AIDS TREATMENT

Table of Content

I. AIDSETI and the Network of People of Living with HIV/AIDS 6
I.1. Introduction and objectives of AIDSETI 6
Current Status 6
Indicators of Success 6
The above discussion shows that under the ABTM the management processes, procedures, and incentives of patients and caregivers can be especially well aligned to ensure: (i) testing, treatment and prophylaxis for OI for all those entering the program; (ii) high treatment quality; (iii) high compliance via culturally appropriate training and support of patients and caregivers; (iv) effective targeting to the uninsured who are unable to afford treatment; (v) transparent and ethical selection of patients by those who are directly affected by the disease and their doctors; (vi) cost-effectiveness in achieving longer lives of those under treatment and avoiding future orphans by targeting those with many dependents; and (vii) scalability in resource poor health systems. This operational manual spells out in detail the management processes and procedures, which can align incentives of all the actors involved an lead to the realization of the potential of this model. 8
I.2. Strategy to Achieve Medium-Term Objectives 9
I.3. The Institutional Consolidation Program 10
Strengthening treatment management 11
II. The Network Operating System 14
II.1. Eligibility criteria to enter into a partnership with AIDSETI 14
II.2. The Memorandum of Understanding 15
II.3. AIDSETI Management System 15
II.4. The Relations within the Network 16
III – The Association -Based Treatment Model in Poor Setting 17
III.1. The Holistic Approach 17
III.2. Guiding Principles 17
III.3. Selection of Patientsfor treatment 17
III.4. Discharge of individual patients 18
III .5 Medical Care Guidelines 19
III.5.a. Guiding Principle 19
III.5.b. Medical Management of Opportunistic Infections 20
III.5.c. ARV Treatment 21
III.5.d. Adherence/Compliance 23
III.5.e. Monitoring 23
II.6. IEC – Outreach programs 24
IV. Drug Stock Management 25
AIDSETI Supply System Options 26
Distribution Management 26
Procurement 27
Critical Issues in Drug Supply Management 31
Buying Generic ARV Drugs 31
Training of Personnel 31
Reporting Systems 32
Seeking Exemptions 33
Organizational Capabilities for Drug Supply Management 34
VI: Monitoring and Evaluation 36
VI.1. Introduction 36
VI.2. The patient database 36
VI.3. Indicators Recorded 36
VI.4. Output 37
Chapter VII. Financial Management 38
VII.1. Introduction 38
VII.1. Planning and Budgeting 38
VII.3. Accounting/Recording 39
VII.4. Internal Controls 40
VII.5. External Audit 41
VII.6. Consequences of Fraud, and inability to execute the agreed upon program 41
APPENDICES 42
Appendix 1: Memorandum of Understanding 43
Appendix 2: Financial Management Procedures (suggested) 53
Basic Features 53
Account Type 56
Type Description 56
19 CAPITALISATION ACCOUNT 56
The Account sub group 57
1100 MEMBER CONTRIBUTIONS 57
2102 GOODS, VEHICLE AND EQUIPMENT 57
Internal Audit 59
External Audit 60
Entry into Cash Book 64
Basic Controls 64
Expenditure from Petty Cash 65
Entering Transactions in the Accounting Records 65
Re-imbursement of Funds 66
Objective 67
System for Signature of Contracts 67
Standard Contracts 67
Appendix 3: Standard monitoring and evaluation data sheet 70
Appendix 4: Reference Materials 71
Appendix 5: Useful Addresses and Contact Persons 72


I. AIDSETI and the Network of People of Living with HIV/AIDS
I.1. Introduction and objectives of AIDSETI
The Mission of AIDSETI



AIDS Empowerment and Treatment International has been created, and will be run, by people living with HIV/AIDS – both infected and affected – in the South and the North.

AIDSETI will empower associations of people living with AIDS in the South by supporting their positive living and survival skills programs and by providing a medical safety net to ensure the survival of their members and leaders.


