AIDS CARE, WHY AND HOW SHOULD INDUSTRY RESPOND?

Rose SmartHIV/AIDS Consultant

IntroductionThe AIDS epidemic is becoming ever more visible

and industries are increasingly facing the challenge of providing some form of care for workers who become disabled due to AIDS. In one large para-statal in South Africa, there are now twice the number of deaths in service: 7 per 1 000 p.a. and in 1998: 50% of ill-health retirements were due to AIDS. In the gold mining industry, from 1993 to 1999 the rate of occupancy of medical beds in mine hospitals doubled from around 4 per 1 000 to over 8 per 1 000.

Healthcare services and HIV/AIDSIn addition to the procedures for medical separation due

to ill-health which are common across most industries, there are important issues to be considered when workers who are migrants become ill and are repatriated. In many instances they are returned to areas where health care services are poorly developed and often over-burdened. Their care becomes the responsibility of women (often old women) and children who frequently have little or no access to appropriate resources or support. Home care can thus become synonymous with home neglect when people are discharged from work or from hospital back into the community without proper arrangements and planning.

Poverty and HIV/AIDSThe context for care is thus frequently one in which poverty is

pervasive. In general, poverty not only affects the progression of HIV disease but also the quality of care received. The factors that affect the health of the poor (inadequate and overcrowded housing, unsafe drinking water, poor sanitation, undernutrition and infectious diseases) will decrease survival time of people with HIV disease. AIDS strains the resources available to households, being redirected to treatment and transport. There are also additional costs of care such as bed linen and special foods. The cycle of poverty does not end with death; funerals represent significant financial burdens. And the lives of children orphaned by AIDS change after the death of their parents, indeed they change even before the death of their parents

Definition of HIV/AIDS care

Whilst HIV/AIDS care may be defined as care for those uninfected but at risk; asymptomatic HIV-positive individuals; those with early HIV disease; those with late disease or AIDS and those who are terminally ill the focus of the document is on those with late disease or AIDS. The care and support needs are very different at different stages.

• The objectives of care should be understood as they relate to the patient, his or her family, their community, the care givers and the broader health service

Objectives of HIV/AIDS Care

Patient Reduce suffering and improvequality of life Provide appropriate treatment ofacute intercurrent infections

Family Render practical supportLend bereavement support

Care givers Improve quality of careProvide support

Communities Improve capacity to copeReduce stigma

Health Services Reduce pressure on servicesSave costs

Principles

The principles that should guide attempts to establishhome or community based care include:• that decentralisation and integration of HIV/AIDS services offer

the best chance of sustainability and cost-effectiveness. • An effective response, however it is structured, must be multi-

sectoral. • Effective care and support initiatives should be linked with

prevention and control activities.• Comprehensive care should be provided through all stages of

infection and across a continuum of care, encompassing spiritual, emotional, nutritional and social needs as well as physical needs.

• And finally, community members must have full ownership of the initiatives.

Elements of AIDS care (1)

COMPONENTS ELEMENTSSupport groups andnetworks of peopleliving with HIV

Access to HIV testing, Counseling

Home based care –patient needs

Effective pain relief, supportManagement of symptoms

Home based care –carer needs

Training in basic skillsSupport

Home based care –family needs

Assistance with material needsSupport with routine household tasksSpiritual and emotional supportAdvice about wills and inheritancePreparation for death and the funeralSupport for children orphaned byHIV/AIDS

Elements of AIDS care(2)Components CareHealth services Restructured TB control programmes

Restructured general medical servicesImproved access to essential drugsImproved resources for primary healthcare

Clinical guidelines on: Common early infectionsOpportunistic infectionsAnti-retroviral therapyPalliative and terminal care

Referrals Between different levels on the health caresystemBetween the health care system andNGOsBetween traditional healers and both theabove

The care package:may be judged according to six dimensions (1)

Appropriateness: Does the package as a whole respond to the main health needs of the target population?

Acceptability: Are the services provided in a manner that is acceptable to the target population and encourages their appropriate utilisation?

Accessibility: Are the services provided so that the problems of access (geographical, economic and social barriers) are minimised and equity is promoted?

The care package:may be judged according to six dimensions (2)

Effectiveness: Do the services provide satisfactory outcomes both from the clinician’s / health care provider’s point of view and that of the users and their families?

Efficiency: Are the elements of the package provided so that the maximum output is obtained from the resources expended and does the mix of services represent the best value for money with regard to the health needs of the population?

Equity: Are the health needs of different sections of the target population met in a fair and just fashion?

Cost of Home based care• Relating to the costs of home or community based care,

models indicate that hospital outreach services are costly compared to community initiated care models. An outreach service in Zimbabwe cost between US$16 – US$42 per visit whilst a community home based care project in Zambia only cost US$2 per visit.

• When assessing any service, a cost effectiveness analysis should be a critical component.

• To conduct such an analysis there must firstly be a well-defined question eg is home-based care for workers with AIDS cost-effective in comparison with hospital or hospice

care.

Cost-effective analysis of AIDS Care

• Need to do a comprehensive description and comparison of alternative strategies.

• In conducting the analysis it must be clear which perspective is being used (the costs and consequences to the health system, the industry or to society as a whole).

• The identification of direct costs (drugs, transport etc) and indirect costs (loss of income due to time away etc) must be made as well as those costs that may be shared with other interventions.

• Once this has been done, it will become possible to compare the costs of alternative strategies.

Indicators of the care package components

Indicators which could be identified in relation to thecomponents of the care package could include

• support groups and networks of people living with HIV

• the provision of home based care (linked to patient, carer and family needs)

• responsiveness of the health system• the existence and application of clinical guidelines; • and the effectiveness of referrals.

Care Task Teams

Any organisation with a commitment to providing care should establish a Care Task Team to develop a care strategy. This strategy should describe who will:• have access to the care (present employees, past

employees, dependents of employees)• what the care will consist of (the core care

package);• and who will cover which costs.

Summary

• Having reviewed any existing services for HIV/AIDS care it will become possible to identify the gaps and shortfalls which exist in the delivery of the core care package.

• This done, those priority gaps which are most critical to fill or most cost-effective to provide should be highlighted.

• Partners who can assist must be ascribed their roles and responsibilities, remembering the value of linkages with other sustainable development programmes.