response to HIV has ensured that we remain a low-prevalence country with a relatively concentrated epidemic, there is currently a rising rate of new infections — the highest in more than 20 years.6 To meet this challenge, state and national HIV strategies have outlined targets that aim to halve sexual transmission by 2015, with the goal of virtual elimination of transmission by 2020.7,8 To achieve this, testing rates need to double and antiretroviral coverage needs to be around 95%.7 Lowering the barriers to HIV testing, as well as the Pharmaceutical Benefits Advisory Committee’s recent removal of the need for a CD4 criterion to prescribe subsidised antiretroviral treatment, are key steps towards a “test and treat” approach.

The dialogue with patients is changing; they are being encouraged to take responsibility not only for their own health but for that of others, by choosing to commence antiretroviral therapy at an earlier stage. The evidence for this “treatment as prevention” public health approach was first demonstrated by the HTPN 052 study, in which transmission was reduced by 96% in serodiscordant couples receiving early treatment, regardless of CD4 count.2 This approach is not the only answer, and the safe sex message that also applies to many other sexually transmissible infections should not be lost.

With the life expectancy of a person living with HIV approaching that of the general population, the focus now is on chronic disease management. Modelling predicts that the population living with HIV is not only ageing, but will increase in size due to increased life expectancy as well as the burden of new infections. While AIDS-defining illnesses are declining, significant contributors to morbidity and mortality are serious non-AIDS illnesses (SNAs), including malignancy and cardiovascular, cerebrovascular, liver and renal disease. It still remains to be seen whether the timing of antiretrovirals affects the individual risk of developing these complications — the Strategic Timing of Antiretroviral Treatment (START) study, due for completion in December 2015, aims to answer this question.

The rollout of antiretrovirals in the developing world has ensured that 10 million people now have access to treatment, thanks to programs such as PEPFAR and the Global Fund to Fight AIDS, Tuberculosis and Malaria. As these funding sources decline, vulnerable groups need to be the focus of locally based programs to ensure the continuum of care: from identifying those infected to being diagnosed, engaged in care, retained in care and, finally, initiated and maintained on treatment. Australia should continue its commitment to support countries in our region with concentrated epidemics in vulnerable populations such as Papua New Guinea, Cambodia, Indonesia and Myanmar. Priorities are to ensure access to treatment, reduce detectable viral load and ultimately stop HIV transmission.

Despite the success of antiretroviral therapy, it is not curative, and there is an ongoing role for vaccine development and research into other novel therapies. Progress has also been made in vaccine development, with modest evidence for prevention of HIV being demonstrated for the first time in the RV 144 Thai vaccine trial. The T cell vaccine approach is also being explored, alone and in combination with neutralising antibody vaccines. Cell therapies such as transcriptional gene silencing could facilitate viral latency, resulting in functional cure. Gene therapies that prevent HIV binding to and entering cells may also be the source of breakthroughs in the future.

An HIV-free generation is closer than ever before, and can be achieved through targeted campaigns, enhanced testing and treatment rollout. Simultaneously, ongoing research into vaccines and potential cures must continue, as chronic disease management is not the end goal.

Increasing incidence of Clostridium difficile infection, Australia, 2011-2012

To the Editor: Slimings and colleagues suggest that strain typing of Clostridium difficile would give greater insight into the epidemiology of this infection in Australia,1 as it has in the United Kingdom,2 demonstrating less inhospital transmission than suspected in the past. We believe this to be the case.

In a 2-year study of symptomatic C. difficile infection at our 350-bed tertiary hospital,3 we identified 262 cases between October 2011 and October 2013. Of these, 150 (57%) were hospital-onset cases after 48 hours of admission. Ribotyping of 147 of these strains showed 44 different types. There appeared to be no secondary cases of diarrhoea from symptomatic patients in our hospital, where patients with C. difficile infection are isolated immediately after being identified.

We identified only one possible cluster of seven cases of ribotype QX076 on a rehabilitation ward between March and September 2013. This ward has only two rooms with ensuite toilet facilities, with most toilets being shared by four patients. When a toilet is flushed without the lid closed, aerosol production may lead to surface contamination within the toilet environment, increasing the risk of case-to-case transmission of C. difficile.4 Apart from this cluster, most cases were singletons. As we found many different ribotypes, it could be hypothesised that cross-transmission is generally rare, with clustering being the exception rather than the rule.

The greatest numbers of cases were found on haematology/oncology and geriatric wards. No cases involving ribotype UK 027 were identified. The most common ribotypes in hospital- and community-onset cases belonged to the UK 014/020 group. There were 53 cases (20%) of community-onset infections without evidence of health care system contact. Fifteen of these had ribotypes not found in the hospital-onset cases.

Further investigations are required to assess the role of asymptomatic carriers in hospital infection and to define the relationship to toilet facilities and cleaning efficacy.

Influenza vaccine effectiveness in Australia: results from the Australian Sentinel Practices Research Network

The Australian Sentinel Practices Research Network (ASPREN) is a network of sentinel general practitioners run through the Royal Australian College of General Practitioners and the University of Adelaide.1 It has collected de-identified information on influenza-like illness and other conditions seen in general practice across Australia since 1991. ASPREN GPs are distributed based on a target of one GP per Division of General Practice, or one GP per 200 000 population for metropolitan areas and one GP per 50 000 population for rural and remote areas. Previous evaluations of ASPREN suggest that it provides timely data on influenza-like illness (ILI), and rates consistent with those from other surveillance systems.2,3 Since 2009, GPs have collected specimens for influenza testing, allowing estimation of influenza vaccine effectiveness (VE). We estimated influenza vaccine coverage and effectiveness for the 2012 season.

Methods

Data were collected throughout 2012. A total of 275 GPs submitted data to ASPREN, of whom 110 submitted swabs. GPs are instructed to swab, at their discretion, roughly 25% of patients presenting with ILI (fever, cough and fatigue) and forward samples to SA Pathology for testing (see Appendix 1 for laboratory methods). GPs also collect demographic data (age, sex) and the year of most recent influenza vaccination. Patients provided written informed consent for a swab sample to be collected and for the results to be used for surveillance purposes. As data were de-identified and obtained in accordance with the National Health Security Act 2007 (Cwlth), human research ethics committee approval was not required.

Differences were compared by odds ratios, the χ2 test for categorical variables and the t test for continuous variables. All P values were two-sided. VE estimates were made using the test-negative design,4–6 where the exposure odds among patients testing positive by reverse transcription real-time polymerase chain reaction for influenza are compared with those for patients testing negative. We estimated crude VE as (1 − OR)*100% using logistic regression. Adjusted estimates controlled for age group (< 5, 5–17, 18–49, 50–64, ≥ 65 years), month of consultation and state or territory (random effect). VE was calculated for the epidemic period in each state or territory. Additionally, VE was estimated excluding patients who were negative for both influenza and non-influenza pathogens (pan-negative), as it has been suggested that this may reduce misascertainment bias due to false-negative influenza tests.7 All analyses were conducted in Stata version 12 (StataCorp).

Results

ASPREN GPs reported consultations for 5195 patients with ILI, of whom 1775 (34%) were swabbed. The earliest influenza cases were identified in New South Wales and Queensland, while Tasmania was the last to report a case (Appendix 2). Three-hundred and sixty-one samples were excluded: one was missing laboratory results; 121 were missing patient vaccination information; and four were missing the patient’s date of birth. Patients without vaccination information were younger by 3.7 years (P = 0.04) but had a similar sex distribution to other patients (P = 0.4). Data were plotted to identify the epidemic period (Weeks 10–43 of 2012, see Appendix 2), excluding a further 235 patients. The final sample for VE estimates consisted of 1414 patients, including 593 (42%) who were influenza test-positive (Box 1).

