Treating AIDS: the economic issues

Treating AIDS: the economic issues

Health Policy, Elsevier 10 (1988) 1-19 1 HPE 00231 Treating AIDS: the economic Michael Drummond and Linda Davies Health Services Management Bi...

1MB Sizes 28 Downloads 76 Views

Health Policy, Elsevier

10 (1988) 1-19

1

HPE 00231

Treating

AIDS: the economic

Michael Drummond

and Linda Davies

Health Services Management Birmingham, U.K. Accepted

17 April

issues

Centre,

University

of Birmingham,

1988

Summary It is now clear that AIDS is not only a disease of great social concern, but also has major resource implications. A number of analyses of the costs of caring for AIDS sufferers have already been published, relating mainly to the U.S.A. These present a confusing picture to the policy maker as the estimates vary greatly. In addition, treatment patterns are changing rapidly, with consequent impact on costs. Therefore this paper reviews the evidence on the costs of treating AIDS, comparing European data with those from the U.S.A. It also investigates the reasons for variations in cost estimates, the likely impact of changing treatment patterns and the relative ‘value for money’ from treatment of AIDS, compared with other health care interventions. Economic evaluation;

Cost-effectiveness

analysis; AIDS

1. Introduction It is now clear that AIDS is not only a disease of great social concern, it also has major resource implications. In many countries additional resources have been made available both for research and for treatment provision. The advent of new drug therapies, of which zidovudine (Retrovir) is the first, has further highlighted the concerns about costs and the need to ensure that resources are being used in the most cost-effective way. A number of analyses of the costs of caring for AIDS sufferers have already been published. These present a confusing picture as the cost estimates vary greatly. In addition the published data relate mainly to the U.S.A., and to date there has been no systematic review of European experience. Address for correspondence:

40 Edgbaston

Park Road,

016%8510/88/$03.50@

Professor Birmingham

1988 Elsevier

M.F. Drummond. BlS 2RT, U.K. Science

Publishers

Ph.D.,

Health

Services

B.V. (Biomedical

Management

Division)

Centre,

2

Treatment patterns for people with AIDS, ARC or who are HIV-positive are changing rapidly, with increased emphasis on community care. Also there is evidence that clinicians are continually broadening the categories of patient they consider eligible for drug therapy. It is not yet clear what impact community care and drug therapy will have on treatment cost. As the total economic burden of treatment for AIDS, ARC or HIV-positive patients grows, there is concern that expenditure will be diverted from other priority areas. Therefore there is a need to investigate the relative value for money from treating AIDS compared to other uses of health services resources. This paper considers the following issues: Why ho the estimates of the costs of treating AIDS vary so widely? What is currently known about the costs of treating AIDS in European countries? (iii) How are treatment patterns changing and what impact will these changes have on costs? What is known about the relative value for money from treating AIDS com(iv) pared with other uses of health service resources? (v) What economic analyses of the costs and effectiveness of treating AIDS, ARC and HIV-positive patients should be undertaken in the future?

ii?)

2. Variations

in the costs of treating AIDS

There have now been a number of studies of the costs of treating people who have AIDS, originating mainly from the U.S.A. The lifetime treatment costs reported in the U.S. studies range from $27,571 [l] to $147,000 [2]. Johnson et al. [3] reported lifetime costs in the U.K. of f6838. Such wide variations were confirmed in a comprehensive review of the U.S. literature undertaken by the Office of Technology Assessment (OTA) of the U.S. Congress [4]. There are three main reasons for variations in the estimates of costs: differences in study methodology, differences in type of patient and differences in study setting. These are discussed in turn below. 2.1. Differences

in study methodology

There are a number of key differences in study methodology likely to affect cost estimates. First, studies have differed in the range of costs included, the majority considering inpatient hospital costs only. The review by OTA [4] further points out that some of the U.S. studies do not necessarily include all the hospital costs, if they consider only charges to particular third party payers. Of course there are other important treatment costs, such as those for outpatient (ambulatory) care, care in the community by general practitioners or other health workers, counselling and patients’ own out-of-pocket expenses. Three of the U.S. studies considered outpatient care and found lifetime costs of between $3000 and $5310 [5-71. Johnson et al. [3] estimated outpatient costs at $530 for the U.K. The concentra-

3 Table 1 Treatment

costs for AIDS patients (1994 prices)

Study

Lifetime cost per person (as reported in Studvl

Average length of survival (months)

Cost per person oer vear

Hardy et al. [2] Kizer et al. [7] Scitovsky et al. [l] Scitovsky and Rice [5] Seage et al. 161