AIDSETI will enable the associations, their doctors and their counselors with the knowledge, tests, and financial and pharmaceutical resources to run their own programs for the prevention and treatment of opportunistic infections and for advanced anti-retroviral treatment.


AIDSETI will also support complementary programs of these associations to continuously enhance treatment adherence and quality, home, hospice, and orphan care.

Current Status


AIDSETI was incorporated in December 1999 and has obtained its 501(c)(3) tax exempt status. The 25 associations affiliated with AIDSETI in Africa and the Caribbean are already treating over 500 patients using surplus drugs. Building on these experiences, the AIDSETI network has developed the capacity to implement much larger treatment programs.



Expected Outcome

The outcome will be the growing moral resolve, physical strength, and influence of people on the front line, who -- in turn -- are helping thousands and even millions of others deal with the epidemic.


This will create catalytic links between positive living, treatment, prevention, and mitigation; strengthen the role of the associations in national HIV/AIDS programs; forge real solidarity between them and their counterparts in the rich countries; and fight the stigma -- and spread -- of AIDS through the voluntary disclosure of people’s HIV status.

Indicators of Success

Success will be measured principally by the number of association members participating in positive living and survival skills programs, and the number of patients enrolled in the medical safety net program, the quality and sustainability of the services provided to them, and their own sense of well being. Other yardsticks of progress will be the volume and timeliness of financial and in kind transfers to the associations in the South, the size of the membership of the associations in the South, the number of members willing to disclose their HIV status, and the involvement of the associations and their members in the fight against AIDS as experts and political activists. Ultimate success will be in the number of lives saved via positive living, prevention and treatment of opportunistic infections, ARV treatment, and HIV infections prevented by the activities of the associations.

Consolidating the Association-Based Treatment Model (ABTM)

The ABTM is one of several possible treatment models for resource limited settings. The distinguishing feature of the ABTM is that the financial, pharmaceutical and human resources for the treatment program are under the control and managed by associations of people living with HIV/AIDS working closely with doctors and other service providers of their choice.

Based on the experiences of its associations, AIDSETI has fully developed the association-based model for HIV/AIDS treatment (ABTM), described fully in this operational manual, including treatment guidelines, ethical patient selection, patient monitoring system, support to adherence, as well as drug management, financial control procedures, etc. AIDSETI will use the year 2002 to demonstrate the quality, cost-effectiveness and scalability of the ABTM further in 25 associations of the 15 countries of Africa and the Caribbean. By the end of 2002, the AIDSETI network expects to cover 24 000 patients with prevention and treatment of opportunistic infections, of which 6000 will also receive anti-retroviral treatment. At the same AIDSETI will have established the logistics, information technology systems, and training teams required for rapid scaling up to additional associations and additional countries. It will then make the procedures, systems, and this operational manual available to any association willing to use them anywhere in the world.





Medium Term Development Targets


The medium term development objective is to raise sufficient resources in order to reach the following targets by the end of 2004:

Establish the replicability, scalability, quality of treatment, and cost-effectiveness of the Association-Based Treatment Model.
Associations of PLWAs will be supported in at least 30 countries of Africa and the Caribbean
At least 100,000 patients in these associations will be covered by diagnostic tests, and prophylaxis and treatment for opportunistic infections.
Of these at least 25,000 patients receive anti-retroviral treatment and the associated diagnostics and adherence support.
The value of direct frontline treatment services will be at least 90 percent of the total value of the resources mobilized by AIDSETI.

Early Accomplishments

About 25 associations of people living with HIV/AID or APLWHAs, potential members of the AIDSETI Network, have demonstrated that it is feasible to provide live-saving ARV treatment to over 500 HIV/AIDS patients in 13 developing countries. This remarkable achievement was based on the creativity, commitment and skills of a handful of volunteers, a majority living with AIDS, originating from various countries and backgrounds. They have organized themselves into associations that promote prevention and positive living among members and within the community, fight the stigma of HIV/AIDS, provide social support for patients and their families, and organize treatment programs using donated drugs. Associations of people infected or affected by HIV and their doctors are highly motivated, can distribute drugs faster and more cost-effectively than governments, and, with a minimum of oversight and control, can be trusted to implement donation programs. More specifically, AIDSETI focuses the ABTM for several reasons.