Demographic and clinical characteristics are shown in Box 2. Vaccination coverage among test-negative patients was 27%. Coverage was highest among those aged ≥ 65 years (84%), 37% among patients aged 50–64 years, 18% among patients aged 18–49 years, 8% among patients aged 5–17 years and lowest among those aged under 5 years, at 3%. Antigenic characterisation was performed for 41 A(not H1) viruses, all of which were A(H3); 33 of these were A/Perth/16/2009-like viruses, the strain included in the 2010–2012 vaccines (Box 2). Closer examination indicated that four (50%) of the low-reacting viruses were obtained from vaccinated patients.

Crude and adjusted VE estimates are shown in Box 3. The overall crude VE was 33% (95% CI, 13% to 48%), which decreased to 23% (95% CI, − 4% to 43%) after adjusting for age group, month and state or territory. Adjusted VE estimates were higher for influenza B (53%; 95% CI, 5% to 77%) and lower for influenza A(not H1) (13%; 95% CI, − 20% to 36%). Age-stratified estimates indicated higher VE among older patients (67%; 95% CI, 23% to 86%), and point estimates of 12% for children (< 18 years) and working-age adults (18–64 years). Estimates changed little when pan-negative patients were excluded (Box 3).

Discussion

Our study showed low overall adjusted VE of 23% for the 2012 season. However, point estimates were higher against influenza B (53%) and lower against influenza A(not H1) (13%). If we assume, based on antigenic data, that the majority of A(not H1) viruses were A(H3), then it is unsurprising that this estimate was so low. For example, the 2011–12 estimate for A(H3) reported from Europe was 25% (95% CI, − 6% to 47%8), and the United Kingdom estimate was 23% (95% CI, − 10% to 47%9). Suboptimal VE against A(H3) has been partially attributed to poor match of the circulating strains to the vaccine.10–12 Indeed, the limited antigenic data available suggested four out of 10 vaccinated patients had viruses antigenically dissimilar to the vaccine strain. Moreover, the vaccine component for A(H3) was updated for the 2013 southern hemisphere season.13

A somewhat surprising finding of this study was the strong protective effect of the vaccine among older people. During the 2011–12 European season, VE for people ≥ 60 years was 15% (95% CI, − 33% to 46%), while for working-age adults (15–59 years) it was 63% (95% CI, 26% to 82%).8 This is in direct contrast with the estimates reported here of 12% (95% CI, − 22% to 36%) for working-age adults and 67% (95% CI, 23% to 86%) for older people. In Spain, VE has been observed to be high (85%; 95% CI, − 8% to 98%) for older patients presenting within 100 days of vaccination.14 Our data did not indicate earlier presentation after vaccination by older patients compared with younger patients and did not allow us to stratify by time since vaccination. In addition, we did not collect data on the presence of conditions predisposing to severe influenza, such as asthma, obesity and immunocompromising conditions. Failure to adjust for this important confounder15 may have accounted for the unexpected age effects.

Our study was limited by incomplete vaccination data on a number of patients. We were unable to exclude patients on the basis of presenting too soon after vaccination or too late after symptom onset,4,16,17 which may contribute to misclassification bias.

To overcome these limitations in future seasons, we have revised the data collection procedures for ASPREN GPs.

1 Number of consultations by week and influenza status for pooled state and territory data, 2012*

* Data shown include only consultations used in the vaccine effectiveness estimation.

2 Characteristics of patients with an influenza-like illness who were recruited and swabbed by general practitioners in the Australian Sentinel Practices Research Network in 2012,* by state or territory†

Characteristic

Total

ACT

NSW

NT

Qld

SA

Tas

Vic

P‡

Population, 000s

20 535.20

381.7 (2%)

7381.1 (36%)

237.8 (1%)

4638.1 (23%)

1667.5 (8%)

512.9 (2%)

5713.0 (28%)

  

No. of patients

1414

93 (7%)

470 (33%)

46 (3%)

406 (29%)

138 (10%)

192 (14%)

69 (5%)

  

Sex

                  

Female

704 (51%)

59 (64%)

214 (46%)

22 (49%)

194 (49%)

73 (53%)

107 (57%)

35 (51%)

  

Male

689 (49%)

33 (36%)

248 (54%)

23 (51%)

205 (51%)

65 (47%)

81 (43%)

34 (49%)

0.03

Age group (years)

                  

< 5

115 (8%)

7 (8%)

43 (9%)

4 (9%)

31 (8%)

14 (10%)

11 (6%)

5 (7%)

  

5–17

231 (16%)

11 (12%)

90 (19%)

10 (22%)

70 (17%)

17 (12%)

22 (11%)

11 (16%)

  

18–49

688 (49%)

61 (66%)

188 (40%)

26 (57%)

211 (52%)

64 (46%)

104 (54%)

34 (49%)

  

50–64

238 (17%)

4 (4%)

97 (21%)

5 (11%)

55 (14%)

27 (20%)

36 (19%)

14 (20%)

  

≥ 65

142 (10%)

10 (11%)

52 (11%)

1 (2%)

39 (10%)

16 (12%)

19 (10%)

5 (7%)

0.002

Vaccination status

                  

Unvaccinated

1080 (76%)

67 (72%)

370 (79%)

40 (87%)

331 (82%)

92 (67%)

128 (67%)

52 (75%)

  

Vaccinated

334 (24%)

26 (28%)

100 (21%)

6 (13%)

75 (18%)

46 (33%)

64 (33%)

17 (25%)

< 0.001

Influenza status

                  

Negative

821 (58%)

57 (61%)

287 (61%)

26 (57%)

220 (54%)

92 (67%)

104 (54%)

35 (51%)

  

Positive

593 (42%)

36 (39%)

183 (39%)

20 (43%)

186 (46%)

46 (33%)

88 (46%)

34 (49%)

0.07

A(H1)pdm09

8 (1%)

0 (0)

1 (0)

3 (7%)

1 (0)

0 (0)

0 (0)

3 (4%)

  

A(not H1)

479 (34%)

21 (23%)

154 (33%)

11 (24%)

148 (36%)

42 (30%)

85 (44%)

18 (26%)

  

B

106 (7%)

15 (16%)

28 (6%)

6 (13%)

37 (9%)

4 (3%)

3 (2%)

13 (19%)

< 0.001

Non-influenza infection

                  

Negative

1080 (76%)

74 (80%)

340 (72%)

35 (76%)

322 (79%)

99 (72%)

154 (80%)

56 (81%)

  

Positive

334 (24%)

19 (20%)

130 (28%)

11 (24%)

84 (21%)

39 (28%)

38 (20%)

13 (19%)

0.1

HI result§

(n = 74)

(n = 8)

(n = 32)

(n = 3)

(n = 16)

(n = 7)

(n = 3)

(n = 5)

  

Not recovered (cell culture)

32 (43%)

3 (38%)

13 (41%)

1 (33%)

12 (75%)

0 (0)

1 (33%)

2 (40%)

  

B/Brisbane/60/2008 low reactor

1 (1%)

0 (0)

0 (0)

0 (0)

0 (0)

1 (14%)

0 (0)

0 (0)

  

A/Perth/16/2009-like

33 (45%)

3 (38%)

17 (53%)

2 (67%)

4 (25%)

4 (57%)

1 (33%)

2 (40%)

  

A/Perth/16/2009 low reactor

8 (11%)

2 (25%)

2 (6%)

0 (0)

0 (0)

2 (29%)

1 (33%)

1 (20%)

0.07

ACT = Australian Capital Territory. NSW = New South Wales. NT = Northern Territory. Qld = Queensland. SA = South Australia. Tas = Tasmania. Vic = Victoria. HI = Haemagglutination inhibition. * Values are number (% of total) unless otherwise indicated. † Excluding WA. ‡ P for the χ2 test comparing states. § HI assays were performed on a selection of viruses only.

3 Estimates of vaccine effectiveness (VE) for 2012

 

Cases

Non-cases

VE estimate
 

No.

Vaccinated, no. (%)

No.

