Non-compliance or rational decision

Cuban AIDS

policy

SiR-Scheper-Hughes’ article (Oct 16, p 965) may tempt other countries to follow the Cuban model. We would like to draw attention to the weaknesses of the strategy. The AIDS campaign run by the Ministry of Public Health in Havana uses as a screening tool a micro-ELISA test for HIV antibody developed in Cuba.1 927 seropositives have been reported among 12 million tested. Since the sensitivity of the Cuban test is 84-6% and its specificity 96-9%,it can be concluded that there are 176 false negatives who have HIV infection but are still in the community, and that there must have been 383 901 false positives. Even if the confirmatory test had a specificity of 99%, there may have been 3877 people labelled incorrectly as seropositive and, perhaps, isolated along with the true positives in sanatoria where promiscuity is common. By now those unfortunate Cubans may have not only lost what freedom they had, but also have acquired HIV infection or tuberculosis. The performance of the Cuban screening tests was secret for a long time. Comparative studies had been done by about 1988 but the results were not published until the collapse of the former Soviet Union, where the studies were done. The Cuban regime sees AIDS as a state security issue and that department’s involvement in the MINSAP AIDS campaign is seen in the blatant assault on human rights of Dr Omar del Pozo Marrero, who, in 1991, wrote an open letter to MINSAP arguing in favour of HIV patients and their rights.3 del Pozo Marrero has been condemned to 15 years’ imprisonment. He is one of Amnesty International’s prisoners of conscience. When an HIV patient is caught trying to escape from one of Cuba’s fourteen HIV sanatoria he or she is sent to jail for "propagating the epidemic". Although AIDS is mostly a heterosexual disease in Cuba,1 it may indeed be true that only one child has died of AIDS in that country. All pregnant women there are tested for HIV infection and those pregnancies found positive are automatically terminated.4 The choice of the woman, the sensitivity and specificity of the tests, and the likelihood of the child being born with HIV disease do not seem important to the Cuban regime-nor are they discussed by Scheper-

Hughes. The Cuban AIDS campaign controls all information, testing, and reporting of results. It conveys the message that all seropositives are identified and segregated.4,5 Cuba’s people are ill-served by this myth and remain ignorant of the presence of a deadly virus in the community.3 MINSAP could not have "seized the epidemiological moment at the very start of the epidemic" because it was 500 000 (not 40 000) "internationalists"6,7 who returned from heavily infected areas, and HIV was prevalent in the Cuban population as far back as 1980, at least 6 years before any quarantine or confinement took place.8 Furthermore, MINSAP does not test any of the half

1

Molinert HT, Galban Garcia E, Rodriguez Cruz R. Prevalence of infection with human immunodeficiency virus in Cuba. PAHO Bull

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Vorobeva MS. Assessment of enzyme immunoassay test systems for HIV antibody detection in international trials. Vaprosv Virulosogii 1990; 35: 248-50. del Pozo Marrero O. AIDS in Cuba. Lancet 1992; 340: 374. Perez-Stable EJ. Cuba’s response to HIV. Am J Publ Hlth 1991; 81: 563-67. Moas C, Paya R, Gordon A. AIDS policy and HIV epidemic in Cuba. Proceeding of International Conference on AIDS, 1990; 2: FD64. Diaz-Briquets S. Cuban internationalism in Subsaharan Africa. Pittsburgh: Duquesne University Press, 1989: 48-77. Bureau of Hygiene and Tropical Medicine. Prostitution in Cuba. Le Monde (Paris) May 17, 1992: 19. de Medina M, Fletcher M, Valledor M, et al. Serological evidence for HIV infection in Cuban immigrants. Lancet 1987; ii: 166.