Reasons for focusing on the Association-Based Treatment Model

Empowering APLWHAs with a medical safety net increases their visibility, reduces the stigma associated with HIV/AIDS, and will have large positive spillover effects for society at large in terms of prevention, mitigation, and care. Their members and leaders will have a chance to become essential contributors to the fight against AIDS as role models, counselors, advocates and managers and providers of care and treatment.

The associations typically have strong support from their doctors, who often volunteer their services. Indeed the help and commitment of a doctor was often critical in the formation of the associations. Members of the associations have overcome fear and stigma to fight for their health and well-being. As members of associations they will receive psychosocial support and benefit from the other services the associations seek to provide, such as emergency food supplies, nutrition education, and legal help. Access to these services will improve compliance, and therefore reduce the development of resistant strains of viruses.

APLWHAs, together with their doctors can handle the ethical difficulties associated with patient selection better than people who are not personally affected. Moreover, associations in the developing world typically have more women members and children than men. They exclude wealthy and powerful individuals. Focusing assistance on them helps avoid diversion to those who have the ability to pay for the drugs.
The above discussion shows that under the ABTM the management processes, procedures, and incentives of patients and caregivers can be especially well aligned to ensure: (i) testing, treatment and prophylaxis for OI for all those entering the program; (ii) high treatment quality; (iii) high compliance via culturally appropriate training and support of patients and caregivers; (iv) effective targeting to the uninsured who are unable to afford treatment; (v) transparent and ethical selection of patients by those who are directly affected by the disease and their doctors; (vi) cost-effectiveness in achieving longer lives of those under treatment and avoiding future orphans by targeting those with many dependents; and (vii) scalability in resource poor health systems. This operational manual spells out in detail the management processes and procedures, which can align incentives of all the actors involved an lead to the realization of the potential of this model.
I.2. Strategy to Achieve Medium-Term Objectives
AIDSETI now intends to extend the successful prototypes of the association-based treatment model or ABTM on a larger scale, and make this model into a major component of a broader strategy to expand ARV treatment to millions in poor countries. The broader strategy is sketched out by the AIDSETI president, Hans P. Binswanger, a rural development expert at the World Bank in “How to Make Advanced HIV Treatment Affordable for Millions in Poor Countries.” The expansion strategy hinges on a combination of two basic thrusts, the first of which is based on the recent sharp price reductions and full cost recovery from those who will be able to afford the drugs at the new, sharply reduced prices. This price reductions will make it profitable for the private sector to invest in the medical infrastructure needed to implement the treatment successfully. The second thrust consists of programs targeted to those who will not be able to afford the treatment even at sharply reduced prices, and will have to be financed largely by compassionate donations from a broad range of donors. Both thrusts will work better where governments do their part to ensure quality health services for their population. Lower drug prices will greatly increase the reach of programs based on donations and will make them more sustainable. Given the groundwork laid by AIDSETI these targeted, community-driven approaches can now move much faster than they have to date, with immediate implementation in 15 countries only awaiting the required funding.

Streamlining the collection of recycled drugs, and handling additional drugs donated and purchased by AIDSETI and/or the affiliated associations, will lead to a sharp increase in the number of patients to be monitored, an increase in the volume and complexity of the shipping requirements, and a need for closer coordination and management. AIDSETI realizes that the network of associations must be further consolidated into a full-fledged professional organization capable of managing logistics, monitoring finances, evaluating the effectiveness and efficiency of programs, and soliciting financial and in-kind support for the work of its member associations.