Vaccinated, no. (%)

Crude, % (95% CI)

Adjusted,* % (95% CI)

Influenza-positive v influenza-negative

        

Influenza A and B

593

116 (20%)

821

218 (27%)

33% (13% to 48%)

23% (− 4% to 43%)

Influenza A

487

103 (21%)

    

26% (3% to 43%)

15% (− 17% to 38%)

Influenza A(not H1)

479

103 (22%)

    

24% (1% to 42%)

13% (− 20% to 36%)

Influenza B

106

13 (12%)

    

61% (30% to 79%)

53% (5% to 77%)

Influenza-positive v non-influenza pathogen-positive

        

Influenza A and B

593

116 (20%)

313

77 (25%)

25% (− 3% to 46%)

24% (− 12% to 49%)

Influenza A

487

103 (21%)

    

18% (− 15% to 41%)

13% (− 32% to 42%)

Influenza A(not H1)

479

103 (22%)

    

16% (− 18% to 40%)

11% (− 34% to 41%)

Influenza B

106

13 (12%)

    

57% (19% to 77%)

56% (− 1% to 81%)
             

VE for influenza A and B, stratified by age group

        

Children (< 18 years)

190

10 (5%)

156

9 (6%)

9% (− 129% to 64%)

12% (− 125% to 66%)

Working-age adults (18–64 years)

352

76 (22%)

574

133 (23%)

9% (− 26% to 34%)

12% (− 22% to 36%)

Older people (≥ 65 years)

51

30 (59%)

91

76 (84%)

72% (38% to 87%)

67% (23% to 86%)

* Adjusted for age group (<18, 18–64, ≥ 65 years), month of consultation and state or territory (random effect).

AIDS, loss and renewal

Opening address to the 20th International AIDS Conference, Melbourne, Australia, 20 July 2014

Jonathan Mann, loss and grief

We who gather at this conference in Melbourne are no strangers to cruelty and loss. We know about suffering, irrationality and hatred. We have not been free of these forces for a single day since HIV/AIDS first appeared in our midst 30 years ago.

Every one of us can tell stories about horrible acts and brutal conduct that have added to the misery and danger faced by people living with HIV and by those who love and care for them. We know of people who have died, or are dying, of AIDS; who are seeking love and the human right to respect and to life-saving health care. We know many who are denied justice and human empathy. We are here to affirm that there is another path. We point the way. It is why we have come to Melbourne. It is why we must lift our voices. This is not a time for silence.

In the immediate loss of friends and colleagues who were coming to the conference on MH17, we are reminded, most cruelly, of the earlier death of Jonathan Mann: the first director of the Global Program on AIDS of the World Health Organization. This inspired humanitarian, who did so much to alert the world to the dangers of AIDS, perished with his wife and a plane full of passengers off St John’s, Newfoundland, in 1998. He too was on his way to a conference on AIDS. He too had precious gifts to impart. It was a terrible loss to us and to the world. His memory drives us on.

When I was asked to give this opening plenary weeks ago, I little thought that the plane crash that caused those deaths would be multiplied and magnified, this time by deliberate conduct of human beings. That it would kill delegates to our conference and many other peaceful travellers going about their lives, with no harm in their hearts to others. How cruel and self-centred these murders appear to be. How reckless and outrageous to make such means available to zealots. How much more pain do we have to face in the world of AIDS before we are through this bleak experience?

Be in no doubt that irrational cruelty is, and will remain, our companion on this journey. It requires us to remember the past president of the International AIDS Society, Joep Lange, and his wife. To think of all the other delegates who expected to be sitting here with us in this hall at this occasion. They devoted themselves to scientific research, to patient care, to law reform and human rights. Would that we could turn the clock back. Would that we could laugh, and think, and dream, and struggle shoulder to shoulder with them here tonight. Yet we cannot.

No strangers to suffering

So we think of them and of others who have suffered, or are suffering, through irrational, unjust and destructive acts:

  • Of Dwayne Jones, murdered in Montego Bay, Jamaica, in July 2013 because he attended a dance party and was condemned as gay. He was beaten, stabbed, shot and then run over by a car and dumped in a ditch. No one brought to justice. We think of David Kato, a gay activist in Uganda. He too was killed, in January 2011 — hammered to death for opposing the anti-homosexual law that has now been brought into effect in his country. We think of Eric Lembembe, a gay activist in Cameroon who was murdered in Yaounde in July 2013. We think of Charles Omondi Racho, who was killed and dumped by the roadside in western Kenya. The violence does not end. Yet brave reformers continue to stand up for their idea of equality and to suffer brutality as a result. Forgive me for speaking of the dead. But their suffering, in our context, is a demand for action.
  • We think of the mothers and families in South Africa who, inspired by global efforts, challenged the denial to them of antiretrovirals which, for a mere dollar, would save their babies from HIV infection.
  • We think of sex workers, drug users, prisoners, transsexuals, the disabled people living with HIV. For them our conference theme of “Nobody left behind” must often seem a cruel irony.
  • We think of the bitter disappointments of legislatures that have failed to act. And of courts that have shown no insight. Like the recent decision in India that reversed the noble judgment of the Delhi High Court in the Naz Foundation case invalidating the colonial law on gays.
  • We think of horrible new laws spreading throughout Africa and the violence that they breed. That violence sets back the struggle against AIDS.
  • And we think of the lonely patients dying without hope. And the injecting drug users and other outcasts, rejected by family and society, where therapy would restore their lives and sense of self-worth.

These thoughts too propel us on.

All of us in Melbourne, and many far away, know that those of our companions who were lost on their way to join us also knew these things. They too had these images in their minds, as they set out to this continental and welcoming country. They would expect us to pick up our shattered spirits. They would demand that we renew and redouble our efforts. They would see those efforts as small but vital pieces of the great human puzzle that seeks to build a world that respects human rights, and heralds the day when the suffering of AIDS will be over.

Apologies and affirmations

I owe many apologies for presuming to speak at this moment of grief and pain:

  • Apologies because the voice should really belong to those who knew and could tell us the simple stories of our friends who have been lost. And of the individual and collective contributions that they have made to the struggle in which we are still engaged.
  • Apologies because I am not a person who is living with HIV or AIDS. Jonathan Mann always insisted on the importance of listening to the voices of those who are infected and understanding what they say. Who will ever forget the electric words of Justice Edwin Cameron, at the Durban Conference, as he castigated the government of his country for the crazy, wrong refusal (now reversed) to acknowledge the true science of HIV.
  • Apologies because I am not a disabled person facing HIV. I know now that it had been hoped, and urged, that a voice would be given on this occasion to such a speaker so that truly no one would be left behind. I hope that such voices will be raised in these days in Melbourne, loud and clear.

Yet I can speak as one who has tasted the bitter dregs of discrimination and hatred, because of my sexuality. By reason of that ethos, I lost 12 greatly loved friends in the early days of the epidemic. They too suffered discrimination, hostility, indifference, disgust. But they overcame these emotions. They lived and then they died in the sure conviction that things would get better. And so, through science, and education, and knowledge and human kindness, this has happened. It has occurred in Australia and in other lands. Step by step it has happened. Yet the enlightenment has still to reach many places where all too many get left behind.

Six vital lessons

In 1988, I spoke not at the opening but at the closing session of the Stockholm AIDS Conference. Re-reading my remarks has taught the essential simplicities of the key messages that must guide us still, here in Melbourne. They were true then. They are still true today. We must rediscover their clarity and direction. By repeating the basic lessons, we may gain success in persuading the sceptical. We may influence change in the directions essential if no one is to be left behind.

First, there is the vital importance of science. All laws and strategies to deal with HIV and AIDS must be based on science, not mythology and prejudice. Science has brought us the miracle of triple combination therapy and new lines of treatment. Science has relieved suffering. It has made a big difference. And nearly 15 million people with HIV are now the beneficiaries.

Second, we must listen to the voices. As Jonathan Mann taught us, people living with HIV and AIDS must be at the very forefront of our efforts. They will bring us realism. They will demand action.