$147,000 $59,000 $27,571 _

13 18 7.5 _

$135,690 $39.330 $44,110 $31,890 $46,500

$50,380

13

tion on hospital inpatient costs has led to an underestimation of the cost per person of around 10% in the past. However, the omitted categories of cost are likely to become much more important in the future as treatment patterns change and should therefore be included. (This point is discussed further in Section 4 below.) Secondly, studies have differed in the method of reporting costs. Some reported the lifetime costs of treating people with AIDS, others the estimated annual costs for treatment. In the latter case, the studies usually included not only patients alive for the whole year but also those who died during the year and those recently diagnosed as having AIDS. Costs were then adjusted to calculate the cost per person per year, by dividing the cost per patient by the number of months each person was in the study and then multiplying by 12. In Table 1 treatment costs in the U.S.A. are compared by converting lifetime costs to cost per person per year, where the study itself did not do so. Further methodological differences between the studies concerned the criteria used to define AIDS and the extent to which retrospective cost analysis was employed. These differences affect both lifetime costs and the cost per person per year. OTA [4] report that around half the U.S. studies used the Centers for Disease Control definition of AIDS. This definition included people who have antibodies to HIV, and a deficiency of T helper cells and certain opportunistic infections. Other studies used a mixture of definitions, such as whether reports of AIDS were made to health departments, or whether treatment was given in AIDS wards. The majority of studies, however, considered only the costs incurred following a confirmed AIDS diagnosis. However, a few also checked the patient’s record to see whether there were any costs incurred before diagnosis which could reasonably be attributed to AIDS [7]. The view analysts have taken on this point clearly affects both lifetime treatment costs and estimates of survival. It also affects estimates of cost per person per year, since a study including retrospective analysis is likely to include a greater proportion of months with low intensity of resource use. The U.S. studies reviewed here estimated the costs of treating AIDS patients and did not include people with ARC or who were HIV-positive.

4

2.2. Differences

in type of patient

One key difference in type of patient has already been touched on: namely, at what stage in the progression of the disease does the patient enter the study? Although there are a number of possible explanations for the differences in survival given in Table 1, a major factor is clearly that in some studies the patients were sicker and nearer the end stage of their disease. All the published studies except one [8] have confined their attention to AIDS patients. In the single case where the costs of AIDS-related-complex (ARC) patients were investigated, their costs were similar to those of AIDS patients. However, OTA [4] point out that this study gave only a partial picture, since the data pertained only to the claims paid by the insurance companies surveyed and excluded the costs paid by patients and government programmes. Another important difference in type of patient is between those AIDS suffers who are homosexual/bisexual and those that are intravenous drug abusers. It is often claimed that homosexual and bisexual men have lower hospital stays, because of their superior social support network. Whilst it is true that hospital stays and costs are lower in San Francisco (where most patients are homosexual) than in New York (where 30% are iv. drug abusers), OTA [4] point out that within New York no significant differences were found in lengths of stay or hospital costs between i.v. drug abusers and other AIDS patients. Rather it is thought that Kaposi’s sarcoma, which is more common among male homosexual AIDS patients, is less likely to require hospitalization than other opportunistic infections. Table 2 presents comparative data on the percentage of patients in each study suffering from Kaposi’s sarcoma, average length of survival and average number of days hospitalization. Whilst the data may explain some of the differences in costs between the study by Hardy et al. [2] and the other U.S. studies, they do not offer a complete explanation. For example, 45% of the patients in Johnson et al.‘s study [3] had Kaposi’s sarcoma, but they also had a relatively high rate of hospitalization. This may suggest that the Johnson et al. study contained a high proportion of sicker patients.

Table 2 Type of illness, length of survival and amount of hospitalization Study

Percentage of patients Kaposi’s sarcoma

Hardy et al. [2] Johnson et al. [3] Kizer et al. [7] Scitovsky et al. [l] Scitovsky and Rice [5] Seage et al. [6]

9 45 N/A 13.2 19 38

with

Length of surviva1 (months)

Average number of days hospitalization (Equivalent annual rate in parentheses)

13 5.6 18 7.5 N/A 13

168 (155.1) 50 (120) 89.6 (59.7) 34.7 (55.5) 34 (N/A) 61.9 (57.1)

5

2.3. Difference

in study setting

One major difference in study setting, that of location, has already been mentioned. The majority of published studies to date have been from the U.S.A., except that by Johnson et al. [3] and a French study by Debeaupuis and Tcheriatchoukine [9]. The European evidence on the costs of treating AIDS, and its comparison with the U.S. cost data, will be considered more fully in Section 3 below. However, it is thought that even within the U.S.A. location has had a major influence on cost. An obvious example is the greater availability of community services in San Francisco, thereby facilitating earlier hospital discharge. There may be other differences in service availability between locations likely to affect costs. For example, lack of wards or units dedicated to the treatment of people with AIDS may lead to a higher proportion of AIDS patients being treated on intensive care wards. Lack of good outpatient or day-care facilities may mean that patients require admission for blood transfusions or other procedures which could otherwise be performed on an ambulatory care basis. The other main difference in study setting is that of date. Although the majority of published studies concerned patients diagnosed in 1984, treatment patterns are changing so rapidly that even over a period of a few months, resource use, and hence costs, could change. In particular, OTA [4] point out that it probably took longer to diagnose and determine the treatment of the early AIDS patients that provided the basis for Hardy et al.‘s [2] estimates. Some of the current economic issues arising from changing treatment patterns are discussed in Section 4 below.

