Issues for consideration regarding treatment

There are several issues that need to be raised for consideration with regard to the provision of treatment and greater accessibility to cheaper antiretroviral drugs to prolong life and improve the quality of life of PLWHAs.

First, owing to limited resources and lack of trained manpower in health care systems and the weak commitment of Governments in many countries across the region, access to medical treatment for AIDS-related illnesses is not easy. In addition, the availability of affordable ARV drugs to reduce viral loads remains a major obstacle for the majority of PLWHAs. The challenge, therefore, remains for each individual country to expand its efforts to improve access to the means to prevent opportunistic
infection and provide adequate treatment for all PLWHAs. The situation is far worse among the poor and unskilled – and often illegal – alien migrant workers who are actively moving in large numbers across borders to countries of destination. Most of these populations are not covered by any national health care programmes. Thus, Governments should adopt strategies that would ensure access to cost-effective prevention and treatment programmes as well as non-discriminating health-care services to assist HIVpositive migrant workers (both legal and illegal), at least on humanitarian grounds without taxing the country’s budget.

Second, the previously mentioned alternative treatments have become the treatment of choice for PLWHAs in many countries owing to their inability to access modern, effective treatments. An emerging concern over this issue is determining how these alternative treatments and health-care services can be strengthened so that they become more cost-effective and provide acceptable health-care standard services. An issue is how to manage and guide caregivers (such as traditional or indigenous healers
and monks, for example) so that they strictly retain codes of conduct and maintain high moral principles in providing health care services for PLWHAs. Another issue is how PLWHAs and their families seeking alternative treatments could be adequately protected from being taken advantage of by unethical care service providers.

Third, the policy of using short-course AZT for pregnant women and AZT syrup for children, and the use of powdered formula to substitute breast milk to reduce the chances of viral transmission from mother to child proved to be successful in a few countries such as Cambodia and Thailand. Although these programmes may add some burden to the national budget, this means of prevention could well be considered by countries where the HIV infection has become prevalent among pregnant women as a
means for controlling the spread of HIV.

Fourth, it has been suggested that voluntary counselling and testing is an important service for identifying those who can benefit from early treatment; thus, these services should be promoted and made widely available. The aforementioned World Bank report found that, while voluntary counselling and testing is available in Thailand, the service is underutilized. In addition, the quality of counselling services and their links to care programmes has not yet been evaluated. Many PLWHAs discover that they have been infected only when their health begins to fail. Among the reasons for persons not
seeking voluntary counselling and testing services are a lack of awareness or knowledge of how HIV can be transmitted and that measures exist to prevent transmission. Another reason could be the probable social stigma and discrimination they may face in revealing their HIV-positive status. In this regard, NGOs could play a key role in promoting nondiscrimination and respect for human rights.

Fifth, for a country with a vaccine development programme or where a clinical trial of an HIV candidate vaccine is being considered, ethical issues regarding the safety of the volunteers and the potential for social harm and the violation of human rights must be carefully considered as a top priority.

Care and support

With regard to care and support, the UNGASS 2001 Declaration (items 56-57) recommended that the country should develop and implement comprehensive care strategies to strengthen family and community-based care, provide and monitor treatment to people living with HIV/AIDS. Working conditions and capacity of health personnel should be improved as well to ensure the effectiveness of supply systems, the referral mechanisms and financing plans. In addition, psychological care for individuals, families and communities needs to be developed and provided (United Nations and UNAIDS, 2001).

The Report on Results of the Eighth United Nations Inquiry among Governments on Population and Development (United Nations, 2001) indicated that a large number of Governments worldwide have adopted measures to promote greater community participation in reproductive health-care services. Eighty-one per cent of Governments reported having undertaken measures to decentralize the management of public health programmes. Eighty-two per cent of Governments have formed partnerships with local NGOs, while 72 per cent of Governments worldwide have formed partnerships with private health-care providers. The inquiry results indicated high recognition of the
importance of community participation in the process of providing health care.