Third, we must help political leaders to understand the AIDS paradox, taught by Jonathan Mann. Paradoxically, and almost counterintuitively, the best way in current circumstances to get people to testing and to reduce the toll of death and suffering is not by punishing and isolating those infected with HIV. It is actually by protecting them. By entering their minds. By getting them to seek help. Law and policy must be made part of the solution, not part of the problem, of AIDS.

Fourth, the HIV paradox can be explained and accepted by politicians, including on both sides of the political divide. No side in politics has a monopoly on wisdom or compassion on AIDS. Many have contributions to make. We saw this in Australia in the early frantic days, 30 years ago. Dr Neal Blewett, Labor federal health minister, and his Coalition counterpart, Dr Peter Baume, came together to embrace the AIDS paradox. They reached out in protection of gay men, sex workers, injecting drug users and others. In Australia, throughout the Hawke, Keating, Howard, Rudd, Gillard and Abbott governments, we have retained this steady course. It is something we can be proud of. It is a strategy with occasional imperfections and failings. But we can put it before the world as a basic model for effective AIDS policies.

Fifth, we have resisted many traditional approaches to epidemics. From the earliest days, it was clear that quarantine, law’s conventional response, would not work. The early promises of a medical “silver bullet” — a cure or a vaccine — did not eventuate. They continue to elude us. Yet the antiretrovirals and then the dramatic outreach to provide therapy as prevention to 15 million people made human rights a reality. Perhaps after all, no one would be left behind.

Sixth, in many countries, leaders have tragically failed to embrace the paradoxes of AIDS. They have talked about action. They have received the subventions for antiretroviral drugs. But they have failed dismally to defend the human rights and lives of their own citizens. It is beyond time for the adoption by these leaders of initiatives that work. Without such reforms and also without changing the global laws on intellectual property, people will die needlessly. It is as simple as that. Someone must tell those who will not act the practical facts of life in our world. They cannot expect taxpayers in other countries to shell out, indefinitely, huge funds for antiretroviral drugs if they simply refuse to reform their own laws and policies to help their own citizens. Mickey Mouse in Fantasia in 1940 portrayed the global state we are now in. Too many countries are leaving the tap running full pelt. To sweep up the flood with a solitary broom is not going to work. We must turn off the taps. And that will not happen without an embrace of the kind of laws and policies we have long adopted in Australia.

Sustaining the Australian model

Do not think for a moment that it was easy for us to do as we have done in this country. It was hard. But it has held firm over 20 years.

So how have we maintained our model on the AIDS response for so long? AIDS activists have done so by working closely and respectfully with political leaders of every persuasion. By appealing to human empathy, to human rights and to the cold realities of economics and the costs of leaving the taps running.

Australia’s Prime Minister, Tony Abbott, and his government, have engaged with AIDS activists. They have worked with them in search of common ground. This dialogue surely has lessons for other countries. We can learn from them. But I believe they can learn from us:

  • Reversing the predecessor government’s decision, the Abbott government in Australia has restored Australia’s practical commitment to the Global Fund. It has promised $200 million in the place of a zero subvention that reversed past commitments.
  • Our Foreign Minister, Julie Bishop MP, has been a stalwart defender of Australia’s regional overseas aid model. The government knows that viruses can enter this country far more easily than boats. They realise that it is in our interests, as much as those of others, to help our neighbours to reverse the pandemic in their own lands. Julie Bishop has also insisted, as Jonathan Mann did at the outset, that AIDS is a major women’s health issue.
  • As a conviction politician and an unabashed conservative, Tony Abbott may be able to help us in this world to reach out to those political leaders, at the coming G20 Summit in Brisbane and in the meetings of the Commonwealth of Nations, to break the deadly logjam of inaction or wrong actions. Many of those who have left the taps of infection still open are more likely to listen to him than to others that talk a language that they abhor. Conservatives can be vital allies in the struggle against AIDS. We should never forget that it was President George W Bush in the United States who established the PEPFAR fund and promoted the Global Fund that has helped save millions of vulnerable lives.

Renewing our commitment

And so, once again, we remember Jonathan Mann and meet together in this struggle. We come to renew our commitment to ourselves, to our lost friends, and to the strategies that work. Rich and poor. Men and women. People living with HIV and those who love and support them. Religious and non-religious. Straight and gay. Liberals and conservatives. We are in this together.

To those who live with HIV, to those who have died of AIDS and to those who have died in the struggle to advance the principles of the Melbourne Declaration, this conference should give a renewed commitment: to continue down the paradoxical path that has been shown to work. Never to allow the forces of cruelty and ignorance to deflect us. And never to be content while anyone is at risk of being left behind.

Crusted scabies: a clinical marker of human T-lymphotropic virus type 1 infection in central Australia

To the Editor: Scabies continues to cause significant morbidity among residents of Indigenous communities.1 In the Northern Territory, scabies underlies most cases of Streptococcus pyogenes pyoderma, a major cause of poststreptococcal glomerulonephritis and rheumatic fever.1,2 The increased risk of scabies resulting from infection with the human T-lymphotropic virus type 1 (HTLV-1) has received little attention. This human retrovirus is endemic to much of Western Australia, South Australia and the NT. In a recent study, 33% of nearly 1600 Indigenous adults tested at Alice Springs Hospital (ASH) were infected.3

We report the case of a 36-year-old HTLV-1-infected Indigenous man from an Alice Springs town camp who was admitted to ASH with severe crusted scabies. Since early childhood, he had been hospitalised six times with recurrent scabies and had also been admitted with intestinal strongyloidiasis and chronic suppurative lung disease. On examination, he had confluent areas of hyperkeratosis with profuse skin shedding, deep skin cracks, bleeding and ooze involving the lower half of his body (Box). Skin scrapings revealed numerous scabies mites. Full blood examination showed an eosinophilia (2.6 × 109/L; reference interval [RI], 0–0.4 × 109/L) and markedly elevated IgE levels (177 000 kU/L; RI, < 110 kU/L). HTLV-1 infection was confirmed by western blot at the National Serology Reference Laboratory. The HTLV-1 proviral load was high, at 1.29 per 100 peripheral blood mononuclear cells. High HTLV-1 proviral loads have been associated with strongyloidiasis and HTLV-1-driven inflammatory diseases.4 Serological testing for Strongyloides was negative and no other cause of immunodeficiency was found. Treatment of household contacts and cleaning of accommodation proved difficult due to resource limitations and the number of houses in which he stayed. Three weeks after discharge, a 41-year-old woman with HTLV-1 infection from the same town camp was admitted with typical scabies.

Crusted scabies is considered to be a clinical indicator of HTLV-1 infection in HTLV-1-endemic areas.4,5 As in this case, re-infection and relapse are common, and failure to effectively manage core transmitters results in a cycle of infection that demoralises communities and carries the attendant risks of secondary bacterial infection.1,2 The risks of complications are particularly high in HTLV-1-endemic central Australia, where HTLV-1 infection is also associated with blood stream infections, strongyloidiasis, pulmonary disease, leukaemia, infective dermatitis and myelopathy.3 The growing number of life-threatening sequelae that affect Indigenous Australians with HTLV-1 infection are a compelling reason to urgently implement a program to control HTLV-1 transmission among the Indigenous population of central Australia.

Extensive hyperkeratosis with profuse skin shedding, deep skin cracks, bleeding and ooze on the patient’s thigh

Crusted scabies in remote Australia, a new way forward: lessons and outcomes from the East Arnhem Scabies Control Program

Case record

An 8-year-old girl had received treatment for scabies at a health centre in a remote Northern Territory Arnhem Land community on 32 occasions since her birth. Seventeen of these occasions required treatment with parenteral antibiotics for secondary infection. Many episodes were noted to involve the “whole body” and on two occasions she had required hospitalisation. During this time, she was also found to have a low body mass index and failure to thrive.