The capacity of the receiving associations to select eligible patients, provide psychosocial support, monitor cases, and keep records needs to be rapidly strengthened. This manual defines the procedures that member associations will follow to accomplish those tasks. In addition the operational manual also defines the relationship of the associations with the AIDSETI network, as well as the operational procedures of the network, its Board of directors, and its technical committees.
I.3. The Institutional Consolidation Program
The AIDSETI’s Institutional Consolidation Program (ICP) was adopted in January 2001 and then updated by an Action Plan for 2002 adopted in December 2001. Both documents are avialable on AIDSETI website at www.aidseti.org. The ICP will accomplish the following goals before the end of 2004:.

- It will raise to 100,000 the number of HIV positive association members and clients which are receiving medical follow up and monitoring. Around half of these are likely to be in stage three and four of the HIV disease and will therefore need prophylaxis and prevention of opportunistic infections and/or Anti-retroviral treatment, which is expected to reach 25,000 of the HIV positive members enrolled in the program.
- It will improve and expand the capacity of member associations to design, administer, and support treatment programs, in part through development of a clinical database on patients, their ARV treatment, and the treatment outcomes.
- It will establish a management structure that will enable AIDSETI to strengthen and expand the network of associations capable of implementing the decentralized, participatory treatment model.

The ICP will be supervised by AIDSETI’s Board of Directors and managed by several technical committees, relying primarily on donated time. The AIDSETI President and Administrative Coordinator will be jointly responsible for financial disbursements and reporting. The ICP will continue to mobilize the creativity and energy of activists, their associations, and their doctors. It will maintain its bottoms-up approach, and increasingly rely on the growing expertise and commitment available in the developing world. The member associations and experts from the industrialized world will increasingly function as facilitators, rather than as direct actors; their main responsibility will be resource mobilization.

An interim report will be provided after the first nine months of the ICP (late December 2002). At the end of the program year a final evaluation will be distributed to sponsors and made available to the public at large.

The success of the ICP will be measured by:
the number of association members participating in positive living and survival skills programs,
the number of patients enrolled in positive living regimen and OI treatments and of those under ARV treatment, and the quality and sustainability of the services provided to them.
the volume and timeliness of financial and in-kind transfers from bilateral and multilateral donors, the private sector, communities of people living with HIV/AIDS and other donors ,
the size of the membership of the associations, the number of members willing to disclose their HIV status, and
the involvement of the associations and their members in the fight against AIDS.

ARV treatment for 6,000 patients

Under the ICP, AIDSETI will mobilize pharmaceuticals to treat at least 6,000 AIDS patients by enlarging the present drug-recycling program from 600 to 1,000 recipients and by obtaining drugs for another 5,000 patients through purchases or donations from pharmaceutical companies. The pharmaceutical products will include ARV drugs, sophisticated drugs for opportunistic infections, and HIV/AIDS tests.

A rolling fund will enable associations to avoid stock ruptures and interruptions in treatment. Allocations from the fund will be made first to associations that have developed a community pharmacy.

Strengthening treatment management

The ultimate goal is to define a feasible, replicable, cost-effective treatment model to be used by any APLWHA in poor setting or ABTM, and the following intermediate steps will be undertaken to test a replicable scalable ABTM. Steps will ensure that recycled, donated, and purchased pharmaceuticals are properly handled and used. Those steps include community pharmacies, a pharmaceutical management system, computerized patient histories, an upgraded logistics system, and standardized management data.

AIDSETI will provide incentives for the Network member associations to develop community pharmacies that will accept, manage, and allocate donations and acquisitions from AIDSETI and other sources. The community pharmacies will operate according to the pharmaceutical management system described in this Manual (Chapter 5).

A real-time pharmaceutical management and distribution system will be developed to monitor movements of drugs between collecting and distributing associations. The system will be designed to avoid stock ruptures and monitor efficiency in terms of unit costs and delivery time.

A computerized patient follow-up system and clinical database, using a standardized patient history file, will be installed in each participating association. Anonymous clinical data will be made accessible to AIDSETI-approved researchers to assess efficiency and sustainability. A first evaluation report is planned for the World Conference on AIDS in Barcelona in 2002 (technical manual).

