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Annex 2 twg 2 report.doc

The National Strategic Framework for HIV/AIDS
Activities in Uganda: 2000/1 – 2005/6
Mid-Term Review Report
THEME 2: CARE AND TREATMENT TECHNICAL
WORKING GROUP
December 2003
1. EXECUTIVE SUMMARY

We conducted a review of the progress in care and treatment as part of the ongoing Mid-Term
Review of the National Strategic Framework (NSF). The specific objectives for care and
treatment theme were to review and comment on the: a. progress in care and treatment, b. care
and support indicators and c. to make recommendations on strategic priorities for 2004. The
major areas of our focus were: prevention and treatment of opportunistic infections, antiretroviral
(ARV) treatment, pediatric AIDS, palliative and home-based care. The thematic consultant
worked very closely with the technical working group (TWG) comprising of 12 members. The
methods of work included review of documents and interview of key informants. In addition the
TWG held 6 meetings to review progress and exchange information on the thematic area.
Care Strategies Included in the NSF:
Provide more support to local NGOs/CBOs involved in the provision of care:
NGOs, CBOs and FBOs are the major providers of community care. Government, bilateral
organizations and other donors have supported them. However, funding and technical support is
limited. To date UAC/AMREF have registered over 750 NGOs/CBOs but coordination and the
monitoring of range, coverage and quality of services has been limited. There is considerable
potential of these organizations for community care, supporting adherence, advocacy & referral.
Strengthen Palliative care
The MoH has supported the integration of palliative care into all national policy documents.
Using the WHO (2002) definition a number of organizations are providing the service to varying
degrees. To date organizations such as TASO have cared for over 70,000, Nsambya Home Care
over 15,000, Mildmay over 7,000 and Hospice over 6,000. With regards to training, Hospice has
trained a total of 1,090 health professionals and 531 non - health professionals, while Mildmay
has trained over 2000 health workers. There is no policy document on palliative care. Such a
document will help in the standardization and monitoring of services.
Strengthen modern and herbal treatment for OIs
Major progress has been made in the areas of TB treatment and in the distribution of fluconazole.
Training and care guidelines for OIs have been drafted but implementation guidelines to guide
treatment of OIs at different levels of care have not been written. In addition diagnostics and
treatment for most OIs are limited in most health facilities. There is need for research on the
efficacy of herbal treatments in the treatment of OIs.
Care Interventions that are not Adequately Addressed in the NSF:
Antiretroviral Therapy
ART National Policy, care and Implementation Guidelines are in place. Prices for ARVs have
substantially reduced. Currently its estimated that 17,000 patients are on treatment, but there is
hope that an extra 40,000 will receive treatment in the next 3 years. Resource mobilization has
taken place. However the availability of these drugs to all that need them, the procurement and
logistics, the infrastructure and the training needed for effective and safe use of ARVs need
further attention.


Home Based Care
Home Based Care has been largely implemented by the non-government organizations. The
Ministry of Health in collaboration with NGO partners has trained health workers in 11 districts.
A training manual for health workers, monitoring and evaluation tools as well as support
supervision tools have been developed. The major gaps are: lack of policy and implementation
guidelines and limited resources and access to HBC service and a weak referral system across the
continuum.
Paediatric AIDS Care
Recently, the Government and other partners in care have recognized that children are a special
group. Some work has started in this area such as the starting of a few pediatric HIV clinics.
Some policy guidelines such as PMTCT, ART and VCT address issues of children. However,
there are issues that are specific to children such as diagnosing and assessing HIV disease,
counseling and communication, pediatric ART formulations, sexuality of adolescents with HIV
that have not been adequately addressed. Overall there are no clear guidelines and policies on
pediatric care in the areas of psychosocial support and disclosure procedures. In addition there is
limited access to pediatric HIV care and training of Health Care Workers.
Conclusions/Recommendations
Overall we found that there is significant progress in care on those strategies that were included in
the NSF but also in other care areas that had not been included in the NSF such as anti-retroviral
therapy. Best practices for care and treatment in Uganda should be documented and shared within
and outside the country. We found that quantifying progress in care is difficult and the indicators
will need to be revised to allow for feasible and routine M & E of care activities. We suggest that
the revised NSF goals/objectives/strategies be as broad as possible to accommodate the multiple
care activities. The document should take into account that AIDS care is dynamic. We suggest
that a specific goal focusing on care be included in a revised NSF. Such a goal could be phrased
as follows:
"To increase and expand access to comprehensive care and support for people living with
and affected by HIV/AIDS".

Some specific objectives are suggested in the recommendations' section.