1989; 23:

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SIR-There is a long line of intellectuals from western democratic societies returning from brief officially guided tours of Stalinist facilities to write about them as model social arrangements. Having heard Scheper-Hughes extol the Cuban HIV seropositives’ concentration camps (and having read what is substantially the same article as her one in the Oct 16 Lancet in the American Anthropological Association’s Anthropology Newsletter), I knew that she was in that line, although notably exceeding her predecessors’ zeal in praising the gulags, not just the model villages or clinics in what is represented as a wisely administered socialist society. Given the well-known history of Cuban concentration camps for homosexual men and routine harassment by neighbourhood organisations 2,3 it is startling to read of Cuba as a "non-discriminatory state", and that gays are "especially protected" there. Perhaps if the contrast is Myanmar (Burma), where returning women who test HIV positive are shot, or if the Cuban concentration camps are compared with Nazi death camps, gay Cubans are "especially protected". As one of the many gay men in San Francisco who were infected with HIV before the first case cluster of AIDS was identified in 1981,find Scheper-Hughes’ assertion that in the "small number of devastated neighbourhoods, especially in Manhattan and San Francisco, a more aggressive public health response at the very start of the epidemic might have saved countless lives" offensive nonsense. Half the sexually active San Francisco gay men were infected with HIV before the virus was identified.4 Quarantining (or executing) us in the mid1980s, when tests became available, was impracticable. Social anthropologists are notorious for neglecting history, but when a medical journal publicises views about public policy it should insist on a minimum of historical grounding that ScheperHughes fails to provide.

Stephen O Murray 1360 De Haro, San Francisco, CA 94107, USA

1

million tourists who visit the islands every year some of whom surely resort to one or more of "Fidel’s comrades of the 2

night".6 Discussion of the rights of HIV patients and of populations infected but at risk is welcome, but to propose that Cuba’s AIDS strategy has achieved control of HIV infection in that country belongs in the world of fiction. It is unfortunate that the reality is not accessible to all, but HIV-infected individuals in Cuba are not as free to come in and out of Cuba as Scheper-Hughes is. Public health endeavours should begin and end with a respect for human rights and must not lose sight of the dignity of all the men, women, and children they purport to assist and protect.

3

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Antonio Maria de Gordon, Shawn K Centers, L P Diovaldes Clinical Studies Group, Finlay FL 33012, USA

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Society Inc, 344 West 65th Street # 201, Hialeah,

6267.

Hollander P. Political pilgrims: travels of western intellectuals to the Soviet Union, China, and Cuba, 1928-1978. New York: Oxford University Press, 1981. Salas L. Social control and deviance in Cuba. New York: Praeger, 1979: 296-329. Arenas R. Antes que anochezca (before night falls). Barcelona:

Tusquets, 4

1992.

Hessoll NA, et al. The natural history of HIV-infection in a cohort of homosexual and bisexual men. Paper presented at International AIDS

Congress (Washington, DC, 1987).

Non-compliance or rational decision SIR—Wright (Oct 9, p 909) reviews the frequency and associated factors of non-compliance among patients, but she does not consider the most important question-does it always matter whether patients follow our advice? We implicitly assume that patients who comply with our advice have better

health than those who do not. We have many effective and proven treatments, but may use others that are unproven or even disproven. In every generation, doctors have acknowledged that their armamentarium is incomplete, but they have believed, often on inadequate evidence, that the treatments they use have greater benefits than costs for the patient. The history of medicine is littered with discarded methods and I doubt that we have now reached the golden age where all treatments are both rational and effective. A patient with insulin-dependent diabetes does not need persuasion to maintain insulin injections; the result of non-compliance is prompt, obvious, and unpleasant. There is much less compliance with diet as transgression increases pleasure without obvious ill-effects. We now know that the high fat, low sugar diet recommended for many years may have done more harm than good, so perhaps the patient’s choice was unknowingly rational. The present treatment of diabetes is now perhaps more rational and beneficial, but we still have irrationalities in management of many other conditions. Many patients come to my hospital clinic to tell me about treatments given by other doctors. These patients have thought the treatments worse than the disease and have stopped them, but they feel guilty and want another opinion. For example, despite sound evidence for lack of benefit, many children are given five or ten day courses of antibiotics for common viral infections. Some mothers demand such treatment, but many others stop the antibiotic after a day or so when the child is better. This is noncompliance, but who is correct? The evidence is that neither is correct, but the mother is less wrong. Children who develop a wheeze with their infections are labelled asthmatic. Many are given nebulised salbutamol and told to continue on this for days even after the wheeze has gone; some are given courses of oral steroids, complete with unnecessary tailing off; some are put on to regular sodium cromoglycate or inhaled steroids for indefinite periods after a single and mild bout of wheezing. Mothers see their healthy child, stop treatment, but then feel guilty. Some seek another medical opinion, others go to practitioners of alternative medicine whose management may be more expensive and equally unproven, but is also less harmful than potent drugs. We can all think of illnesses with difficulties similar to these. I have seen children with common childhood infections and so-called asthma recover just as quickly with shorter or symptomatic treatment as with the present polypharmacy. Younger graduates have never seen the natural history of these illnesses and believe that aggressive management is necessary and beneficial. Many mothers know better. The "compliance research enterprise" has run out of steam because it has been asking the wrong questions. The first and most important question is, "does the treatment we recommend improve the patient’s health and longevity?" The second is, "is the cost of these gains acceptable to the patient?" When these questions have been answered, we can concentrate on what is left of the compliance debate. We all have areas of ignorance and are at times illogical. If the patient so judges us, then non-compliance is a rational decision. Alan