3. European estimates

of the costs of treating AIDS

So far very little has been published on the costs of treating AIDS outside the U.S.A. While the American data give some useful pointers to European costs, there may be critical differences between countries likely to affect results. For example, the availability of inpatient and community care facilities, the relative costs of health care compared with other commodities and physician behaviour when confronted with a terminal disease. This section presents some data from Europe, based partly on published material and partly on information obtained from physicians and hospitals involved in treating AIDS patients. The cost data do not cover people who are HIV-positive or have ARC. 3.1. France The most comprehensive study of the costs of treating AIDS in France undertaken to date is that by Debeaupuis and Tcheriatchoukine [9]. The objective of the study was to determine the total cost to Assistance Publique de Paris of treating people with AIDS, as well as the average cost per patient treated. A survey showed that the days of hospitalization of AIDS patients in 1986 were mainly spent in general medicine beds (90%), with a minority spent in intensive care (6%) and

6

specialized medicine (4%). The 1986 daily reimbursement rates for these three categories of care were 1379 Fr, 4470 Fr and 1970 Fr, respectively. The study examined whether the real costs of caring for AIDS patients were significantly higher than the daily reimbursement level for general medicine. It was possible to compare the actual direct, medical and ward expenses of AIDS patients with the average daily reimbursement levels. However, a comparison of expenditure on personnel was not possible. To the extent that AIDS patients required more medical, nursing and laboratory personnel than the average, the costs reported by Debeaupuis and Tcheriatchoukine represent an underestimate. Based on the 10 hospital departments in Paris most concerned with AIDS (75% of all hospital days for AIDS patients in Paris), the study estimated the direct costs in each department attributable to AIDS patients. By dividing this amount by the number of days of stay of AIDS patients, the extra daily cost compared with an average non-AIDS disease could be calculated for each department. A random sample of 10 hospitalizations was taken from each of the 10 departments as a basis for the analysis. The items examined were ward equipment, cleaning products, linen and laundry, medical equipment, dressings, drugs, blood products, medical acts (except personnel) and medical transportation. The hospitals were asked to give their own estimates of additional expenditure under these headings and these were compared with those derived from the sample of casenotes. The results from the hospitals showed that the additional costs varied from place to place, with the average estimate of the extra cost being 376 Fr per day (or 93% higher than a non-AIDS patient). However, it was felt that the hospitals’ own analysis was not detailed enough and based on too small a sample. The more detailed analysis based on the 100 hospitalizations selected at random showed that the extra daily cost was 180 Fr per day (or 44% higher than for non-AIDS patients). The French study contained a detailed analysis of the running (or revenue) costs of treating AIDS patients in the hospital. As well as omitting personnel costs (mentioned earlier), the study did not consider outpatient costs, costs of home/community care or patient’s out-of-pocket expenses. Debeaupuis et al. [9] suggested that an AIDS patient represents a global cost of 1800 Fr a day, assuming an extra workload on nursing and medico-technical staff of two hours per patient per day. (This was costed at 200 Fr.) Furthermore, they argued that an AIDS patient could expect to experience a maximum of 90 days hospitalization, giving a maximum total hospital inpatient cost of 162,000 Fr. 3.2. Federal Republic of Germany To date no costing studies for Germany have been published, so it was necessary to solicit data from institutions active in the treatment of people with AIDS. Three institutions were visited: the Auguste-Viktoria-Krankenhaus (Berlin), the Universitats Poliklinik (Munich) and the Medizinische Hochschule Poliklinik (Hannover). One of the distinctive features of the German health care system is the strict

7

separation of inpatient and outpatient care. That is, office-based general practitioners and specialists provide all ambulatory care and have no permission to treat patients inside the hospital. Hospitals do not have outpatient departments which can be attended by patients and admission has to be via a referral or as an emergency. Patients are then treated on a strict inpatient basis. Exceptions to this rule are the University hospitals, which do have outpatient departments. Therefore, up until now most care for AIDS patients has been provided by hospitals felt to have the necessary facilities. These have tended to be University hospitals and their associated polyclinics. However, the organization of the health care system in the F.R.G. tends to lead to unnecessary hospitalization, resulting in high costs and separation of patients from their social and working environment. The Auguste-Viktoria Krankenhaus (AVK) in Berlin had treated about 70 patients up to June 1987, of which 46 had full-blown AIDS and 12 suffered from ARC or lymphadenopathy. The final 12 patients were diagnosed as HIV-positive. The patients were treated in the infectious diseases unit, which comprised two 36 bed wards. Local clinical staff estimated that the average survival time for patients in care was about 1.5 years. On average 19 patients were being treated at the time of data collection, and the average length of stay was approximately 20 days. A request has been made for extra staff to cope with the additional workload resulting from HIV-infected patients. This, combined with data on the extra costs of tests, infusions and drugs based on a sample of 10 patients, suggested an additional cost of 395 DM, over and above the per diem reimbursement of 325 DM. In Munich the majority of homosexual HIV-positive patients have been treated at the University Polyclinic, which provides both outpatient and inpatient treatment. At the present time 650 HIV-positive patients are registered with the polyclinic, the vast majority of whom are cared for on an outpatient basis. Of the current caseload, 5% of the people have full-blown AIDS, 75% have ARClymphadenopathy syndrome and the remaining 20% of patients are HIV-positive without symptoms. The clinic likes to keep the number of AIDS patients hospitalized at any one time to 10, around 15% of their total bed capacity. Most patients have only short inpatient stays, although some with no alternative accommodation have had stays of up to 6 weeks. The costs of treating AIDS in the clinic were calculated by examining the resources devoted to 3 patients already dead. The average number of inpatient days per person for these 3 patients was 78 days, the average survival being 200 days from diagnosis to death. The average cost per inpatient day was 340 DM (comprising 180 DM per day for in-house costs, plus 91 DM per day for outside services and 69 DM per day for medication). The average lifetime cost of inpatient care was therefore 26,520 DM per person. In addition, the average lifetime cost per person of outpatient care was estimated at 578 DM. The total lifetime cost was therefore approximately 27,000 DM per person, giving an average cost per person per year of 49,275 DM, or $22,919. In Hannover no costs were readily available and therefore further analysis would be required to provide them.

