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4. Getting the facts
   Last updated: 29.06.02
Section 4: Getting the facts

Approaches and concepts that have proved effective in one region, are not always understood or accepted as being relevant in another region. Concepts around care and support and NGO development often need to be examined in the local context for their relevance to be clear.

The continuum of care
The Alliance promotes a comprehensive approach to care and support within a continuum (as outlined in Section 2) – in order to meet the varied material, psycho-social and medical needs of PLHA and those affected, and encourage the involvement of relevant stakeholders.

The concept of a continuum of care has been developed from experience in a number of regions over a period of time, and refined by the World Health Organisation. In its move from awareness raising to involvement in care and support, the Alliance explored the concept of this continuum with its partner organisations.

As a starting point, the Alliance supported its partners to develop a clear understanding of the meaning of “comprehensive” and “continuum” in order to adapt them to their own specific needs and resources. In practice, this has been carried out through a variety of means. For example, there has been an on-going technical exchange process between the AIDS Programme in Ecuador and partner organisations in Brazil which has enabled NGOs from Ecuador to observe the range of services provided by government and NGOs and how these can link together. The workshops addressed this by looking at the specific needs of the PLHA with whom participants were working to see how these needs fitted into a continuum of care. The chart in section 2 of this chapter is an example of this from Thailand.

Planning a continuum of care, Asia

At the “Community Lessons, Global Learning” Asia workshop, a small group developed a simple grid to brainstorm the “ideal” continuum of care for specific groups of PLHA:

Example: Potential roles within a continuum of care for pregnant PLHA
Government
  • Policy for testing with consent of women.

  • Subsidised or free AZT according to income level.

Hospitals
  • Laboratory support.

  • Counselling.

  • Delivery of services without discrimination

NGOs
  • Counselling.

  • Infant feeding.

  • Home visits.

  • Traditional birth attendant services.

CBOs
  • Counselling.

  • Home based care.

  • Strengthen families of PLHA.

  • Transport to hospitals.

  • Home visits.

PLHA
  • Basic information provision.

  • Counselling.

  • Legal rights awareness.


(Reference: Report of “Mobilising Care, Community Support and the Involvement of People with HIV and AIDS in Asia,” Thailand, October 1998).

Access to Treatment

Access to treatment has emerged as perhaps the most significant issue affecting PLHA. The issues around access to treatment are complex, with different interpretations from different organisations about what “access to treatment” actually is. At community level, especially in countries where the visibility of HIV is low and service provision is poor, treatment may be limited to the most basic drugs – and even these may not be accessible to the poorest people. Making these drugs and other more complex drug regimens both available and accessible at community level is part of improving access to treatment. But treatment is broader than just drugs, and cannot be provided without psychological support and practical help.

In particular, concepts of access to treatment do not always take into account local and localised barriers to accessing treatment and drugs, however cheap and simple. NGOs at local or national level often have limited experience and/or knowledge of what is involved in providing or improving access to treatment. Discussion and analysis at community level enables NGOs to understand the complex issues around supply, storage, ethical issues and a range of other challenges in improving access to treatment. The Alliance has been developing these ideas in order to provide tools for organisations working at community level who want to facilitate access to treatment for people with HIV.

While promoting a model of care and support that is never just about drug treatment the Alliance recognises the vital role of drug therapies within a comprehensive approach. As one PLHA from Ecuador says: "This country is very poor. The majority of PLHA have died because of their economic situation and because of a lack of medicines. If we don’t … find help and medicines, we do not stand a chance. It’s not a question of taking one pill a month - we need proper, long-term medication."

Making drugs available and accessible is not simple. Challenges include the technical issues – such as supplies and storage. For example, as a representative of the joint Ministry of Health and NGO project on home based care in Cambodia, says: “An on-going problem has been finding and storing drugs... Although more of a problem for patients in hospital than at home, adequate analgesia is also difficult to find, with no opium-derivatives permitted in the country. In addition, keeping home care supplies stored properly and safe from theft has been troublesome.”

Sharing lessons and experiences has shown that there a number of different models to achieve improved access. In Senegal, the multi-sectoral “Cellules” – or “solidarity networks” – supported by the Alliance linking organisation, ANCS, (Alliance Nationale Contre le SIDA) have each found local ways to improve access to treatment for PLHA. While some facilitate access to subsidised drugs from hospitals, others have developed “comités de santé” – a type of local insurance scheme. These are managed by a committee of community members and health personnel who buy generic drugs that are on the government’s essential drugs list and re-sell them at a reduced, subsidised cost.

In Burkina Faso and Cambodia, groups have been encouraged to ensure on-going and monitored provision of essential drugs, within the context of home care, rather than short term or ad hoc provision of complex treatments. For example, in Cambodia, the home care teams use a medical kit that contains a range of basic treatments to improve the clinical status and personal comfort of the PLHA (see box). In Burkina Faso, AMMIE, an NGO based in Ouahigouya, tries to provide free drugs when the family cannot afford treatment. They estimate that the cost of a basic care package is about US $20 per person to start the treatment and up to US $5 per person per month during the following months. In contrast, it is estimated that hospital care costs $18 per day. Data from Alliance partners in Cambodia and from IPC in Burkina Faso also indicate that home based care is better value than hospital care both for the patient and to the provider.

YRG Care in India has developed a system where consultations are free, but there is a charge for testing and medication if the patient is able to pay. Medical care is linked to counselling and social support. YRG Care advises on treatment regimes and symptom control, but also on accessing social welfare systems. The cost of medical care is very high in human and financial resources, and strategies for sustainability are vital. The organisation currently depends on donations - in cash or in kind, and from businesses, patients and friends to meet some of their costs.