AIDSETI’s logistics system (handling, storing, packaging, labeling, shipping) is consolidated in the AID For AIDS or AFA offices in New York, which will receive assistance in its fundraising efforts, as well as direct financial support from AIDSETI.

Quality-of-treatment grants will enable associations to improve the lives of patients receiving or awaiting ARV treatment by helping them avoid weight loss, opportunistic infections, and treatment interruptions, and by ensuring adequate testing, follow up, and record keeping. Examples of eligible expenditures include medical tests and follow up, emergency supplies of ARV drugs to ensure complete and continuous treatment, drugs for opportunistic infections, and nutritional and food supplements for very poor eligible patients. The availability of the grants will encourage participating associations to develop efficient and innovative approaches to comprehensive patient care.

Other programs will experiment on various aspects of the ABTM, in particular the relations with the public health system and the hospitals. Experiments in referral procedures with support and diagnostic centers attached to hospitals will be tested. Other operational research programs will be negotiated with pharmaceutical companies and other research institutes. Other aspects will include treatments of such OI such as meningitis and mother-to-child AIDS transmission.

Strengthening association capacity

Through the ICP, AIDSETI will strengthen its Network of associations. Measures will include a management system, field support visits, this operational manual, a series of workshop, and a global, web-based, communications net connecting all members.

During the ICP period AIDSETI will primarily focus on its existing network of associations, rather than aiming at expanding the number of associations.

AIDSETI will assist its participating associations to implement a management system that meets standards for NGOs in poor countries by providing training and matching grants. The grants will focus on installing the data information and management system within each association and ensuring that monitoring, evaluation, and auditing systems are compatible with AIDSETI procedures. On average, associations will require two counselors, a nurse, a part-time manager for the community pharmacy, and a data analyst/accountant.

AIDSETI will provide on-the-job training through site visits to member associations by teams of trainers, managers, and counselors. AIDSETI will audit a sample of associations to identify measures required to ensure that management data will be comparable and susceptible to aggregation across all participating associations.

AIDSETI will also assist associations in raising their own funds for their treatment and other programs of support to their members and clients, such as strengthening positive living and survival skills, prevention, member support, human rights, and advocacy. The associations will be provided with a fundraising kit to assist them in accessing private donors, bilateral aid agencies, their own national HIV/AIDS programs, and community funds financed by World Bank, IDA loans, or the Global Fund for AIDS, Malaria and Tuberculosis. Efforts to diversify funding sources and so ensure sustainability will be one of the criteria AIDSETI uses to assess the support it provides to a given association.

A web-based communications system will integrate monitoring, reporting, and evaluation across the entire AIDSETI network. The system will:

Aggregate data provided by each association (including especially a confidential patient data base, drug management, and financial data) into a coherent information system to mutually inform all associations of progress and problems, guide the board of directors in its analysis, provide the central office with accounting and monitoring data, and help prepare proposals for funding and drug donations
Allow the technical committees and training teams to observe and spread best practices
Prepare semi-annual performance reports, define future targets, evaluate annual budgets, prepare the annual report, and update the three-year rolling development program.
Expand the public information available at the AIDSETI web site.
Workshops will promote contact among members from different associations of people living with HIV/AIDS. Board members and specialists in community building and grassroots movements will help association members identify and transfer valuable changes and improvements. The workshops will also build esprit de corps and a sense of accomplishment.
II. The Network Operating System
II.1. Eligibility criteria to enter into a partnership with AIDSETI
Eligibility of associations of people living with HIV/AIDS or AIDS service organizations to join the AIDSETI network will be determined by the Board of AIDSETI upon recommendation by a member association or a sub-committee designated by the AIDSETI Board. The Board will consult its technical committees, as necessary. If the association meets the eligibility criteria, it is invited to join the network. Acceptance of the Association is formalized in the signing of the Memorandum of Understanding adopted by the AIDSETI network at the Florida Retreat.