8 3.3. United

Kingdom

So far the only published costing study in the U.K. is that by Johnson et al. [3]. They considered 33 cases of people with AIDS (as defined by the Centers for Disease Control) referred to inner London hospitals in one health district. Twentynine of the 33 patients received inpatient care, with a total of 67 admissions of an average length of 10 days. Sixteen of the 33 patients had died by the time the study results were published and their lifetime costs could therefore be calculated. These patients were alive for an average of 22.4 weeks during which they occupied a mean of 50 bed days and had an average of 10.2 outpatient visits each. Using average costs of an inpatient day and outpatient visit for London teaching hospitals, the average lifetime cost was calculated at f6838. This gives an average cost per patient per year of f15,874. Johnson et al. [3] pointed out that this cost greatly underestimates the cost of treating AIDS, as it does not include the capital and revenue costs of extra treatment provision. The estimated additional costs incurred by the district in providing services for patients with AIDS and infection with HIV for 1986-87 were &674,500, of which f317,500 was for providing inpatient and outpatient care. In addition, as suggested earlier, since the study considered only the first 16 of the 33 patients to die, it is likely to be biased towards those patients having the lowest lifetime cost. Another paper from the same health district [lo], reported median lengths of survival of 21.2 months in the U.K. for patients with Kaposi’s sarcoma and 12.5 months for patients with Pneumocystis carinii pneumonia. (The equivalent figures for the U.S.A. were quoted as 31 months and 9 months, respectively.) Apart from the study by Johnson et al. [3], there have been other reports of the costs of treating AIDS patients in the U.K. For example, it was reported by the Minister for Health in the House of Lords that the average total inpatient cost of caring for a person with AIDS from diagnosis to death is around f17,600. This estimate was based on an as yet unpublished study carried out in two London health districts [ll]. Rees selected all patients diagnosed during 1984 and followed them through to death, which meant that this sample was not biased towards short-surviving patients. His cost estimate, of f200 per day (1986/87 prices), was based on the actual costs of AIDS patients, rather than the lower hospital-wide cost estimate used by Johnson et al. One health district, Paddington and North Kensington, has calculated the direct ward costs of a 12 bedded unit for the treatment of AIDS sufferers [12]. These suggest a total cost per inpatient day of f181. This is around 30% higher than the average cost of London teaching hospitals and is itself an underestimate, since it does not include the costs that AIDS patients incur on other hospital clinical departments, such as pathology. 3.4. Cross-national

comparisons

of treatment

costs

One of the aims of this study was to assemble European evidence on the costs of treating AIDS to compare and contrast with that from the U.S.A. Cost data

9 Table 3 European data on the costs of treating Country

France Debeaupuis

Cost (as reported

et al. [9]

Germany AVK (Berlin) (1987) Universitlts Poliklinik

United Kingdom Johnson et al. [3] Minister of Health * Converted h Assuming c Assuming d Assuming

AIDS

(Munich)

(1987)

[23]

in the study)

Cost per person per vear ($ eauivalent)”

1800 Fr per day (max. 90 days)

$26,300b

720 DM per day 340.16 DM per day (plus outpatient costs)

$26,790’ $22,919

56838 (lifetime cost) 217,600 (lifetime cost)

$31,186 f34,5776

using purchasing power parities. the maximum 90 days hospitalization 4 inpatient spells of 20 days each. an average survival time of 1.0 years.

have been obtained from three countries, as shown in Table 3. Conversions to U.S. dollars have been made using purchasing power parities [13]. The purchasing power parity (PPP) is the rate of currency conversion which ensures that the price level in each country, when expressed in dollars, is the same as that in every other country. The advantage of PPPs over conventional exchange rates is that they reflect the real price levels and purchasing power of the currencies converted. It can be seen from Table 3 that the European cost estimates cover a range similar to that of those from the U.S. given in Table 1. However, given the small number of studies and the different methodologies employed, it is difficult to draw any firm conclusions from the data. For example, some studies assess the resource use of a series of patients from diagnosis to death, others assume that a given number of days hospitalization will be required. Some studies include outpatient costs, others do not. Until there is a greater standardization in the methodology of economic studies, it will not be easy to assess the extent to which differences in setting or treatment patterns influence costs.

4. Changes in treatment

patterns

With increasing knowledge and experience of the nature of AIDS, the existing methods of treatment are being modified, and new patterns of care developed. Changes in the patterns of treatment have a potential impact on both the costs and quality of care, if not the progression of the disease. Changes in the care or treatment provided, and the possible economic consequences of these, are given under the following headings:

10

- changes in the location of care;

- changes in drug therapy; - changes in the duration of treatment

and/or care.