2. DESCRIPTION OF THE TWG
Refer to Table 5 in appendix
3. APPROACH TO THE TASK OF THE TWG/METHODOLOGY
The TWG for care and treatment was constituted in Mid-October, 2003. Six meetings were held
on October 29th and November 4th, 11th, and 18th at Uganda AIDS Commission offices, November
25th in the department of medicine at Mulago and November 26th in the Institute of Public Health.
During the first meeting, we reviewed the roles of TWGs and selected a chairperson, a vice
chairperson and a secretary. This was followed by a review of TOR and methods of work. The
methodology for the review (key informat interviews and review of key documents) was agreed
on by the members. The document and key informant list was then reviewed for completeness.
Lastly, the group agreed on the meeting time table and venue for the meetings. At the end of the
meeting, members agreed to pilot the instruments by collecting data from their own
organizations. During the subsequent meetings, the TWG reviewed progress and exchanged
information on the thematic area. In particular, we assessed progress of care strategies and
activities using the information that was being collected from the interviews and document
reviews. The last two meetings were devoted to synthesis of the data collected and the final report
content.
Appendices 1, 2 and 3 show the documents reviewed, key informants interviewed and an example
of the data collection instrument used.

4. NSF PROGRESS TO DATE
Refer to Table1 in Appendix

5. LESSONS LEARNED

The process of TWG was an effective way of taking the review. The choice of members was
excellent. Their knowledge of care issues was very good and there was a good mix of people
from different backgrounds of HIV care. The roles of TWG were clearly understood by all the
members. The TWG members were very diligent and readily accepted extra responsibilities such
as doing some interviews and reviewing of some of the documents. The TWG members
suggested that more time was needed to complete the MTR exercise. The process should have
involved field trips to districts. Consultations with communities, consumers and carers would
have added value to the review. Some TWG members reported that the exercise helped them to
examine progress of their own programmes. The reimbursement to the TWG for their time was
thought to be inadequate and sometimes delayed.
With regards to implementation of NSF, we found that several key people in care and treatment
were not adequately aware of the NSF. A revised NSF should be disseminated widely. The area
of care and treatment is currently very dynamic and has dramatically overtaken the NSF. Lastly,
we appreciated that implementing quality care and treatment is expensive and requires a huge
investment in infrastructure and training.

6. CONSTRAINTS
Provide More Support to Local NGOs/CBOs Involved in the Provision of Care:
NGOs/CBOs have been a backbone in the response to the HIV epidemic. NGOs, FBOs and
CBOs have been supported to offer services in care including provision of Home Based Care
services, palliative care and support to children. This support comes from World Bank (MAP)
Uganda AIDS Control Project (1465 CHAIs have been approved for funding), the AIDS
Integrated Model (AIM) district Programme (109 grants to district based organizations), CDC,
DANIDA, DFID, EGPAF, EU, GTZ, Ireland AID, AVSI, UNAIDS, UNICEF, USAID, WFP,
and the WHO. These NGOs/CBOs have considerable potential for community - based care
including ARV delivery, IEC to de - stigmatize HIV and promote HIV care seeking, advocacy,
and supporting adherence to treatment among their communities.
The main constraints of these organizations are: -
• Lack of adequate funding limits care activities • Some CBOs have limited capacity in planning and implementing HIV/AIDS programmes • Some NGOs/CBOs lack the ability to account for funds • There is limited coordination, monitoring and evaluation mechanism for the numerous • The lack of registration for some of these NGOs makes it impossible for them to access • The patient referral system between the community and hospitals is weak • Lack of a community training manual limits community care activities
Palliative Care:
There has been considerable progress in the implementation of palliative care services, in 14
districts. Palliative care for children is being provided mainly by Mildmay.
The major constraints in the provision of palliative care have been identified as: -
• Lack of a national palliative care policy • Palliative care for children is limited • There is limited integration of palliative care into existing health care services • High demand but few trained health workers in the area of palliative care • High demand for palliative care yet few NGOs provide the service • The patient referral system between palliative care and other care options is weak • Limited access to palliative care in rural areas • Prescription of morphine is still restricted
Opportunistic Infections:
The strengthening of OI treatment has made major progress in two areas. The implementation of
Community Based DOTS has now expanded to 35 out of the 56(63%) districts in the country. In
addition, treatment success rate for smear positive cases has risen to 53% and the case detection
risen to 60%. Monitoring has improved greatly (NTLP now gets returns from all districts
including urban areas). Secondly, the Fluconazole program began in February 2002 through a
Pfizer donation to the Uganda Government. The drug is distributed to all government referral
hospitals, mission hospitals, the police, the armed forces, prisons, and all TASO centers.
The major constraints in this area have been identified as:
• Lack of a national policy guidelines on prevention of OIs • Inadequate staffing for all cadres of staff including doctors, nurses, clinical officers and • Lack of laboratory facilities (27% of government facilities reported lab capacity to conduct any tests related to HIV/AIDS, TB or STIs) • Chronic stockouts of medicines and other consumables used in management of OIs. Over 50% of government facilities experienced a stock out (in the past 6 months) of cotrimoxazole, 29% of chloroquine, 46% of benzathine penicillin, and 50% of TB blister packs. Government facilities were more likely to experience a stock out than non-government facilities. • Inadequate coverage of rural areas in terms of facilities and health care personnel • Expensive drugs needed for the treatment of O1s
Herbal Treatment:
Collaboration between traditional and western medicine is being spearheaded by THETA through
training of traditional healers. A policy on traditional and complimentary medicine is being
developed.
• Lack of collaboration and linkages between traditional and western medicine • Lack of evidence-based practice in traditional medicine • Lack of funding for the development of traditional medicine research
7. EMERGING ISSUES