With regard to the HIV/AIDS pandemic, the burden of long-term care for large pools of PLWHAs has grown beyond the capacity of government health-care systems to cope with. Family and community involvement and participation have become the key concept to deal with care issues. Family and community-based care approaches currently are used as an important strategy for AIDS prevention and care in many countries. In this approach, the family and community are considered to be the most important basic social units to share responsibility in handling the consequences of AIDS and care for their own members at the grass-roots level. At the same time, the family and community should develop their own strengths in promoting an understanding and compassion for PLWHAs (Rau, 1994).

Care of a broader scope covers many elements including the following: policy, medical care (treatment of and prophylaxis against opportunistic infections, and antiretrovirals), nursing, laboratory services, pharmacological services, counselling, social support, self-help group activities, home and community-based care, alternative care and health promotion (Siraprapasiri, 2002b). More narrowly, care covers four important dimensions, according to the World Health Organization: medical care, nursing care, counselling services, and social and psychological support. It is believed that these four dimensions could be best carried out at home and in the community.

Family or home-based care offers several advantages over other care provision systems. Economically, home care generally costs less in comparison with hospital care, and places less of a burden on health personnel in caring for chronic symptoms over the long term. Mentally and psychologically, PLWHAs feel much better and are more comfortable when surrounded by their family members, especially at the terminal stage. Socially, family ties and relationships among family members are strengthened while the family is encouraged to take a role and share responsibility in providing care when their own members are ill. Community-based care under the main concept of civil society has been introduced as a key tool to solve AIDS-related problems and to provide care for PLWHAs.

However, it is important to understand that the introduction of family- and community-based care into the existing heath-care system does not mean totally transferring all responsibilities or imposing the burden of care to families and the communities. Rather, it involves attempts by the Government to create more involvement of the family and the community in the caring process, and to provide moral support for PLWHAs.

Based on an extensive situation analysis in the four regions of Thailand (Limanonda, 2001), four basic elements have been identified as very important mechanisms in sustaining family and community-based care systems. They include the PLWHAs, the family and community, NGOs and the State or governmental organizations. A full discussion on these dimensions, illustrating Thai experiences as a case study as well as identifying problems involved in each mechanism, is expected to shed some light on the issue for many other countries which are considering integrating family- and community-based care approaches into their health-care systems. PLWHAs are the beneficiaries of the system and their potential should be tapped to run community-based care system. PLWHAs are more aware of their own vulnerability and have a much greater stake in the adequacy and appropriateness of the services provided. However, it is important to recognize that the health conditions of PLWHAs include physical, mental and spiritual dimensions and their potential is basically an important qualification that enables them to initiate and carry out activities which are most beneficial to them.

The spread of HIV/AIDS at unprecedented rates in six of the northern provinces of Thailand has forced entire communities to adjust themselves to live with the epidemic in a more harmonious manner. In the early period of the epidemic, the discrimination of the public forced PLWHAs to form self-help groups to support each other. Subsequently, with the full support of various governmental and non-governmental organizations, these self-help groups developed into a well-constructed network where the basic rights of PLWHAs could be protected in order to negotiate for their well-being. Over time, with greater understanding of the public towards HIV/AIDS, PLWHAs have been better accepted and better integrated into the community.

Unlike the situation in the six northern provinces of Thailand, in the central, northeastern and southern regions, there are many conditions that have obstructed or weakened the ability of PLWHAs to form social networks. PLWHAs were unable to reveal themselves owing to strong social stigma and discrimination, since the epidemic in these three regions exploded within a short period of time while the general public was unaware of it and unprepared for it. The situation was worse among illegal migrant
workers (in the fishing and rubber industries) who concealed themselves because of their illegal status and inability to access adequate health-care services. Another obstructing condition for social networking among PLWHAs was the high level of mobility among the population (in the northeastern part of the country), or among fishermen (in the southern part) who normally had less education, lived in poorer conditions and had less access to health-care information and services.