4.1. Change in the location of care There are two areas of change which can be identified under this heading changes of location within hospitals, and substitution of hospital care by community based services. 4.1.1. Changes within

the hospital

Scitovsky and Rice [5] note anecdotal evidence which suggests that AIDS patients are now receiving less care in intensive care units than in the early days of the AIDS epidemic. This may be due to the fact that AIDS patients now tend to be cared for in specialist wards (according to the nature of the opportunistic infection) or in specialist AIDS units. Given the high cost of intensive care units, this move has probably led to a decrease in the cost per person treated. There may also be some benefit for the patient in this move if, as has been stated, such intensive care merely prolongs dying rather than life. A second aspect of change is the creation of specialist AIDS units. The arguments for such units are: - that the resources required can be streamlined, and a group of specialist staff trained to deal with AIDS patients; - that segregation helps to allay the fears of staff and public of being infected with HIV. Against this, the use of specialist AIDS units may serve to increase the sense of isolation and stress of both AIDS patients and the staff responsible for their care. Adler [lo] argues that isolation units are in any case unnecessary. The effect of specialist units on both the costs and benefits of care is unclear and open to debate in the absence of clear evidence one way or the other. A third aspect of change within the hospital sector is the transfer of some care to outpatients. Green et al. [14] note that outpatient care is being substituted for inpatient care, including care for people with Pneumocystis carinii pneumonia. Use of outpatient visits rather than inpatient stays for certain procedures would reduce costs considerably, if patients do not then require other forms of nursing care in other locations. Even if additional care outside the hospital was required, costs may still be lower. The advantages of outpatient rather than inpatient care to the AIDS patients may be to maintain some sense of independence and perhaps prolong their ability to carry on working, or normal daily activities. A further change in use of hospital resources would be to transfer patients from inpatient care for treatment, monitoring, etc. to hospital day centres. St. Stephen’s Hospital in London plans to open a new day centre with outpatient clinic and day case beds next year [15]. The extent to which this would decrease costs would partly depend on whether day centres could be developed using existing under-used facilities, or whether they would require additional resources.

11

4.1.2. Substitution

of hospital care by community

based services

Another alternative would be to substitute some hospital care by community based services. These could include a combination of some or all of the following: - day care, either in the home, at a day care centre (non-hospital) or hospital day care centre; - home help services; - nursing and medical cover; - diagnostic tests, monitoring and outpatient visits for blood transfusions for people with severe anaemia, etc.; - terminal care, either in the patient’s own home, sheltered housing, hospice or, if appropriate, hospital; - adequate housing. The community-based services could be funded and/or organised by some combination of voluntary groups or charities, local authorities or the health service. The arguments in favour of community based services are: - that they are more appropriate to patient’s needs, since they imply care and support for the patient rather than predominantly medical treatment leading to cure; - that community-based services are cheaper than hospital inpatient services; - that the use of community services would relieve pressure on acute hospital beds. This could either allow existing facilities to be used for other patients, delay the building of new facilities or allow the closure of facilities. On the other hand it could be argued that: - community care will be seen as a cheap option and therefore under-resourced, leading to inadequate care; - the costs of community based services will increase as pressure on voluntary groups and charities to provide services increases; - some hospital inpatient care will still have to be provided, and it may be less costly in the long run to centralise services in specialist units; - some AIDS patients remain in hospital because of inadequate accommodation due to financial pressures or discrimination. Providing housing for these people will increase the costs of community care; - community-based services are not less costly than hospital-based services. There is insufficient evidence for or against community-based services for AIDS patients at present. Some studies of hospice or home care for patients in the terminal phases of cancer suggest that such care is cheaper, and of greater benefit to the patient [16]. However, it does not appear that the programmes studied have provided the range of services which are required by AIDS patients over a substantial period of time. In addition they have included elements of voluntary and/or family support which may not be available to AIDS patients. In the U.K., community-based services for people with mental handicap have been of similar or greater cost than hospital care, although generally of higher quality. The main difference is in who bears the costs [17].

12

4.1.3. Examples of community San Francisco (U.S.A.).

care for AIDS patients

Scitovsky et al. [l] note that the gay community in San Francisco have helped to organise community-based care and support services, which may have led to lower use of hospital inpatient care (particularly intensive care) and thus lower costs. Arno [18] estimates that the cost of community care in San Francisco is $4401 per person, and that the average cost per day for patients served by HOSPICE (a non-profit corporation providing care for terminally ill patients and their families) was $94 per person compared to an average hospital cost of around $800 per day. However, it is not clear whether the community care programme includes all the services required or whether some hospital costs should be added to the figure of $4401. Additionally, the San Francisco model relies heavily on volunteer and charity groups who may not be available or able to provide services in other areas. For example, the San Francisco AIDS Foundation provides education and information; the Shanti Project provides counselling services and a housing programme and HOSPICE provides home health and hospice care for AIDS patients. Arno [18] suggests that the financial cost of community care programmes in San Francisco is lower because of the use of volunteer groups and unpaid labour, but that the actual resource burden may only have been shifted from the health sector to the voluntary sector. (One should not assume that volunteer time has a zero opportunity cost. It may be diverted from other worthwhile activities.) Burda and Powils [19] estimate that the daily cost of home-care in San Francisco is $100, and the daily cost at a long-term care facility is $300 a day, compared to $700 a day at hospital. Again, they do not state what services are provided in the home care setting, or for how long. Berlin (F. R. G.).