Home Based Care:

Home Based Care has been largely implemented by the non-government organizations. The
Ministry of Health in collaboration with NGO partners has piloted Home Based care activities in
11 districts namely Gulu, Arua, Kitgum, Pader, Lira, Soroti Iganga, Kampala, Mpigi, Hoima and
Masindi. A training manual for health workers, monitoring and evaluation tools as well as support
supervision tools have been developed. Linkages between Home Based and palliative care
interventions are being strengthened to enhance quality of care for the People Living with AIDS.
Home Based Care is a vital component to other interventions for care including PMTCT, ARV,
CB DOTS and palliative care. There are different models for implementation of HBC activities
that could be adopted.
Constraints: -
• Currently there are no policy and implementation guidelines. • There is a high demand for Home Care and yet resources, including funding, drugs, material assistance and human resources are limited. • There has been irregular support supervision and monitoring and evaluation of activities • The referral system and continuum of care linkages are not yet fully developed. • Issues for Home based Care for HIV infected children and others that have been made
Paediatric HIV Care:

Recently, the Government and other partners in care have recognized that children are a special
group. Counseling issues for children are well articulated in the Uganda National Policy and
Guidelines for VCT services. Plans to incorporate HIV/AIDS in the IMCI algorithm are
underway. The national PMTCT program, which is aimed at reducing pediatric HIV rates, is now
available in 31 of 56 districts. Specialized Paediatric HIV Clinics have been established at
Mildmay, Mulago, and Nsambya, hospitals. PCP prophylaxis to HIV exposed children is
increasingly becoming available. A small number of children have been started on HAART;
160/2100 at Mildmay, 30/900 at Mulago and there are plans to procure syrup formulations for
children under five. Guidelines on counseling and community care for children have been
developed by SCF-UK. Several organizations are using WHO guidelines on pediatric care;
training and clinical care guidelines are being developed.
Constraints: -
• Access to care services for children is still limited. • Training Health Care Workers in pediatric HIV/AIDS has been hampered by lack of a • There is limited sensitization and awareness of the benefit of care and treatment for infected children leading to stigma and discrimination. • There is very limited psychosocial support for infected and affected children. • Diagnosis of HIV in children under 18 months of age is expensive. • There is poor linkage between PMTCT Programs and pediatric care services. • Adolescent care services are limited. • There are no clear guidelines and policies on pediatric care and HIV serostatus disclosure
Antiretroviral Therapy:
There has been considerable progress towards preparations for providing ARV treatment in the
private and public health sector.The National Policy, care and implementation guidelines are now
available for partners implementing HIV/AIDS care programs. According to the Ministry of
Health, 33 facilities have been accredited to provide ART including the majority of regional
hospitals (ie. Mbale, Arua, Gulu, Masaka, Mbarara, Kabale, FortPortal, Jinja and Soroti) and
currently 17,000 AIDS patients out of 150,000 eligible patients are receiving ART from 27 ART
centers. About 80% of these patients meet the full cost of treatment. Adherence to treatment is
>90% and approximately 80% of patients suppress virus to undetectable levels within 3 months.
MTCT-Plus programmes have started. There are 4 sites countywide: Arua - MSF, Kabarole -
GTZ, Nsambya and Mulago- UNICEF/University of Columbia. Each of these two sites will
enroll 250 patients (the project is expected to last 3 years). Access to ART has improved as a
result of price reductions and availability of generic formulations by MOH and NDA. Currently,
the end-user price of generics is about US$28 for a month of treatment using a generic three-drug
combination of stavudine, lamivudine, and nevirapine (Triomune). Over 15 companies are
subsidizing ART for their employees. Over 500 health workers (doctors, counselors, lab techs,
pharmacists and data personnel) have been trained by MoH, Academic Alliance, Mildmay and
JCRC. (Each of the regio nal hospitals and district hospitals has at least 2 trained doctors/clinician,
2-3 counselors, 1 lab person, 1 pharmacist trained in ART provision). Resource mobilization for
provision of ARVs countrywide has succeeded in securing support through MAP and GFATM. It
is expected that more than 40,000 clients will benefit from this scheme over the next three years.
The process of strengthening the logistics systems to ensure efficient delivery, storage and
security of ARVs has already been started with technical assistance from JSI/DELIVER.
Examples of ART Projects are given in Appendix 4.