The two basic social units, the family and community-based organizations, are believed to play a critical role in responding to AIDS-related problems. The participation or involvement of the family and communities in providing care for sick persons means much for the survival of the new system of caregiving. However, the effectiveness of the family- and community-based care approach depends on many factors, the most critical of which is the readiness of the family and community to cope with their own problems, such as the burden of care provision, the cost of providing care and medication, the capability of coping with discrimination, the psychological effects associated with the illness and the eventual death of the ill member. Other important factors are regular support and supervision from health-care personnel at various levels as well accurate knowledge and positive attitudes towards HIV/AIDS among community members. To strengthen the ability of families and communities in combating HIV/AIDS, assistance is needed from all the parties involved. For instance, in order to empower the community, the TASO Community Initiative Programme in Uganda helped to identify needs and objectives, train community volunteers to be educators and visit homes to provide counselling and assistance with care, distribute condoms and refer people for HIV testing and medical treatment (as cited in Limanonda, 2001). This approach is widely used in many part of Africa. Thailand also adopted a community-based approach for AIDS prevention, initially setting up the programme in the northern region where the HIV epidemic was most severe.

The family is an important mechanism for shouldering responsibilities as a caregiver for PLWHAs, especially in the community, where the degree of discrimination against the PLWHAs is likely to be high. A study by Saengtienchai and Knodel (2001) well illustrates that providing care to HIV infected family members is a heavy burden, especially when the caregivers are elderly parents who have to care for their young sons or daughters. Care-giving tasks include assistance with the needs of daily living
(preparing food, doing laundry, assisting the ill person in eating, dressing, bathing and using the toilet); assistance with health care (monitoring the ill person’s current status, accompanying him or her to health service sites, staying with him or her at the hospital, seeking remedies and cures, administering medication at home); and giving moral support (calming the patient, providing encouragement and providing favourite foods). Besides carrying out these heavy tasks, the parents are likely to have gone through substantial stress and strain in care-giving, including those that are emotional, physical, social, financial and time-consuming. In addition, evidence from many places has clearly shown that families have faced a number of problems in providing care for PLWHAs. These problems deserve greater attention, and solutions should be sought to alleviate the burdens of care of the family.

Most families lack basic knowledge and higher understanding about HIV/AIDS prevention, transmission and treatment; yet they are indirectly “forced” to assume the role of caregiver for their ill family member.

Families lack necessary resources for caring, including the ability to buy high-cost medications, basic equipment for caring (such as antiseptic agents, rubber gloves for daily care and cleaning), and do not have sufficient access to a referral system when it is needed.

Families lack information on treatment and good sources of counselling, especially at times when the family and PLWHAs need emotional and spiritual support.

Not much attention has been paid to the needs of family members who act as caregivers, most of whom are women. Such caregivers are also in a vulnerable position since they have to carry out other burdens in the household in addition to providing care for the PLWHAs.

On the other hand, greater involvement of civil society organizations and participation of community-based organizations, such as women’s groups, volunteers, religious institutions and religious leaders, self-help groups and members of the community) are considered to be key factors in combating HIV/AIDS epidemics. The question that remains to be answered is how to promote greater participation of the community concerned in caring for PLWHAs.

With regard to NGOs, basically, the role is to coordinate and supplement in order to fill gaps where governmental organizations are unable to provide health care services. Through the strong support of the Thai Government and international organizations, the NGOs working on HIV/AIDS-related problems in that country have increased rapidly from 23 organizations in 1992 to 184 in 1997. The number of AIDS-related programmes and activities also grew from 35 to 247 during the same time period. The national budget allocated to these NGOs also increased dramatically from 11.9 million baht to 90 million baht (Poolchareon and others, 1999).

With regard to State or governmental organizations, in the development of this new health-care approach, the Government should be a very important mechanism in setting up national policies concerning the control and prevention of HIV/AIDS as well as treatment, care and support of PLWHAs in addition to the allocation of the budgets necessary for the development and operation of HIV/AIDS control strategies.