The girl was often found crying from pain and itch and had been excluded from school for extended periods because of her infectivity. Her family reported that she was bullied by her peers because of the disfigurement of her skin. Her frequent bouts of disfiguring scabies, skin sores and weight loss had led to referrals to child and family services over concerns of parental neglect.

The girl was brought to the attention of East Arnhem Scabies Control Program staff in 2011. Contact tracing was initiated, and a senior member of the family, with whom the girl shared a room, was found to have Grade 2 (moderate) crusted scabies. Clinical audits showed that the senior family member had repeatedly presented with crusted scabies since 1996. After a hospital admission in 2006, she had avoided contact with health services, even though her skin condition deteriorated, reportedly due to fear of the treatment regimen involving extended isolation in hospital and the use of creams that caused a burning skin sensation.

The senior family member was subsequently treated for crusted scabies and the girl and other household members were treated for simple scabies. The woman was then enrolled in a pilot program to prevent recurrent disease. During 19 months of follow-up with the preventive regimen in place for the woman, the girl’s skin condition improved and required no further specific management other than treatment for scabies on one occasion.

Crusted scabies is a highly infectious, debilitating and disfiguring condition (Box 1) that develops when scabies mite proliferation is not controlled by the host immune system. It is characterised by hyperkeratotic skin crusts and mite loads of a million or more on affected individuals (up to 4700 mites per gram of skin), compared with a total of 10–15 mites in simple scabies.2 Crusted scabies is generally seen in immunocompromised patients3 and historically had a 5-year mortality rate of up to 50%.4 However, a multidose regimen of ivermectin, benzyl benzoate and keratolytic agents introduced in 1996 at the Northern Territory’s Royal Darwin Hospital has led to a significant decrease in the annual mortality rate, to 1.6%.4 Unmanaged crusted scabies is known to cause outbreaks of simple scabies and contributes to the hyperendemic rates seen in many remote communities.4,5

While rare in urban settings, rates of crusted scabies reported in remote Aboriginal communities of northern Australia are the highest in the world.4,6 A review of 78 patients admitted to hospital for crusted scabies in northern Australia over 10 years found nearly all (97%) were Aboriginal people from remote communities, and in nearly half of these patients no underlying immune defect was found.4 From its inception in early 2011 to April 2014, active case finding by the East Arnhem Scabies Control Program (EASCP) across 11 remote communities of northern Australia and their homelands had confirmed 20 cases (1.8 cases per 1000 population).

There is currently no register or follow-up of people living in scabies-endemic areas who are at risk of developing recurrent crusted scabies. Recurrences are only detected if patients self-present to health services and are seen by a clinician familiar with the condition. Current protocols treat the condition acutely. The EASCP postulated that the lack of follow-up surveillance and chemoprophylaxis was inadequate for patients returning to endemic areas.

Here, we present results of routine monitoring and evaluation of the EASCP between August 2011 and June 2013, from the three remote East Arnhem communities in the NT where we had data sharing agreements to access clinical records and the operational capacity to deploy a preventive program. Individual consent was obtained to publish case history details. Publication of EASCP monitoring data was approved by the board of Miwatj Health Aboriginal Corporation and the Human Research Ethics Committee of the NT Department of Health and Menzies School of Health Research (approval number 2013-2055).

The East Arnhem Scabies Control Program

The EASCP was established in early 2011 and is a joint initiative of One Disease, Miwatj Health Aboriginal Corporation and the NT Government Department of Health. The consultancy EveryVoiceCounts was contracted to design the program and guide implementation. More information on the EveryVoiceCounts learning partnership model used to design the program is available at http://www.everyvoicecounts.org/scabies-partnership. For more on the EASCP, see https://1disease.org.

The EASCP was developed to enhance regional efforts to reduce the impact of scabies as a public health problem in remote communities of Arnhem Land and is a service delivery program integrated into existing health services. The program’s first goal was to reduce the burden of crusted scabies on affected individuals and households in participating East Arnhem communities. This goal was the result of consultations and baseline clinical audits that indicated a significant burden of illness and ongoing disruption to quality of life arising from unmanaged crusted scabies. Patients we encountered in remote communities in 2011 suffered similar stigma and disfigurement to those described in a case report of crusted scabies published more than 60 years earlier (Box 1).1 The EASCP also recognised that better management of these “core transmitters” was a foundation of broader scabies control efforts.

In late 2011, the EASCP convened a medical working group to update the scabies and crusted scabies guidelines in the Central Australian Rural Practitioners Association (CARPA) Standard treatment manual. Drawing on experience with a patient who had successfully used short-term treatment creams in a preventive fashion, as well as a preventive model proposed in 2004,7 the working group approved a provisional protocol to prevent recurrences of crusted scabies, which the EASCP then trialled.

EASCP crusted scabies case management protocol

The EASCP used active case finding to identify people with crusted scabies. When cases were confirmed in one of the three communities where EASCP had operations, the patients were first treated (in hospital or, when this was declined, in the community) using a protocol developed by the Royal Darwin Hospital.8,9 Patients were then enrolled in the new preventive care regimen, which involved:

  • regular (every 1–4 weeks) skin checks looking for signs of recurrent crusted scabies;
  • frequent use of a keratolytic cream (to limit the build-up of keratin crusts, where mites live and multiply in crusted scabies) combined with a moisturiser; and
  • regular (every 2–4 weeks) use of a scabies (acaricide) cream. The frequency depended on the likely level of recurrent exposure to mites (eg, in a household with many young children, fortnightly applications were used). Benzyl benzoate was selected because of the limited risk of resistance developing with this agent. An initial test application of benzyl benzoate ruled out the side effect of transient burning sensation on the skin.

This clinical protocol was implemented by the EASCP through a long-term household case management approach, focused on developing therapeutic rapport with patients and senior members of households. The EASCP’s early consultations with care providers and patients highlighted significant fear and stigma associated with the disease and a reluctance to engage with health services. Given the chronicity of the disease, the long-term goal was adherence to the treatment regimen and ultimately self-management of the condition. We aimed to achieve this through consistency of staff, regular supply of the preventive creams needed for self-management, and reinforcing the household costs of disease recurrence.

Active case finding and EASCP inclusion criteria

Cases

From August 2011, the EASCP investigated patients identified by health centres as having recurrent scabies or crusted scabies. The EASCP also examined the NT hospital database and related discharge summaries to find patients from participating communities who had been treated for crusted scabies. An experienced EASCP clinician then examined the patient and confirmed or excluded the diagnosis of crusted scabies, and this was verified by visiting dermatologists and infectious disease specialists.

Sentinel contacts

EASCP monitoring paired each confirmed case with a household child contact. The contacts served as sentinels of recurrent disease in the cases and to track their infectivity, as our baseline data showed that most patients with active disease did not present to health services. Contacts were confirmed to have the same primary residence as the cases with whom they were paired. Crusted scabies was excluded in the contacts. Sentinel contacts often had a history of recurrent simple scabies and had been referred to the EASCP for management. Due to capacity constraints, where multiple contacts were known to the EASCP, the contact with the most extensive history of presentation for scabies was selected as the sentinel.

Evaluation of EASCP case management protocol

Between August 2011 and June 2013, seven patients in the three communities under evaluation were confirmed as having crusted scabies and were enrolled in preventive case management. These seven patients and their seven sentinel contacts are included in this review.

EASCP monitoring data consisted of EASCP, health centre and hospital clinical records before and after the preventive care protocol was introduced. The outcome measures examined were the number of presentations involving recurrences of crusted scabies in cases and recurrent simple scabies in contacts. To avoid double counting, each new presentation was recorded as one episode (follow-up visits for multidose treatments were counted only once), and only one episode was recorded if presentations led to referrals to hospital or the health centre for management. Search parameters for the outcome measures were consistent for the intervention (during preventive case management) and control (before preventive case management) periods. However, screening of cases for recurrence was active (1–4-weekly skin checks) during the intervention period, but passive (self-presentation) during the control period. This is likely to significantly bias results towards the null.