Constraints: -

• Unavailability of free drugs to increase access to poor populations. ART is still too costly to be provided as part of the care package. • Inequity still exists because ART centers are located in towns and not yet in the lower • Need formal licensing of generic products by NDA and formal NDA recognition of combination products like Triomune. (A number of generic drugs have recently been approved and registered by the NDA including Triomune, Maxivir and Duovir). • There is a major lack of human resources. PHRplus found that there is a severe shortage of human resources, particularly laboratory technicians and counselors, for implementing a comprehensive ART program. Many preliminary plans for adding ARV capacity to existing centers assumes that existing staff will simply add these duties to their regular jobs, if drugs are provided. This is extremely unrealistic; many sites are already very understaffed, and many completely lack the trained staff needed for implementing an ART programme. Capacity building needs to be expanded. • Clinical infrastructure - there is lack of basic equipment in the districts that are considered by WHO to be "basic" to ARV care such as haemoglobin estimation and complete blood counts. Laboratory monitoring facilities are lacking in many districts • Support logistics - The current model of drug distribution to district facilities will not be adequate to support ARV programs. ARVs only work if the drug supply is extremely consistent. If facilities continually stock-out because supplies have not been picked or NMS does not have them, clients will be going on and off therapy and drug resistance will quickly develop. • The sites do not have enough storage facilities for ARV drugs (cannot stock too much • Systems for procurement (getting reliable sources of supplies), clearance, storage, distribution and management of commoditie s need further development. • Support supervision for ART is currently inadequate and quality control is not assured. • Monitoring and evaluation and good data collection are not yet fully developed • Paediatric AIDS ART care is still weak. Paediatric drug formulations are still inadequate. • Supplies for OIs are not reliable (only source is ACP). Many patients require OI • There is need to standardize the training curriculum for ART • Need to expand reliable HIV testing for adults and children to meet the needs for • Sustainability of ART programmes, strategies for adherence when ART drugs are distributed free of charge and criteria for free ART access are issues of ongoing public debate. 8. RECOMMENDATIONS:
Comments on Refined National Level Indicators for HIV/AIDS in Uganda (Care and
Treatment)

1. Percentage of people receiving palliative care in the last 12 months: There is no consensus in Uganda regarding the definition of palliative care. The TWG for care and treatment suggested using the WHO definition (see Appendix 5). The denominator (i.e. number of PHAs in need of palliative care is not exactly known).The proposed national serosurvey will provide estimates. 2. Number of PHAs who received psychosocial support in the last 12 months: This indicator is limited because psychosocial support is very broad. Currently there is no standard and technical definition of psychosocial support. For example, it is not clear whether the number and quality of counseling sessions would be used to define who has received counseling support. 3. Percentage of people with advanced HIV infection receiving ART: This indicator is feasible and the data could easily be collected if routine reporting is established; Vigilance in reporting would need to be stepped up. The proposed national serosurvey will provide better estimates of the denominator. 4. Percentage of health care facilities with the capacity to deliver care to PHAs: Good indicator but minimum standards need to be clearly defined.
Strategic priorities and interventions
As ART becomes more available, it is important that we maintain a comprehensive approach to
meet all the care needs of PHAs and their families. The TWG suggests that a revised NSF should
have a goal on care and treatment. Such a goal could be: “To increase and expand access to
comprehensive care and support for people living with and affected by HIV/AIDS”.

The following are the suggested objectives: -:

Objective 1:
To strengthen the infrastructure including laboratory services for the provision of comprehensive care for people with HIV/AIDS in each district within 5 years
Strategy 1:
Ensure that the physical infrastructure in every district meets the minimum requirements for the provision of comprehensive care of HIV/AIDS including ARV drugs as set out in the National Strategic Framework for the Expansion of Strategy 2:
Ensure uninterrupted supply of appropriate laboratory supplies, reagents and test
Infrastructure in district facilities is poor. To deliver ART care across the country, with equitable
access to all, will require a major effort to upgrade the health facilities and national healthcare
system. Specialised services for HIV care will need to be expanded including the establishment of
HIV clinics. Physical infrastructure needs to be remodeled to create room for enhanced HIV care
(creating counseling space, ARV drug storage etc.). The sites do not have enough storage
facilities for ARV drugs (cannot stock too much without risking expiry date of the drugs).
Laboratory monitoring facilities are lacking in many districts. There is a huge lack of basic
equipment in the Districts that are considered by WHO to be "basic" to ARV care. Although, not
all testing is essential to giving ARVs, and there is need to develop strategies to avoid many tests,
but the technical expertise and support services (maintenance and ordering of supplies) that
would be needed to support the basic equipment is not in place now. There is need to expand
reliable HIV testing for adults and children to support the scale -up of ART
Objective 2:
To build the human resource capacities at different levels of care to provide comprehensive HIV care and support (for adults and children) including use Strategy 1:
Ensure adequate staffing levels per district to provide comprehensive care Strategy 2:
Ensure the appropriate skills base to provide the comprehensive care and support services Strategy 3:
Build the capacity of communities to provide community-based HIV/AIDS care and support PHRplus found that there is a severe shortage of human resources, particularly laboratory technicians and counselors, for implementing a comprehensive ART program. To expand care and support in Uganda will include the recruitment of thousands of health professionals and a very large training programmes to ensure that nurses, doctors, laboratory technicians, counselors and other health workers have the knowledge and the skills to ensure safe, ethical and effective use of ARV medicines. All training will need to be standardized and should include equipping health workers with communication skills to handle issues of testing and disclsure. Training of
carers should involve the women and gir ls who care for PHAs at home.
Objective 3: Increase access to quality prevention and treatment of opportunistic infections

Strategy 1:
Ensure an uninterrupted supply if of appropriate drugs for the treatment of OIs and other related conditions Strategy 2:
Strategy 3:
To promote the development of herbal remedies and other complimentary treatment for HIV/AIDS Supplies of OI drugs are not reliable and stock outs are frequent. Guidelines on OI prophylaxis are not yet available. The training and care guidelines for adults and children need to be finalized and disseminated to all health facilities in order to standardize practice. TB should be addressed as a strategic activity on its own but well coordinated with other HIV care programmes. TB management needs to be strengthened in all Health Facilities and HIV/AIDS Service Organizations. There is need for surveillance for Multiple Drug Resistance TB (MDR-TB). Funding and technical expertise for scientific research to ascertain efficacy and safety of herbal remedies already tested on small scale needs to be identified. Strategies need to be identified to access more information to PHAs on the appropria te herbal remedies for opportunistic infections. Linkages and collaborations between all stakeholders dealing with care and treatment of PHAs need to be strengthened. Uganda AIDS Commission should be an advocate for the various care options that Ugandans are accessing. Objective 4:
Increase access to an Anti-Retro viral treatment from 10% to at least 50% of those who require it by 2005
Strategy 1:
Strategy 2:
Ensure availability of uninterrupted supply of ARVs Strategy 3:
Assess and accredit centres to provide ARVs needs Strategy 4:
Monitoring and evaluation of the ARV programme Strategy 5:
Ensure that all HCW have access to PEP and ART Guidelines for ARV treatment and care for adults and children need to be disseminated. As free drugs become available, strategies to ensure that they reach the rural poor should be made. Formal licensing of generic ARV products by NDA needs to happen. Need to identify strategies for procurement (getting reliable sources of supplies), clearance, storage, distribution and management of drugs and commodities. Support services for ART such as VCT and counseling need expansion. Support supervision and quality control for ART programmes will need strengthening. Monitoring and evaluation and good data collection will need to be developed. There is need to develop a system, which monitors the efficacy of drugs and drug reaction (pharmacovigilance). Research should focus on practical questions to better understand and improve the provision of ART. The focus on prevention must not be lost and should be integrated in the care services. The involvement of PHAs in ART treatment literacy campaigns should also be ensured Objective 5:
To provide more support to local NGOs/CBOs/FBOs involved in the provision of care to ensure that Community and Home-Based Care/ Palliative Care is available to at least 80% of the AIDS patients who need it
Strategy 1:
Standardise provision of HBC/palliative care Strategy 2:
Sensitize the communities on the available community and HBC services Strategy 3:
Mobilise and support communities involved in the provision of community- Policy frameworks for palliative care and home based care need to be developed. The capacity of all 56 districts should be built to enable provision of palliative care countrywide. At least each district should have a palliative care nurse. There is need to strengthen the capacity of doctors in the provision of oral morphine and to legislate for prescription of morphine by other HCWs.
Home Based Care needs to be scaled up in other districts. Regular monitoring and evaluation as
well as support supervision should be conducted. Linkages between Home Based Care and other
prevention, care and mitigation interventions (ART, PMTCT, Palliative Care, CB DOTS and
OVC Support) need to be strengthened. The capacity of selected HBC programs could also be
further strengthened and supervised to deliver drugs, especially ART, to patients or complement
the formal system to do this, making them more relevant to the patients' health needs.
To reinforce the provision of community care, a community training manual/guide should be
developed to assist NGOs/CBOs/FBOs to sensitize communities on options of care. In addition,
better coordination, increased funding and quality assurance of NGOs/CBOs and FBOs is needed.
Some community programmes need training in strategic planning, project proposal writing and
administration. The accountability system required of CBOs should be re-visited and made more
flexible. Integration of and cross referral between community organizations and health facilities
should be strengthened. Accreditation of care services should be considered.