In the county of Berlin, there has been a general move to create a network of community clinics and home nursing for care of acute illness and chronic disease in the community [20]. The intention was that this would alleviate pressure on the costly inpatient sector. The community clinics were to combine the following services, drawing on resources provided by voluntary bodies: - home help; - home prepared meals and meals on wheels; - household economy service; - family care; - help for the handicapped; - face to face consultation; - neighbourhood or voluntary aid; - advice. It has been suggested that care for AIDS patients should link into the network of community clinics (56 in Berlin in 1987), and that nurse staffing levels in those clinics already caring for AIDS patients should be increased (12 clinics). The additional nurses would take over the organizational tasks that allow care to be given

13

at home, for example: - contact with family doctors; - medical care; - relatives, friends and neighbours to assist in care; - daily life; - contact with self help groups; - maintenance of contacts with the hospital. The nurse would act as a keyworker. Also required would be: residential accommodation where AIDS/HIV patients can live independently (8-10 places), central information services and a mobile training team consisting of a doctor, hospital nurse, psychologist and representative of Berlin AIDS group. The team would undertake on site training in the community clinics [21]. Paddington and North Kensington DHA (U.K.).

Paddington and North Kensington has costed out a theoretical package of community-based services for AIDS patients [22]. The package is based on the assumption that AIDS patients would have an average survival of one year and would receive: - 4 weeks inpatient care; - 11 months’ treatment at home to include: ?? 4 months’ day care ?? home help - one hour per day for 4 months, and 3 hours per day for 6 months (7 days a week) ?? acute district nursing service cover ?? night sitter for 3 weeks ?? 4 home visits from occupational therapist ?? 2 home visits from senior clinical psychologist ?? 3 weeks round the clock attendance from a staff nurse - blood transfusions; - drug therapy; - equipment. The package would cost approximately f21,800 per person, assuming a survival time of 12 months, and excluding the cost of blood transfusions and drug therapy. The cost of this package is higher than the costs reported by Johnson et al. [3] and the Minister of Health [23] for hospital care. However, since the costs reported for hospital care do not cover community and outpatient services used by patients, it is probable that the cost of hospital- and community-based services will be similar. The main difference in costs may lie in who pays for the services: local authorities, health authorities, private or voluntary sector groups. One advantage of the community care package would be that it relieves pressure on acute hospital facilities. 4.2. Changes

in drug therapy

The only new drug yet to be introduced on any scale specifically for patients with HIV-disease is zidovudine. The initial American trials of zidovudine indicated that it was beneficial to both AIDS and ARC patients [24]. The probability of 24 week

14

survival for AIDS patients on zidovudine was 0.96, compared to 0.76 for AIDS patients given the placebo alternative. For ARC patients the probability of 24 week survival was 1.00 and 0.81 for zidovudine and placebo, respectively. These differences were statistically significant (P values of
and intensity

of care

There is some evidence that the average length of hospital stay is falling. For example, in the San Francisco area the average length of stay per admission has declined from 18.2 days in 1982 to 12.3 days in 1984. At the M.D. Anderson Medical Center, Texas, the average length of stay has declined from 30 days at the start of the epidemic to 15 days in 1986 [5]. Some of the changes in duration of hospital stay are probably due to the changes in location of care discussed above in Section 4.1. However, some may be due to increased knowledge about the disease, and the reduction of inappropriate or unnecessary hospital care. Against this reduction in hospital care, the introduction of community-based services may well increase the total amount of care given to AIDS patients.

15

5. Value for money and priorities in the treatment

of AIDS

As the number of AIDS cases grows there is concern that scarce health service resources will be diverted from other beneficial uses [27]. In the U.K. it has been estimated that the recurring expenditure on AIDS and AIDS-related services in Bloomsbury Health Authority (one of the major London authorities treating about 15% of the U.K. cases of AIDS) will amount to &2.3 million in 1987 [28]. If the growth in the number of cases continues in line with some of the projections, the immense size of the funding problem will force tough choices. Health economists’ have addressed the issue of priority setting in two main ways. First, it has been customary to calculate the relative economic burden of diseases on the community, in terms of their direct medical care costs, the indirect costs in terms of production losses owing to morbidity or premature mortality and the intangible costs associated with morbid events. Typically, the intangible costs are not estimated owing to measurement difficulties, and the indirect costs, estimated using the earnings of those in employment, are approximately twice the size of the direct costs. Scitovsky and Rice [5] have produced estimates of the direct and indirect costs of AIDS in the U.S. for 1985, 1986 and 1991. They found that the direct medical care costs of AIDS represented 0.2% of total personal health care expenditures for the U.S. population in 1985, rising to 1.4% in 1991. Similarly, the indirect costs of AIDS represented 1.2% of the total indirect costs of all illnesses in 1985, rising to 12% in 1991. The main reason for the high indirect costs is that AIDS affects many young persons just embarking on their careers. This is in contrast to a number of diseases, which affect predominantly elderly persons. Whilst estimates of the economic burden of disease may provide a useful baseline for discussion of priorities, further analysis is required. For example, it could be considered to be a circular argument to suggest that priorities for future health care expenditures and research funding should follow the patterns currently observed in the cost of illness. In addition, the analysis of cost of illness does not address whether effective interventions exist to combat the diseases in question and the omission of the intangible costs of illness may lead to incorrect rankings of total cost if these do not mirror the direct and indirect costs. A second approach, which is gaining in popularity, is to calculate the qualityadjusted life years lost through disease and to rank potential interventions in terms of their cost per quality-adjusted life-year (QALY) gained. Essentially the approach involves assessing the morbidity and life expectancy of sufferers with and without the particular intervention and using data on the relative value (or ‘utility’) individuals place on health states to combine the mortality and morbidity information in a single index. Such calculations have now been made for a number of health care interventions both in North America and in the U.K. and ‘league tables’ of interventions, in terms of value for money, have been constructed [29,30]. The position of treatment for people with AIDS in such ‘league tables’ obviously depends upon the cost of treatment and its impact on the quality and quantity of life.