At a national level, linking organisations in both Cambodia and Burkina Faso have contributed to national policy. For example, IPC (Initiative Privée et Communautaire, the linking organisation in Burkina Faso) has developed a list of the cheapest, most effective essential and generic drugs for the management of the most common HIV-related conditions, based on the experiences of NGOs and the government’s essential drugs list. This resource has been distributed to other NGOs.

Home based care is part of a continuum of care and support. At the “Community Lessons, Global Learning” seminar in Senegal, IPC shared their experiences of supporting NGOs to carry out home based care in Burkina Faso. They explained how the system of identifying potential patients varies according to the circumstances of the NGO. La Bergerie is one of IPC’s partners whose members include manyhealth professionals so, for example, identification of patients may occur at the National Yalgado Hospital and the TB Prevention Centre. As one PLHA recalls: “I was hospitalised and I got to know one of the nurses. After being discharged, he came to see me at home.”

NGOs in Burkina Faso carry out visits several times a week or a month, depending on the individual’s need. They follow a basic procedure (see box), and always include psychological and, if requested, pastoral support. As one PLHA volunteer says: “I try to raise their morale and I pray with them.” People do not identify themselves as “AIDS volunteers,” but as volunteers working with the chronically ill, and volunteers involve the family and talk openly about the disease only when a PLHA agrees. However, the reality is that many have not been tested and very few mention HIV/AIDS.

In Burkina Faso, India and Cambodia, the volunteers and health professionals delivering home based care are provided with a home care kit (see box on page ??). Basic clinical care is only offered within a focus on the overall well-being of the PLHA. Time is spent talking through how people are coping – both physically and psychologically – and helping with domestic chores, such as washing and cooking. Time is also allocated to the family members, supporting them to both care for their relative and ensure protection against HIV. By including an informal assessment of the child members of the family, home care teams can also identify “soon to be orphans” and set in motion the process of planning support.

In Zambia, a major barrier to appropriate treatment was the lack of adequate food, making treatment much more difficult and less effective. While this did not apply in Côte d’Ivoire (see box) the issues are still complex.

Contents of a home based care kit, Cambodia


Paracetemol 500mg tablets
Gentian violet 15ml vials
Potassium Permanganate 10mg sachets
Bicarbonate of soda 500mg tablets
10% iodine solutions 30mls vials
Hydrogen peroxide 30mls vials
Calamine lotion 500mls
Oral rehydration salts
Benzyl Benzoate 30mls
Nystatin suspension 25ml
Gloves
Bandages
Soap powder
Household bleach
Cloths
Condoms
Matches
Plastic bags
Tweezers
Scissors
Plasters
Cotton Wool
Micropore tape
Elastic bands
Safety pins
Menthol balm
Talcum powder
Coconut oil
Promethazine 100mls
Loperamide
Multivitamins
Primperan

Source: February 1999, Project Review, Cambodia

Basic procedure for home based care visits, Burkina Faso

Home visits by La Bergerie in Ouagadougou include:
  • Customary greeting.

  • Review of how the illness has developed since the last visit.

  • Physical examination of the patient.

  • Questioning of the patient to find out their complaints, care and supplies of medicines.

  • Provision of hygiene advice to the PLHA and their family.

  • Spiritual support (if needed or requested).

  • Date given for next visit.


Côte D’Ivoire

The following is a summary of two of the key questions and findings arising from the Alliance needs assessment on access to HIV- related treatment in Côte D’Ivoire:

1. What is a basic care package?
  • Prescribers pointed out that their provision of treatment was essentially dictated by the availability of resources rather than a strategy to address the care and support needs of PLHA.

  • There is currently no consensus or guidelines for what a basic care package should offer.

  • Treatment algorithms were considered un-adapted to the local availability of resources.

  • Generic drugs were not widely used or available, so prescribers were not familiar with their optimal use in the treatment of HIV infection and its complications.

  • Pharmacists said that using drugs requires knowledge and skills both in procurement and in counselling and follow-up. These are not widely available, even in pharmacy training.

  • Counsellors felt easily overwhelmed by the economic and emotional needs of their clients, and are vulnerable to burn-out. Questions of the boundaries of support were often raised.

  • All felt that they would have benefited from more knowledge of different models of care delivery – to allow them to select and blend elements most appropriate to their patients.


2. What must be in place to assure this basic care package?
All caregivers stated that they were very much “learning on the job” and had never anticipated a number of issues that were essential to ensuring good care delivery. These included:
  • Good medical records, including: knowing how to identify records while protecting confidentiality; filing systems; and managing information such as test results.

  • Systems for ensuring patient follow-up, including how to give out appointments and know whether patients are returning or not; and monitoring drug efficacy “in the field”.

  • A mechanism to recover at least some of the costs incurred, such as fixed per-prescription costs or monthly registration fees.

  • Having several independent drug suppliers - to get the cheapest, most effective drugs and protect against supply disruption.

  • A drug inventory system to monitor drug stocks and re-order efficiently.

  • A system for supporting the work of volunteer counsellors to build solidarity, avoid burn-out, and ensure quality support to clients.


(Reference: Adapted from “Summary of Key Points: Needs Assessment on Access to HIV-Related Treatment,” Côte D’Ivoire, January 2000).

Source: Care, Involvement and Action
This is an extract from Care, Involvement and Action: Mobilising and supporting community responses to HIV/AIDS care and support in developing countries, published by the International HIV/AIDS Alliance in July 2000.

To view the whole report follow this link

To download, complete with graphics, in pdf format (which requires Adobe Acrobat software to read it) follow this link (file size: 455 Kbytes).