Objective 6:

To ensure that there is a functional continuum of care between health facilities, home, community and other partners by the year 2006 Strategy 1:
Establish referral systems that link all HIV/AIDS service providers involved in Strategy 2:
Strengthen the referral systems within the health facilities and between different The referral system along the continuum of care for PHAs needs to be strengthened. Objective 7:
To ensure that pediatric AIDS care is expanded and linked to other services.
Lessons learned in the care of children include: 1)both the child and the care giver should receive
care 2) Care for HIV infected children goes beyond medical care and must include social support;
3) there is need for a good counseling service for HIV infected children.
Support services for children including counseling, nutrition and education need to be expanded.
Special skills in the counseling and communication with children should be emphasized. There is
need to support both HIV Infected and Affected children made vulnerable by HIV. Addressing
sexuality issues of infected children and adolescents (Sexually active infected children) and
disclosure issues of infected children are urgent needs. Young girls have a central role to play in
care and there is need for targeted interventions to meet their care needs. Palliative for children
needs further development and expansion. Paediatric drug formulations are still inadequate. There
is need to increase access to appropriate ARV drug formulations for children and to link PMTCT
programs with paediatric care. Infant feeding options for PMTCT need to be standardized.
Objective 8:

Expand IEC on care to reduce stigma and discrimination of PHAs and to increase HIV care seeking.
As part of enhanced and expanded care, there is need to establish a massive public education
campaign (including radio programs) so that patients will overcome stigma and seek care. This
will include the provision of all the necessary information about benefits as well as dangers of
usage of ART, to allow patients to make an informed choice.


APPENDIX 1: DOCUMENTS REVIEWED

MID TERM REVIEW OF THE NATIONAL STRATEGIC FRAMEWORK ON
HIV/AIDS:
CARE AND TREATMENT THEMATIC GROUP


1. 2nd Country Proposal to Global Fund 2. A Baseline Report on Monitoring and Evaluation Indicators of HIV/AIDS for Uganda 3. Antiretroviral Treatment Policy for Uganda: 2003 4. Assessment of Home Based care programs in Uganda (Havard Group) 5. Care for children infected and those affected by HIV/AIDS: A Handbook for Community 6. Care for children infected and those affected by HIV/AIDS: A Training Manual for 7. Country AIDS Policy Analysis Project: HIV/AIDS in Uganda 8. Evaluation Report on Palliative Care 9. Follow-up to the declaration of commitment on HIV/AIDS (UNGASS), Uganda country 10. Guidelines for handling of Class A Drugs 11. Guidelines on Management of Opportunistic Infections 12. Health Sector Strategic Plan Mid Term Review HIV/AIDS in Uganda: 2000/2 – 2005/6 13. Health Sector Strategic Plan: 2000/1-2004/5 14. HIV Care in Uganda: The Way Forward: 2000 15. HIV/AIDS Situational Analysis and Needs Assessment for the AIM Programme 16. Home Care Handbook: Supporting Primary Caregiver by Pathfinder 17. Mainstreaming HIV/AIDS issues into the poverty eradication action plan (PEAP) 18. Monitoring and Evaluation Indicators for National Strategic Framework on HIV/AIDS 19. Monitoring and Evaluation Plan of the Expanded National Response on HIV/AIDS in 20. National AIDS Policy, August 2003 21. National ARV Treatment and Care Guidelines for Adults and Children 22. National Guidelines for Implementation of Antiretroviral Therapy 23. National Health Policy 24. Refined National Level Indicators of HIV/AIDS in Uganda 25. Some Facts about Hospice Uganda: October 2003 26. Strengthening Palliative Care in Uganda (Proposal By Government of Uganda/MOH) To be executed by WHO between Jan 2003-Dec 2004 27. The National Drug Authority (Prescription & Supply of certain Narcotic Analgesic 28. The National Strategic Framework for Expansion of HIV/AIDS Care and Support in 29. The National Strategic Framework for HIV/AIDS Activities in Uganda: 2000/1-2005/6 30. Training Home Based Care Givers to take care of People Living with HIV/AIDS - By 31. Uganda Health Facilities Survey: 2002 32. UNAIDS: National AIDS Programmes - A Guide to Monitoring & Evaluation APPENDIX 2: KEY INFORMANTS LIST
MID TERM REVIEW OF THE NATIONAL STRATEGIC FRAMEWORK ON
HIV/AIDS: CARE AND TREATMENT THEMATIC GROUP