Since the early days of the HIV/AIDS epidemic in Thailand, the Government has attempted to curb the spread of the virus through the declaration of the National AIDS Policy in 1987. Later, the National AIDS Control and Prevention Committee was established, as well as relevant coordinating agencies from the national to the subdistrict levels. Budgets allocated to AIDS programmes and activities have increased
exponentially (except for 1997 when the country experienced a financial crisis).

Issues regarding care and support through the family and community

Currently, family- and community-based care has been initiated in many countries as alternative care strategies provided for PLWHAs through the basic concept of civil society and participation of the family and community in caring for their ill members. Based on Thailand’s decade-long experience, there are a few issues relating to the operation of this new health care strategy which deserve attention from all the parties concerned.

First, quite a large number of HIV-positive persons still do not want to reveal their identity because of strong social stigma and a high degree of discrimination. The questions are how could the community, PLWHAs self-help groups and HIV/AIDS networks extend their assistance directly or indirectly to those who are in hiding? Is there any channel to enable PLWHAs, without revealing themselves, to have greater access to proper health-care services on a more equal basis with those who already have access?

Second, the HIV/AIDS epidemic is a long-term problem. In the new dimension of care, the family and community as a caregivers should be relatively sustained. The main question in this regard is: how can the family and community be prepared or strengthened to be able to care for the PLWHAs, as this task will become a heavy burden, especially among poor families? Therefore, it is essential that the community should have learned how to develop into a “strong community”, and to be more independent from outside assistance. This would be of special value in the future when resources from the Government or other sources are no longer available or become inadequate in covering the costs of caring for the rapidly increasing number of families with PLWHAs.

To reach these objectives, the family and the community should be strengthened or empowered through various approaches, such as learning to be confident in their own wisdom; reorganizing the relationship structure within the family and community in order to encourage the members to think and to work as a group or as network; participating more in problem-solving processes; and learning how to manage or administer the new caring system most effectively within the limits of available local resources.

Third, in connection with the strengthening of the family and the community’s capability to manage their own problems, PLWHAs networks and NGOs as key partners in fighting the epidemic should also be encouraged to become involved fully in all activities from the planning to the implementing stages. This principle is known as “the greater involvement of people living with HIV/AIDS”, or GIPA (UNAIDS, 2001).

Fourth, as in many traditional societies, religious institutions and religious leaders in Thailand appear to play a significant role in providing care and giving spiritual support to PLWHA and their families. Many Buddhist temples or hospices founded by Buddhist monks have become the centre of last resort for ill and dying AIDS patients rejected by their own family or community.

Fifth, the issue of orphans and young children affected by HIV/AIDS deserves attention, since their population group is in a vulnerable position both in the family and in the community. UNAIDS (2001) has estimated that so far the AIDS pandemic has produced 13.2 million orphans worldwide, who before the age of 15 lost either their mother or both parents to AIDS. Although many of these children have died, many more have survived. These HIV/AIDS-affected children usually have difficulties in daily living in their own community owing to social stigma and various forms of discrimination. They also often lack proper care within the family, especially when both parents died of AIDS.

In this regard, it is important to identify strategies so that the State, NGOs and the community could extend help to care for this group of children. Moreover, national resources may have to be set aside to support homes which provide care for HIV/AIDSaffected babies, orphanages and foundations, as well as day-care centres or even social welfare programmes for children suffering from the effects of HIV/AIDS. Social support is necessary to encourage friendly environments to reduce the social stigma and discrimination against these young children and orphans, and at the same time to integrate them into the mainstream of society so that they could lead a more normal life.

Sixth, the body of knowledge regarding family- and community-based care is generally lacking. No systematic compilation of information for reference or for knowledge-transfer exists. In addition, owing to limited research budgets and manpower constraints most of the research in the area of family- and community-based care for PLWHAs is usually small-scale and location-specific. Hence, the findings are less useful for the development or improvement of the system in general.

Seventh, one aspect of home- and community-based care which is largely neglected by most researchers is psychological care and support which is as important as physical care. Religious and symbolic activities could help to boost the morale of PLWHA, the ill who are at the terminal stage. This kind of spiritual support could be best provided by the family and the community close to PLWHAs.