The duration of case management was from the time of case identification and consent to June 2013. We examined the change in the number of outcome events during the intervention period compared with those during a pre-intervention control period of the same duration for each case and contact. The Wilcoxon signed-rank test was used to determine statistical significance, and P values < 0.05 were considered significant. Data were analysed using Stata version 11 (StataCorp).

Detailed baseline data and monitoring methods can be found in the Appendix.

Baseline findings

We audited a combined 57 years of clinical records for the seven cases (26 years) and seven contacts (31 years). Among cases, one patient was aged 20–39 years and six were aged 40–59 years. Among contacts, three were aged 0–4 years, three were aged 5–9 years and one was aged 10–14 years.

No immune defect was recorded in the seven cases, apart from one patient who had crusting in a neuropathic limb. Six of the seven patients had active crusting of moderate to severe grade (ie, high infectivity) at the time of first review by the EASCP. Of these six, four had not presented to health services despite having recurrent disease and were only identified through active surveillance. Most (4/6) declined hospitalisation.

Cases presented with recurrent disease a median of five times per year (range, 1–9) during the 26 years of record review. Paired sentinel contacts presented with simple scabies (with or without skin sores) a median of five times per year (range, 0.4–11) during 31 years of record review. Combined case–contact pairs presented a median of 12 times per year (range, 4–16) with presentations related to simple or crusted scabies during the combined 57 years of audited records.

Child contacts had a median of 10 presentations (range, 5–11) for simple scabies and sores in their first year of life, and most contacts had multiple episodes of scabies described as “extensive/whole body”. Nearly all of the paired child contacts had suffered periods of recurrent scabies and sores associated with weight loss and failure to thrive. Five of these children had been referred to child and family services over concerns of parental neglect, where recurrent scabies and sores featured in the referral.

EASCP case management findings

From August 2011 to June 2013, a cumulative total of 99 months of preventive case management was undertaken in the seven cases (mean duration of enrolment in care, 14 months; range, 3–20 months). Clinical records from a matching 99-month control period immediately before preventive case management were also reviewed, making a cumulative total of 198 months before and during the intervention. Clinical records for the corresponding 198 months were examined for paired contacts.

During the 99-month intervention period, cases were reviewed at 1–4-weekly intervals. For the seven cases, a total of 245 skin checks were performed in the community (every 1.6 weeks on average). The EASCP recorded no reports of adverse effects from the preventive treatment regimen.

For the seven cases, we detected a significant 44% reduction in clinically diagnosed episodes of recurrence of crusting (from 36 to 20; P = 0.025) during the intervention period, compared with the control period (Box 2). We also detected a 56% reduction in episodes of hospitalisation (from 9 to 4; P = 0.09) and an 80% reduction in days spent in hospital as a result of recurrence of crusted scabies (from 173 to 35; P = 0.09), compared with the control period. However, these changes were not significant and are due to the number of cases that had not recorded a hospitalisation and, in light of our baseline data, are likely to indicate non-presenters.

For the seven paired contacts, we detected a statistically significant 75% decrease in the combined number of hospital admissions and presentations to local health centres with scabies and skin sores (from 28 to 7; P = 0.017) during the intervention period, compared with the control period (Box 2). We also detected a significant 58% reduction in paired case–contact presentations (from 64 to 27; P = 0.016).

Limitations of the evaluation

The nature of the analysis (involving audit of program monitoring records) and the small sample size limit the generalisability of our findings. The routine nature of data collection means there is interoperator variability, and diagnoses made on clinical grounds allow for false-positive results. For cases, this is likely to be low because recurrences were based on detection of characteristic skin lesions in patients who had a hospital- or specialist-confirmed history of crusted scabies. Importantly, the criteria were consistent during the intervention and control periods. We believe our method of analysis is conservative, with the dominant bias being towards the null, as surveillance for recurrences was active during the intervention period, compared with passive surveillance during the control period. The use of a primary contact to track disease transmission also limits generalisability of the study. However, the contacts act as useful sentinels of recurrent disease and infectivity of cases. EASCP monitoring is ongoing, and subsequent analyses will improve the generalisability of findings as the duration of follow-up and number of managed cases increases.

Lessons

EASCP’s program monitoring and evaluation findings offer important lessons for the control of crusted and simple scabies in Australia.

Lesson 1: Current passive surveillance for recurrences leads to likely underdetection of crusted scabies in scabies-endemic areas.

Lesson 2: Combined presentations of cases and sentinel contacts suggest significant scabies transmission from cases to household contacts, increasing the risk of complications from chronic renal and rheumatic heart disease. Repeated episodes of scabies and skin sores are likely to significantly impair household quality of life,10 and to increase the risk of repeated exposure to group A streptococcus isolates, which has been associated with increased risk of chronic renal and rheumatic heart disease.11,12

Lesson 3: Skin disfigurement and weight loss associated with recurrent scabies and skin sore infections may have led to child contacts being misdiagnosed as victims of parental neglect. Recurrent infections can lead to weight loss as a result of altered metabolism, nutrient loss and decreased appetite. Malnutrition in turn lowers immunity and susceptibility to infections.13–15 Thus, in contacts of patients with crusted scabies, weight loss and skin disfigurement associated with severe recurrent scabies and skin sores are likely to signify ongoing disease transmission from infected patients, rather than parental neglect.

Lesson 4: EASCP case management appears to reduce the burden of illness in patients with crusted scabies. Due to the differential screening methods used in the intervention (active) versus control (passive) periods, the actual reduction in recurrences during EASCP preventive care (and duration of time patients remained disease-free, compared with time spent with active crusting) is likely to be significantly greater than the 44% decrease we observed.

Lesson 5: EASCP case management reduces simple scabies presentations in sentinel contacts. The decrease we detected in presentations of contacts is likely to signify less time spent unwell from recurrent scabies and sores and thus less suffering, disfigurement and stigmatisation. EASCP case management thus provides a way to reduce the long-term disruption to quality of life for these households.10 At the community level, our findings suggest the improved control of an important driver of scabies endemicity.3–5,11 The reduced infectivity of cases can be explained by two novel features of the EASCP preventive care regimen: ongoing skin checks, allowing early detection of recurrences; and regular use of keratolytic and scabicide agents, both of which inhibit mite hyperinfestation.

Recommendations

Based on the EASCP’s preliminary findings, and in light of the disruption caused by the condition to affected households, we recommend that patients with crusted scabies living in scabies-endemic areas be offered this preventive care regimen. The crusted scabies guidelines in the forthcoming 6th edition of the CARPA Standard treatment manual have been revised to feature this model of care, and our recommendations to facilitate its wider adoption are shown in Box 3.

1 The disfiguring plaques of crusted scabies

A: Photograph of crusted scabies reproduced from a 1948 case report.1 B: Crusted scabies of the elbow. C: Crusted scabies of the foot (partially treated).