1. Dr. Ekiria Kikule, Executive Director, Hospice Africa – Uganda 2. Ms. Fatia Kiyange- Educational Administrator, Hospice Uganda 3. Dr. Emmanuel Luyirika, Director, Clinical Services, Mildmay Center 4. Dr. Zainab Akol, Senior Medical Officer, AIDS Control Programme 5. D r. Elizabeth Madraa, Programme Manager AIDS Control Programme 6. Dr. Maria Nanyonga , Coordinator, Nsambya Hospital Home Care Department 7. Kamwokya CBC Programme 8. Dr Grace Nambatya Kyeyune, Ag Director, Natural Chemotherapeutics Laboratory 9. Dr. Dorothy Balaba – Director, Traditional and Modern Healers Working Together 10. Dr. Apuuli Kihumuro, Director Uganda AIDS Commission (UAC) 11. Dr. Ester Aceng, National Professional Officer for HIV in WHO 12. Dr. Kirungi Wilfort, Senior Medical Offic er/Epidemiologist STD/AIDS Control 13. Mr. Twesigye Titus James Programme officer (information and documentation) UNASO 14. Dr. Dorothy Ochola, UNICEF 15. Mr. Dan Lukenge- AIC 16. Nagguru Teenage Information and Health Centre 17. Ms. Dorothy Nangwale -Oulanyah- UNICEF 18. Dr. Philippa Musoke, Head of Department, Paediatrics Mulago Paediatric Aids Clinic 19. Dr. Francis Adatu Programme Manager, NTLP 20. Dr. Joseph Kawuma, NTLP 21. Dr. Paul Waibale, Deputy Chief of Party, AIM 22. Dr. Rosemary Odeke, CDC 23. Dr. Peter Mugyenyi, Director Joint Clinical Research Center (JCRC) 24. Dr. Peter Solberg, CDC 25. Dr. Kagimu Magid – IMAU (Islamic Medical Association of Uganda) 26. Ms. Amy Cunningham HIV/AIDS Advisor, National – USAID 27. Dr. Elly .T. Katabira, Academic Alliance 28. Dr. Tom Barton, Creative Research Centre 29. Mr. Ronald Kamara, Catholic Secretariat, HIV/AIDS focal point 30. Ms.Lise Kaalund-Jorgensen, Counsellor-Development, Royal Danish Embassy 31. Ms. Justina Kihika Stroh, Programme Officer, Royal Danish Embassy (DANIDA) 32. Mr. Mugimba Edward, Assistant Commissioner/Focal Officer HIV/AIDS, MoGLSD 33. Ms. Rosi Mari Baro- Senior advisor social affairs (First Secretary), SIDA 34. Ms. Angella Spilsbury- HIV/AIDS Advisor, DFID 35. Ms. Catherine Barasa Asekenye- Technical Advisor-HIV/AIDS, MoE 36. Mr. Emmanuel Araali Kusemererwa- Senior Education Officer, MoE 37. Mr. Timothy Wakabi: HIV/AIDS Fellow 38. Mr. Ron Kamara- Uganda Catholic Secretariat (HIV/AIDS Focal person) APPENDIX 3 - KEY INFORMANT INTERVIEW GUIDE ON ANTIRETROVIRAL
THERAPY


MID TERM REVIEW OF THE NATIONAL STRATEGIC FRAMEWORK ON
HIV/AIDS:
CARE AND TREATMENT THEMATIC GROUP

The National Strategic Framework on HIV/AIDS is under Mid-term review. You have been
selected as a key informant to give input in this process. You are therefore requested to kindly
respond to the following questions and give any additional information you think will be useful to
the process of improving strategies in Care and treatment of HIV/AIDS.
What progress has been made in the area of Antiretroviral therapy in Uganda in general and what progress have you been able to make as an organization? (Accreditation of sites, monitoring and evaluation framework of existing initiatives, plan for scale up, equity, access, infrastructure development, capacity development, Advocacy, Policy, guidelines and lab.) What are the constraints you have experienced in implementation of Antiretroviral therapy programs? (Resources, any unforeseen bottle necks, Adherence and client follow up in the community, coordination, procurement of drugs and distribution) What gaps exist in the delivery of Antiretroviral therapy programs? (At various levels, infrastructure, human resource, support logistics and supplies, client unique identification and tracking) What would you describe as the achievements and best practices in your implementation of Antiretroviral Therapy? (Strategies that have contributed most to achievements made, Innovative and unique approaches at different levels) What would you highlight to be the priorities that should be considered in Antiretroviral therapy for 2004/5? (Activities that would yield highest impact in a year, areas that have already been started on and are critical for successful scale up) What are some of the emerging issues you know of in the area of Antiretroviral therapy? ( New issues that were previously not addressed)