Dugdale

Department of Child Health, University of Queensland, St Lucia Q 4067, Australia

SIR-Wright rightly emphasises the need to know more about non-compliance and standardisation of the methods of study and measurement. We draw attention to the impact of non-compliance on outcome of treatment and of clinical trials. Horn and co-workers1,2 measured compliance and the effects of non-compliance on asthma morbidity in general practices. The high rate of poor compliance and its association with increased morbidity draw attention to the need for caution, not only

clinical setting but also within clinical trials. If no of compliance is taken, an effective drug may be rejected as no better than placebo, or the optimum dose may be overestimated with a potential increase in drug toxicity.3 Coucher and Cochrane reviewed a sample of 208 articles on clinical trials from 340 published between 1988 and 1990 by The Lancet and the British Medical Journal. Each trial was classified into one of three categories, as used by Soutter and Kennedy.4 (i) Compliance assessment possible and necessary: The methods considered as valid were biological fluid assays or specific measurements of specific pharmacodynamic effects, run-in trial design, pill counts, and close supervision.

within

a

account

(ii) compliance assessment unnecessary: This category applied generally if the drug was being administered by a route over which the patient had no control-for example, intravenously. (iii) compliance assessment impossible: For example, retrospective studies of drugs given irregularly dependent on symptom onset. Compliance was assessed by valid methods in only 37% of the trials in the survey: BMJ

Category

Lancet

Both

Numbers of trials (%) shown.

Although the number has increased from 19 % in 1974,4 there is still room for improvement. Inadequate attention to compliance with therapy we believe is of equal or even greater importance within clinical trials. C M Bosley, John Coucher, G M Cochrane Department of Thoracic Medicine, Guy’s Hospital, London SE1 9RT, UK Horn CR, Essex E, Hill P, Cochrane GM. Does urinary salbutamol reflect compliance with aerosol regimen in patients with asthma? Resp Med 1989; 83: 15-18. 2 Horn CR, Clark TJH, Cochrane GM. Compliance with inhaled therapy and morbidity from asthma. Resp Med 1990; 84: 67-70. 3 Goldsmith CH. The effect of compliance distribution on therapeutic trials. In: Haynes RB, Taylor DW, Sackett DL, eds. Compliance in health care. Baltimore: John Hopkins University Press, 1979. 4 Soutter BR, Kennedy MC. Patient compliance in drug trials: usage and methods. Aust NZJ Med 1974; 4: 360-64. 1

SiR-Identification of the patients who are all too ready to give up rational responsibility for their own health is as important as detection of the backsliders. However, excessive compliance, or docility, can also be harmful. There are, for example, diabetics who still weigh their bread, without regard to changing activity, after 20 years on insulin. One young woman who had been advised to restrict intake of sugary food and fruit, to avoid mild, functional hypoglycaemia, steadfastly refused all fruit for 2 years, having misinterpreted the instructions as implying a serious fruit allergy. When I was a medical registrar, a woman was wheeled on a trolley into outpatients one day, snoring loudly. Her daughter announced that the tablets that had been prescribed two weeks before did not suit her, but that she had continued to take them according to instructions. On checking the prescription I found that my chief had prescribed a hypnotic three times daily instead of once nightly. The other view of Matilda’s aunt is the story of Epaminondas, the child who followed all instructions to the letter, however inappropriate they might be. Education of patients about their condition may, therefore, help those with a

tendency to over-dependence, and limit the frequency of rigid, potentially dangerous, treatment rituals. Layinka

M Swinburne

16 Foxhill Crescent, Leeds LS16 5PD, UK

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