2 Review of cases of crusted scabies and paired contacts before and during East Arnhem Scabies Control Program (EASCP) household preventive case management

 

Control (pre-intervention) period

Intervention period

Change

P

Cases (n = 7)

        

Months audited

99

99

—

  

Hospital admissions for recurrences

9

4

− 56%

0.09

Days in hospital

173

35

− 80%

0.09

EASCP or health centre-diagnosed recurrences

27

16

− 41%

0.04

Total recurrences (rate per year)

36 (4.4)

20 (2.4)

− 44%

0.025

Contacts (n = 7)

        

Months audited

99

99

—

  

Hospital admissions for severe infected scabies

3

0

− 100%

0.16

Days in hospital

13

0

− 100%

0.16

Health centre presentations for scabies skin sores

25

7

− 72%

0.017

Total scabies-related presentations (rate per year)

28 (3.4)

7 (0.8)

− 75%

0.017

Paired case–contact presentations

64

27

− 58%

0.016

3 Recommendations for implementing the preventive care regimen of the East Arnhem Scabies Control Program (EASCP)

Wider adoption of the preventive regimen for patients with crusted scabies living in scabies-endemic areas will require:

  • Ongoing program monitoring and operational research to refine preventive case management protocols and document the transferability of programs
  • Active surveillance for recurrences and a chronic disease case management approach to crusted scabies care — a long-term therapeutic approach is more likely to lead to better outcomes than an acute-outbreak approach and to overcome the fear, stigma and avoidance of health services evident in most patients’ clinical histories
  • Support from regional disease control and chronic disease programs for health centres to adopt this new model of care in communities
  • A regional register to facilitate continuity of care when patients move between communities — for this, a diagnostic criterion for “recurrent” crusted scabies must be developed, and we recommend adopting Grades 2–3 of the Royal Darwin Hospital grading scale as a criterion for inclusion in ongoing preventive care9
  • Investigation of the household to exclude contact with crusted scabies in situations where recurrent scabies, skin sores and weight loss are seen in a child; in households where crusted scabies is present, a diagnosis of parental neglect due to recurrent scabies and weight loss in children should be made with extreme caution
  • Urgent research and development to bring easier-to-use and more effective crusted scabies (and simple scabies) therapies, including immunotherapies, to the market

Cost of best-practice primary care management of chronic disease in a remote Aboriginal community

The health of Australian Aboriginal and Torres Strait Islander people is very poor, and their access to primary care is inadequate, especially in remote areas.1–3 Prevalence of and mortality from type 2 diabetes (hereafter diabetes) and chronic kidney disease (CKD) are extremely high in remote Aboriginal communities in the Northern Territory.4 Chronic disease is responsible for 80% of the mortality gap between Indigenous and non-Indigenous Australians, with diabetes accounting for 12%.5 For all Indigenous Australians, the self-reported prevalence of diabetes is more than three times, and the incidence of end-stage CKD six times, the non-Indigenous rates.3 In remote Aboriginal communities in the NT, CKD prevalence is up to 25% of the population,4 or 46% of adults.6 Diabetes prevalence is in the order of 13%7 to 16%4 of the population, or up to 29% of adults.6 Both conditions are major contributors to cardiovascular disease, the greatest single contributor to the mortality gap.5

The origins of the chronic disease epidemic in Indigenous populations and, more broadly, the health gap are complex,3,6 and actions addressing both the social determinants of health3,4,7,8 and systematic primary clinical care6,9 are needed. In this study, we focused on the need for systematic clinical care, which is essential to reduce complications and delay the progression of diabetes and CKD.6,9

The rate of avoidable hospitalisations, a key marker of access to and effectiveness of primary care, is highest in remote communities.10 Australian and international evidence shows strong primary care systems result in better health outcomes, lower rates of avoidable hospitalisations, avoidance of dialysis, and significant cost savings.9–13 Many hospitalisations for complications of diabetes and CKD can be avoided through systematic primary care treatment, with significant medical cost savings.10,13–15 However, there are few estimates of the resources required to sustain primary care management of these conditions.

Particular difficulties for remote primary care include isolation, long distances to services, understaffing and a high turnover of clinical staff.16 Remote health care also requires special skills in chronic disease management, acute care, public health and intercultural communication.13,14,16,17

Our study was initiated by an Aboriginal community controlled remote health service because, despite its own perceptions of competent staff and clinical systems, staff still struggled to satisfy existing clinical protocols within given resources. The service received funding primarily from the then federal Office for Aboriginal and Torres Strait Islander Health and the then NT Department of Health and Families. Other sources included Medicare and a small university research grant. The aim of our study was to estimate the resources required by a remote health service to optimally manage diabetes and CKD — with adherence to the local Central Australian Rural Practitioners Association Standard Treatment Manual (CARPA STM) guidelines15 and with full population coverage.

Methods

The study took place between July 2010 and May 2011 in a remote Central Australian community. The methods were adapted from the models of care health service planning approach18 and an earlier NT cost study.10 Using the models of care approach, Segal and colleagues18 began with local best-practice protocols and estimated the staff time required to complete each of the recommended tasks for a given population. The population health status was assessed and the best-practice health care tasks required for that population were defined for each health profession involved. The time required per patient per year for each task was then determined, and the health care staffing resources then calculated for the population. Zhao and colleagues10 used an analogous approach to estimate the total operating costs of a “reasonably efficient” remote Aboriginal health service. Population needs were defined in terms of the CARPA STM protocols.15 The time estimate given in the definition of each linked Medicare Benefits Schedule item was used in quantifying the population’s staffing needs.10

The target population was resident adults (> 18 years of age) with diabetes or CKD. Best practice was defined in terms of the CARPA STM protocols.15 These protocols are used by all NT primary care providers: government clinics and Aboriginal community controlled health services.19 The tasks recommended by the CARPA STM include history taking, health promotion, education, physical examination, biochemical investigations and prescription of medication.15

First, prevalence of diabetes and CKD was estimated using the health service electronic health record, which represents not only patients presenting for diabetes and CKD management but also those identified in community screening. Prevalence at multiple levels of severity was estimated for both conditions. For CKD, levels of severity were stages 1–5 (estimated glomerular filtration rate range, > 90 [stage 1] to < 15 mL/min/1.73 m2 [stage 5]), with early CKD defined as stages 1–3. For diabetes, early was defined as non-insulin-treated and advanced was defined as insulin-treated. This enabled us to calculate, at the community level, the total annual number of diabetes and CKD care tasks recommended by the clinical protocols.

Second, semistructured interviews informed two aspects of the study. Clinicians were asked to estimate the time required for each protocol task, as well as any unremunerated out-of-hours time essential for the chronic disease management program. Clinicians’ descriptions of their role in chronic disease care helped to structure the final staff-funding model and also to identify other barriers to best-practice care.

Third, the daily work and chronic disease consultations undertaken by a cross-section of clinicians were directly observed in a detailed time-and-motion study. We measured the time taken by each clinician for each task defined by the relevant CARPA STM protocol. We then used a combination of these observations and interview data to estimate an average time for each item (such as measuring blood pressure or discussing diet). Supplies were itemised for each protocol and costed using the clinic’s supply orders or representative prices.

Fourth, financial records provided clinicians’ wage rates and administrative fixed costs. The wage rates, together with the estimates of time-per-task and annual community care requirements, were used to calculate the total cost of clinical staffing for primary care of diabetes and CKD.

We considered costs that, while non-clinical, are part of the overall cost footprint of diabetes and CKD care. Using data from direct observation of clinicians’ workdays, we estimated the proportion of total clinical time spent on diabetes and CKD. This proportion was then applied in a top-down fashion to the health service’s non-clinical costs, so that part of the cost of clerical staff and clinic vehicles was attributed to diabetes and CKD. These data collection and cost estimation methods are summarised in the Appendix.

Finally, we compared the estimated 2009–10 expenditure on diabetes and CKD with the projected annual expenditure using our best-practice model, reflecting full protocol compliance. For this, we assessed the level of clinicians’ adherence to the guidelines using the One21seventy health record audit tool, which is widely accepted in Indigenous health services in Australia and is based on the CARPA STM protocols.20 Per capita figures were calculated as total staff hours required for tasks specific to each group (eg, staff hours per patient per week to manage insulin treatment) divided by the number of patients with CKD or diabetes.

We distinguished between costs met out of the health service budget and expenses met directly by the federal and NT governments and other agencies. Examples of the latter are medications provided free to Indigenous patients under s 100 of the National Health Act 1953 (Cwlth), and visiting allied health services. The increased cost of such items in our model of care was separated from any additional funding needed by the health service to provide that model.

For comparison with the study by Zhao et al we adjusted the 2003–04 NT-wide figures for inflation occurring between financial years 2003–04 and 2009–10 (using the Consumer Price Index for health care in Darwin), and only included comparable aspects of our study (eg, insulin treatment was excluded).10,21

Approval was received from the remote community’s health board and the Central Australian Human Research Ethics Committee (ref: 2010.08.07). Written consent was obtained from all individual participants. Verbal and written feedback was provided to the health board at the conclusion of the study.