16

The Office of Technology Assessment [4] pointed out that the ‘level of per patient costs (for AIDS) is in the same range as treatment costs for other severe medical conditions’, such as chronic renal failure or end-stage cancer. Such endstage interventions are to be found at, or near, the bottom of published lists and no doubt it might be argued that they should therefore be assigned low priority for health service resources. However, the fact that resources are still made available for end-stage interventions suggests that society feels a duty to assist those whose lives could otherwise be cut short. Therefore the starting point for assessing the value for money from treatment for people with AIDS should be in whether it gives results in cost per QALY of a similar order to other end-stage treatments. If the annual cost of care for an AIDS patient is around the same as for hospital haemodialysis ($30,00&$40,000), how does quality of life compare? Churchill et al. [31] estimated utility values for haemodialysis and continuous ambulatory peritoneal dialysis by the time trade-off method [32]. This gives a utility value on a scale from 0 (dead) to 1 (healthy). However, no similar data exist for AIDS patients. An alternative approach would be to use clinical trial data on the mortality and morbidity of AIDS patients to calculate quality-adjusted life years. Williams [30] used the health status index developed by Kind et al. [33] in his calculations of the cost per QALY gained from hospital haemodialysis and other health care interventions. If data were available on the levels of disability and distress suffered by AIDS patients at different stages of the progression of the disease, it may be possible to derive utility values from the matrix given in Table 4. Such data are not generally available, although they may be obtainable from some of the clinical trials now being undertaken. Although disability levels will vary considerably, one can

Table 4 Valuation

matrix for 70 respondents Distress

Disability

I II III IV V VI VII VIII

rating

No disability Slight social disability Severe social disability and/or slight physical impairment Physical ability severely limited (eg light housework only) Unable to take paid employment or education, largely housebound Confined to chair or wheelchair Confined to bed Unconscious

Notes: healthy

rating B Mild

C Moderate

1.000 0.990 0.980

0.995 0.986 0.972

0.990 0.973 0.956

0.967 0.932 0.912

0.964

0.956

0.942

0.870

0.946

0.935

0.900

0.700

0.875 0.677 -1.028

0.845 0.564 *

0.680 0.000 *

0.000 - 1.486 *

A No distress

= 1.0; dead

Source: Kind et al.. 1982.

= 0.0; * = not applicable

D Severe

17

but surmise that AIDS and ARC sufferers are likely to be experiencing severe distress (category D). The other main aspect of priority setting in treatment for AIDS relates to the new drug therapy now available. Matthews [28] commented that the licensing of zidovudine has transformed the cost of AIDS services, adding a potential El.3 million to expenditure on AIDS in Bloomsbury - equivalent to 1% of the District’s total annual revenue allocation. If, out of moral duty or political expediency, it has been decided that AIDS patients should be given care, the debate then centres on whether the additional length and quality of life gained from the use of zidovudine, over and above previously-existing treatment regimens, justifies the extra visible costs. This question is being explored through economic analysis alongside a clinical trial of zidovudine. The essential features of cost-effectiveness analysis of AIDS treatments are discussed in the following section.

6. Conclusions: essential yses of AIDS treatments

features

of cost-effectiveness

anal-

This review has shown that despite the public concern about AIDS very little is known about the cost-effectiveness of treatment practices. Although a number of studies have been carried out in the U.S. there are differences in cost estimates that are difficult to interpret. Very few costing studies have been carried out in Europe and it is very difficult to make intra- and international comparisons. The cost implications of the rapidly changing treatment patterns require further investigation, in particular the increased emphasis on community care and the broadening of indications for the use of drug therapy. Little is known about the quality of life of AIDS patients and the impact that new patterns of care are having on quality of life. If, as is to be hoped, more economic analyses of the costs and effects of treatments for AIDS are to be undertaken in the future, they should embody certain methodological features. (i) A broad range of costs should be considered, including ambulatory care, community care and those resulting from the use of voluntary services. (ii) The frequency and length of spells of inpatient care should be recorded, from the time of diagnosis of an AIDS-related condition until death. The type of wards where patients are treated should be noted. (iii) Data on the social and physical functioning of AIDS sufferers should be collected, to facilitate the construction of quality of life indices or utility values. (iv) Where possible, economic analyses should be undertaken alongside controlled clinical studies, comparing new drug therapies with current care or comparing community-oriented care with hospital-based services. (v) The results of cost-effectiveness analyses of AIDS treatment should be compared with those of other health care interventions, especially those for end-stage disease, in order to inform the debate about health care priorities. (vi) In order to place them in a more dynamic framework, the results of cost-ef-

18

fectiveness studies of AIDS treatments should be used in modelling exercises to predict the economic impact of changing treatment practices given various assumptions about the epidemiology of the disease. Given the economic significance of AIDS, a number of important policy decisions are required, concerning the development of community-based care and the availability of funds for drug therapy. If economic analyses are to assist policy makers, it is essential that they embody the methodological features outlined above.

Acknowledgements We are grateful to Kevin Mahoney and Joachim Trostmann for help in gathering data from Germany and for commenting on an earlier draft of the paper. The Wellcome Foundation provides support to the Health Services Management Centre for study of the economic aspects of treating AIDS. However, we alone are responsible for the analysis undertaken and the views expressed.