Associations and AIDS service organizations becoming a Network member must be managed and run primarily by People Living with HIV/AIDS, both affected or infected. They must have or establish a board and officers, as well as an elected finance sub-committee, and a medical advisory team. They must also keep minutes of board meetings and up to date financial records.

Associations and AIDS service organizations must, with the help of a medical doctor and other advisors, have in place, or under development, a program that includes:

A Positive Living and Survival Skills Program, which includes nutrition education, stress management, and psycho-social support
Real links between their programs of prevention and care
Treatment and reduction of the risk of opportunistic infections
Links to TB programs and other key OI infections such as meningitis
Clinical follow-up of people under anti-retroviral treatment
As their capacities expand, the associations will be encouraged to establish programs for:
Follow up in the home of patients needing special assistance
Targeted programs to orphans, MTCT, students, sexual minorities
Community supply of nutrition supplements and medications, either by having their own management and storage capacity and a dispensing license, or in collaboration with other entities
Associations and AIDS service organizations must demonstrate that they do not discriminate on the basis of gender, religion, ethnicity, sexual preference, and social class; or against sex workers and people with drug dependencies.

Cessation of Support for Associations

The AIDSETI Network will suspend its support to an association for a breach of the MOU including:

Financial irregularities, such as misuse of money or selling of drugs.
Weaknesses in the implementation of the programs and procedures, which were in place or agreed during the initial selection – after reasonable support for capacity building and remedial measures have not led to results.
Lack of transparency and/or non-compliance of associations with their own approved selection criteria and processes, or lack of due diligence in maintaining confidentiality.
II.2. The Memorandum of Understanding
The AIDSETI Network of APLWHAs is a group of independent entities that voluntarily and because they share common goals and objectives decide to implement joint specific programs by signing a Memorandum of Understanding. This MOU specifies the mutual obligations of the two signing parties. The MOU is structured into four parts:
a first statement of the common vision and strategy shared by all Network members
an annex listing the common and general obligations of AIDSETI as an independent association and the other signing party
this Operational Manual as an updated tool to define the procedures to be applied for any joint program
an annex specific to each joint program listing the various monitoring and evaluation tools to be implemented
The MOU as adopted at the Florida Retreat is attached at Appendix I. The MOU can be amended or modified after consulting all APLWHAs already members of the Network. A regular consultation will be organized by AIDSETI on the OM and its applicability and the possible adjustments required.
II.3. AIDSETI Management System
AIDSETI is an independent association with its own Bylaws and institutional set up. Details are available at its website at www.aidseti.org
Its main bodies are:
A Board of Directors of a maximum of 15 members. At least two thirds of the Boar must be HIV positive, more than 50 percent must be residents in countries of the South, and at least 45 percent must be women. Every year the Board will hold elections for around one third of the Board members.
A president, regional vice presidents, a treasurer and a secretary
A small administrative unit
A Finance Committee and Technical committees
II.4. The Relations within the Network1[1]
The information sharing system: See more details in Chapter on Monitoring and Evaluation.
The technical committees: Four are created: medical, pharmaceutical, training, and information management. They will be used as a tool to help all Network members improve their procedures, strengthen their capacity building, remaining abreast with most recent treatments, sharing experience and absorbing new members. Because the Network is focusing on providing adequate treatment to APLWHA patients using an ABTM, most of the programs will be defined, financed and implemented in cooperation with other AIDS service and funding organizations
The audits: The OM specifies the types of audits that will be required from a Network member when implementing a joint program.
III – The Association -Based Treatment Model in Poor Setting
A research paper is is being drafted by AIDSETI members and Stanford University to present the potential and prospects of the ABTM at the World Conference on AIDS in Barcelona in July 2002. After the presentation and discussion of this paper at the Conference, this chapter will be completed.
III.1. The Holistic Approach
>>> We need a para on alternative approaches in the absence of ARV and beef up the holistic approach. The alternative approach in the absence of ARV is the provision of OI prevention and treatment. With or without ARV the patients may be participating in the holistic approach and in alternative treatments.