Results

In this remote community with a population of 542, 519 (96%) were Aboriginal.22 Of the 297 adults, 74 (25%) had diabetes and 86 (29%) had CKD; 45 (15%) had both conditions. Thirty-one adults (10%) had CKD stages 3–5. Of the 74 adults with diabetes, 13 (18%) were prescribed insulin.

The clinic was staffed by four Aboriginal health workers (AHWs), three remote area nurses (RANs), a general practitioner, a chronic disease educator (CDE) and an exercise physiologist. Twelve staff interviews were completed, and 14 workdays and seven clinical consultations were directly observed.

Quarterly chronic disease checks with an AHW or RAN were recommended for most patients with diabetes or CKD. A GP reviewed clinical findings and investigations, prescribed medication where necessary, and oversaw treatment planning. A full-time CDE educated individual patients and groups and managed insulin treatment. Interviewed staff identified education as crucial for patients’ control of their chronic disease. Locating patients in the community and delivering and explaining their medications were also a significant part of clinicians’ work. According to the medical record audit, 75% of all recommended protocol tasks for diabetes management and 79% for CKD were completed in 2009–10. Based on 2009–10 staffing, our model results in 29% of total clinical hours being used for diabetes and CKD care.

The total projected annual primary care cost of clinical management of diabetes and CKD management with full adherence to the protocols for all patients would be $900 792 (Box 1). On average, the annual cost per patient would be $7856, ranging from $4062 (for people with previously diagnosed early CKD without diabetes and without high cardiovascular risk) to $15 241 (for people with stage 5 CKD and advanced diabetes, with a recent diagnosis of either condition) (Box 2). Including only the costs met through the health service-allocated budget, the projected cost to the centre would be $645 313, or $5628 per patient on average, based on estimated total annual direct clinical staff hours specifically for diabetes and CKD of 4226 hours, or 2.37 full-time equivalents. (The difference between the cost to the centre and the total projected annual cost consists of costs met directly by other sources, including the federal and NT governments, rather than through the health service budget.) Expenditure in 2009–10 by the remote health service for diabetes and CKD care was estimated at $446 585, or $3895 per patient (Box 1). The health service would thus require an additional $198 728 (ie, an additional $1733 per patient) for best-practice management of diabetes and CKD. Overall funding received by the health centre in 2009–10 was $3413 per patient.

Interviews with staff identified a number of other barriers to optimal care. The high turnover of RANs necessitated frequent intensive orientation and teaching for new staff. The clinic was also rarely fully staffed. On-call night work, cross-cultural communication and cultural differences can present difficulties for RANs. AHWs may face a conflict of duties and values between the community and the health centre and a heavy responsibility in the role. A high acute caseload and the reticence of many patients to attend checks, for reasons including low health literacy and long waiting times, also hinder adequate management of chronic disease. There is a perceived need to allow more time for clinicians and patients to build relationships and for community-building work.

Discussion

Our study identified a high prevalence of diabetes and CKD in a remote community. As this is the community’s only clinic and the community health screening coverage is high, the clinic-based prevalence approximates population prevalence and is consistent with other remote community studies.4,13

This service is relatively well funded compared with other NT primary care services. Expenditure in 2009–10 was $3413 per capita per annum. The mean per capita figure for NT Government remote clinics for 2011–12 was $2329. This service has a higher than average compliance with the protocols for CKD and diabetes (77%, compared with the territory-wide figure of 73% for clinics participating in the One21Seventy audit). In response to low health literacy and patient mobility, the clinicians engage in very active outreach, health education and opportunistic screening. Most remote communities do not employ a CDE or exercise physiologist.

Despite these positive factors, 2009–10 expenditure was insufficient to provide optimal management by a margin of 44%, or an average of $1733 per patient with diabetes or CKD. Quantitative data were consistent with clinicians’ perceptions at interview that additional staff members were required to work with the CDE and AHWs to adequately meet community needs. Additional staff could increase the crucial quarantining of AHWs’ and RANs’ chronic disease care time from acute care time, possibly contributing to enhanced retention of staff. It would also allow greater allied health coverage, increasing exposure of patients to consistent health messages, and additional informal staff education.

The costs calculated in our study were higher than the inflation-adjusted (2003–04 to 2009–10) NT remote community estimates produced by Zhao et al.10,21 Possible reasons include the conservative estimates by Zhao et al of clinical time needed in remote health services for chronic disease care and staff training, and the higher administrative and salary costs at the studied remote clinic compared with those used in the earlier study.10

Strong primary care systems result in better health outcomes and significant cost savings.9,11–13 There is a strong argument for adequate funding of primary care services like the subject of our study. Our findings also highlight the lack of benchmarks that might indicate appropriate levels of funding to meet community needs and provide cost-effective care.

The strength of this study is its rigour and comprehensiveness, using multiple data sources (qualitative and quantitative). However, the methods are resource intensive and replication at other locations or with other disease groups would be expensive. Other limitations include the fact that costs were kept constant in our modelling. It is likely that unit and, possibly, fixed costs will increase as 100% community coverage and adherence to protocols is approached. It may be that 100% coverage and compliance is uneconomical.

Limitations to generalising these findings to other remote Indigenous health centres are the wide variation in transport costs, the availability of allied health care, and the feasibility of indicated insulin treatment given limited staffing resources. The small sample size also means that caution must be taken in generalising the results.

Nevertheless, this community is not unrepresentative of many remote Indigenous communities, and our study provides the best available evidence about the funding gaps for optimal management of two prevalent chronic diseases in such communities. It documents a significant shortfall even in a relatively well funded and effective primary care service, close to the regional centre. We would expect that the documented shortfall is a conservative estimate. These findings should inform funding bodies in their allocation of health resources for remote Indigenous communities. It may also be of use to this and other remote communities in advocating for their health care needs.

1 Estimated 2009–10 and projected annual costs* for the primary care management of type 2 diabetes and chronic kidney disease in a remote Aboriginal community

 

Annual costs ($)

Category

2009–10

Projected

Remote health centre costs

    

Clinical staff

228 906

340 392

Remote area nurses and Aboriginal health workers

62 011

68 592

General practitioners

38 799

74 439

Chronic disease educators and visiting dietitians

128 096

197 362

Administrative staff

76 383

108 507

Medical supplies

4079

5795

Other operating costs

137 217

190 618

Maintenance

1240

1762

Vehicles

27 758

35 123

Other supplies

1635

2322

Other administrative (including computers, power)

106 584

151 411

Total

446 585

645 313

Direct costs to federal and NT governments†

234 424

255 479

Grand total

681 008

900 792

NT = Northern Territory. * Full coverage and full adherence to protocol. † Includes dental (NT), and optometry, non-vehicle and vehicle capital costs, and medications provided to Indigenous patients under s 100 of the National Health Act 1953 (federal).

2 Total projected annual costs per patient* for the primary care management of type 2 diabetes and chronic kidney disease (CKD) in a remote Aboriginal community, by stage of disease and comorbidity

 

Cost, by severity of CKD ($)

Condition and case type

No CKD or stage 1–3

Stage 4

Stage 5†

CKD without diabetes

      

New cases

4345

4547

5200

Existing cases

     

Without high cardiovascular risk

4062

4175

5042

With high cardiovascular risk

4125

–

–

Non-insulin-treated diabetes

      

New cases

4428

4601

5252

Existing cases

     

Without high cardiovascular risk

4133

4228

5093

With high cardiovascular risk

4196

–

–

Insulin-treated diabetes

      

New cases

14 417

14 590

15 241

Existing cases

     

Without high cardiovascular risk

14 122

14 218

15 083

With high cardiovascular risk

14 185

–

–

* Full coverage and full adherence to protocol. † Dialysis costs excluded.