REFERENCES

Brown, Tim (2002a). “The HIV/AIDS epidemic in Asia”, Asia-Pacific Population & Policy, April, No. 60.

Brown, Tim (2002b). “HIV/AIDS in Asia”, in, The Future of Population in Asia, (Honolulu, East-West Center Population and Health Studies).

INTAIDS (2002). “Campaign for more Yen for GFATM”, a petition from the Africa-
Japan Forum HIV/AIDS Working Group (August).

Kunanusont, Chaiyos (2000). AIDS: Puzzle, Impacts and Responses in Thailand, (Bangkok AIDS Division, Ministry of Public Health, J.S. Printing).

Larson, Heidi J. and Jai Prakash Narain (2001). Beyond 2000: Responding to HIV/AIDS in the New Millennium, (New Delhi, World Health Organization Regional Office for South-East Asia).

Lewis, Nancy Davis and Jodi Baily (1992/1993). “HIV, international travel and tourism: Global issues and Pacific perspectives”, Asia-Pacific Journal of Health, vol. 6, No. 3, pp.159-168.

Limanonda, Bhassorn (2001). Home and Community-based Care for Persons Living with HIV and AIDS in Thailand: Lessons Learned and Future Prospects, (Nonthaburi, Thailand, Health System Research Institute).

POPLINE (2001). “Widespread HIV epidemic could hit Asia”, POPLINE, December. Poolchareon, Wiput and others (1999). The Evolution of AIDS Control in Thailand: Best Practice for Development of Health Promotion Concept, (Nonthaburi, Thailand, Health System Research Institute), (in Thai).

Rau, B. (1994). “AIDS and communities: Lessons for policy makers”, AIDScaptions, Family Health International AIDSCAP Project, vol. 1, No. 2, May.

Saengtienchai, Chanpen and John Knodel (2001). Parents Providing Care to Adult Sons and Daughters with HIV/AIDS in Thailand: UNAIDS Case Study, Best Practices Collection, (Geneva, Joint United Nations Programme on HIV/AIDS), November.

Siraprapasiri, Taweesap (2002a). “AIDS prevention and control program”, a paper presented at the meeting entitled “Preventive HIV Vaccine: Together We Can”, organized by the AIDS Division, Ministry of Public Health, Bangkok, 23-24 August.

Siraprapasiri, Taweesap (2002b). “Care: Policy and strategies”, a paper presented at the Workshop on Direction, Policies and Research Progress on Development of Health Technology on AIDS-Related Issues, organized by the AIDS Division, Ministry of Public Health, Bangkok, 15 May.

Thaineau, Vallop (2002). “Policy and direction of HIV vaccine research and development”, a paper presented at the meeting entitled “Preventive HIV Vaccine: Together We Can”, organized by the AIDS Division, Ministry of Public Health, Bangkok, 23-24 August 2002.

UNAIDS (2001). Report on the Global HIV/AIDS Epidemic: June 2000, (Geneva, Joint United Nations Programme on HIV/AIDS), (reprint), April.

UNAIDS and World Health Organization (2001). AIDS Epidemic Update: December 2001, (Geneva, Joint United Nations Programme on HIV/AIDS).

United Nations (2001a). Population, Gender and Development: A Concise Report (ST/ ESA/SERA/193), (New York, Department of Economic and Social Affairs, United Nations).

United Nations (2001b). Results of the Eighth United Nations Inquiry among Governments on Population and Development, (New York, United Nations), (January).

United Nations and UNAIDS (2001). Declaration of Commitment on HIV/AIDS: United Nations General Assembly Special Session on HIV/AIDS, 25-27 June 2001, (New York,United Naitons Department of Public Information and Joint United Nations Programme on HIV/AIDS).

Weniger, Bruce and others (1991). “The epidemiology of HIV infection and AIDS in Thailand”, AIDS, No. 5 (suppl. 2), pp. S71-S85.

World Bank (2000). “Thailand’s response to AIDS: Building on success, confronting the future”, Thailand Social Monitor, November.