References 1 Scitovsky, A.A., Cline, M. and Lee, P.R., Medical care costs of patients with AIDS in San Francisco, Journal of the American Medical Association, December 12, 256(22) (1986) 3103-3106. 2 Hardy, A.M., Rauch, K., Echenberg, D. et al., The economic impact of the first 10,000 cases of Acquired Immunodeficiency Syndrome in the United States, Journal of the American Medical Association, 255(2) (1986) 209-211. 3 Johnson, A.M., Adler, M.W. and Crown, J.M., The acquired immune deficiency syndrome and epidemic of infection with human immunodeficiency virus: costs of care and prevention in an inner London district, British Medical Journal, 293 (1986) 489-492. 4 Office of Technology Assessment, The Costs of AIDS and Other HIV Infections: Review of the Estimates, Washington DC, Office of Technology Assessment, U.S. Congress, 1987. 5 Scitovsky, A.A. and Rice, D.P., Estimates of the direct and indirect costs of Acquired Immunodeficiency Syndrome in the United States, 1985, 1986 and 1991, Public Health Reports, 102(l) (1987) 5-17. 6 Seage, G.R., Landers, S., Barry, M.A., Groopman, J., Lamb, G.A. and Epstein, A.M., Medical care costs of AIDS in Massachusetts, Journal of the American Medical Association, December 12, 256 (22) (1986) 3107-3109. 7 Kizer, K., Rodrigues, J., McHolland, G.F. et al., A Quantitative Analysis of AIDS in California, California Department of Health Services, 1986. 8 Health Insurance Association of America, Results of the Health Insurance Association of America and American Council of Life Insurance AIDS Survey of Member Companies, 1986. 9 Debeaupuis, J. and Tcheriatchoukine, J., Report on the Cost of Hospital Treatment for AIDS, Inspectorate General of Social Affairs, Paris, 1987. 10 Adler, M.V., Care for patients with HIV infection and AIDS, British Medical Journal, 295 (1987) 27-30. 11 Rees, M., Economic aspects of AIDS care in the community (unpublished data), 1987. 12 Meads, T., Personal communication, 1987. 13 OECD, National Accounts: Main Aggregates. Vol. 1, 1960-1984, OECD, 1986. 14 Green et al., Projecting the impact of AIDS on hospitals, Health Affairs, Fall 1987 (1987) 19-31. 15 Health Service Journal, News, 1987, 27 August, p. 977. 16 Bloom, B.S. and Kissick, P.D., Home and hospital cost of terminal illness, Medical Care, 18 (1980) 560-564.

19 17 Davies, L.M., Quality, Costs and ‘An Ordinary Life’, London, King’s Fund Centre, 1987, pp. 32-37. 18 Arno, P.S., The non-profit sector’s response to the AIDS epidemic: community-based services in San Francisco, American Journal of Public Health, 76(11) (1986) 1325-1330. 19 Burda, D. and Powils, S., AIDS: a time bomb at hospitals’ door, Hospitals, January 5 (1986) 5461. 20 Berlin Legislature, Document 9/207. Ninth Session, Berlin, 1981. 21 Liga Fachausschuss, Outpatient AIDS Care, 1987. 22 Cunningham, D. and Grifliths, S.F.. AIDS: counting the cost, British Medical Journal, 295 (1987) 921-922. 23 Minister of Health, Statement in the House of Lords, 1986. 24 Fischl, M.A., Richman, D.D., Grieco, M.H. et al., The efficacy of azidothymidine (zidovudine) in the treatment of patients with AIDS and AIDS-related complex: a double-blind, placebo-controlled trial, New England Journal of Medicine, 317(4) (1987) 185-191. 25 Richman, D.D., Fischl, M.A., Grieco, M.H. et al., The toxicity of azidothymidine (zidovudine) in the treatment of patients with AIDS and AIDS-related complex: a double-blind, placebo-controlled trial, New England Journal of Medicine, 317(4) (1987) 192-197. 26 Berliner, H., AIDS - casting a long shadow, Health Service Journal, June (1987) 644. 27 Goh, B.T. and Forster, G.E., ABC of AIDS: treatment of infections and antiviral agents, British Medical Journal, 295 (1987) 668-669 (Letters). 28 Matthews, T., The Impact of AIDS, Paper presented to the joint Institute of Health Service Management/Health Economists’ Study Group Meeting, York, 1987, July 68. 29 Torrance, G. W. and Zipursky, A., Cost-effectiveness of antepartum prevention of Rh immunization, Clinics in Perinatology, ll(2) (1984) 267-281. 30 Williams, A.H., Economics of coronary artery bypass grafting, British Medical Journal, 291 (1985) 326-329. 31 Churchill, D.N., Morgan, J. and Torrance, G.W., Quality of life in end-stage renal disease, Peritoneal Dialysis Bulletin, 4 (1984) 20-23. 32 Drummond, M.F., Stoddart, G.L. and Torrance, G.W., Methods for the Economic Evaluation of Health Care Programmes, Oxford University Press, Oxford, 1986, pp. 112-149. 33 Kind, P., Rosser, R.M. and Williams, A., Valuation of quality of life: some psychometric evidence. In Jones-Lee, M.W. (Ed.), The value of Life and Safety, Elsevier, Amsterdam, 1982.