NSF Activity on ARVs
Advocate for subsidy on ARVs with pharmaceutical companies, government and donors
Thank You


APPENDIX 4
Some ART Projects

• Eight thousand AIDS patients are treated by JCRC and its affiliated centers. The Joint clinical research Centre JCRC has a programme called (Timetable for Regional Expansion of ARV Therapy – TREAT). The TREAT programme is partnering with the MoH to increase access and build capacity for ART to at least 20 centers and work closely with all the currently accredited 30 sites and future ART accredited centers. • Médecins sans Frontières (MSF) also began importing generic ARVs manufactured by Cipla as part of the initiation of an ARV program in Arua, northwestern Uganda. This program enrolls about 20 new patents per month and provides the drugs free of charge. • In August 2003, a rural ARV distribution trial began enrolling participants in Tororo district under the auspices of the MOH and CDC. This three-year project features home visits by outreach personnel to monitor and support adherence, and will enroll 1,000 individuals. More than 300 clients now receiving free ARVs in this program, expanding to 1000 by March 2004. • In 2000, the Bank of Uganda began to offer ART at subsidized cost to its employees. As of July 2003, the Bank’s 82 employees on ART were paying 25 percent of drug costs and receiving a 100 percent subsidy for laboratory tests. At the African Air Rescue clinic, the Surgery, and the International Medical Center, about 100 people receive subsidies of up to 50 percent for ART from their employers, including the Bata Shoe Company, New Vision newspaper, U.N. agencies, Standard Chartered Bank, the Sheraton Hotel, and British American Tobacco. • The Uganda Cares program, supported by MOH, Government of Uganda, Uganda Business Coalition, and AIDS Healthcare Foundation, works with community-based organizations in Masaka to treat PLWHA with ART. In February 2003, Uganda Cares, which employs one physician and one nurse, was supporting 102 people (including 20 children) on ART. APPENDIX 5

Definition of Palliative Care

Palliative Care is an approach that improves the quality of life of patients and their
families facing the problems associated with life-threatening illness, through the
prevention and relief of suffering by means of early identification and impeccable
assessment and treatment of pain and other problems, physical, psychosocial and
spiritual.
Palliative Care:
Provides relief from pain and other distressing symptoms; Affirms life and regards dying as a normal process; Intends neither to hasten or postpone death; Offers a support system to help patients live as actively as possible until death; Offers a support system to help the family cope during the patient's illness and in their own bereavement; Uses a team approach to address the needs of patients and families, including bereavement counseling, if indicated; Will enhance quality of life, and may also positively influence the course of illness; Is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications. Sepulveda C, Marlin A, Yoshida T and Ullrich A. Palliative care: The World Health Organization's Global Perspective. Journal of Pain and Symptom Management 2002; 24 (2): 91- 96. Table 1: National Strategic Framework: Progress to Date
GOAL II: TO MITIGATE THE HEALTH AND SOCIO – ECONOMIC EFFECTS OF HIV/AIDS AT THE INDIVIDUAL, HOUSEHOLD AND COMMUNITY
Objective 1: To promote AIDS care, social support and protection of rights of PHAs and affected individuals and families
Outcome: By the year 2005/6, at least 50% will have access to HIV/AIDS counseling, care social support and other essential package services including health, education and
Foods
Strategies
Activities
Indicators
Progress towards each activity
Progress towards each strategy
and comments

Strategy 1:
initiating community activities (eg. Mildmay, • UAC & AMREF have a comprehensive list of 750 listed), UNASO has a list of approx. 500. • There are examples of replication of viable projects but prior feasibility studies are not done • AIM has provided 109 grants to NGOs, CBOs • UACP (supports 30 districts) has approved 1934 funding, 791 have been funded. Capacity for the CHAIs needs strengthening. 170 CSOs are being recruited to provide support supervision of the • Some NGOs are not registered with UAC though they may be registered with MOH, other sectors or NGO Board. CBOs are registered at district • Contacted the following organizations: - i) Islamic Medical Association of Uganda • There is considerable sensitization to communities. Numbers are difficult to establish. An Inter-Religious Council links FBOs together. IMAU has sensitized about 1000 Imams & other Some impact indicators should be included. • Religious and cultural institutions have active counseling services through religious and AIDS care services in their affiliated hospitals • Some have outreach care services (Mbuya Reach • There is need for a standard community care/training manual for use by FBOs. Currently, an HBC & Paediatric manual already exists. Strategy 2:
The indicator is not clear. It also has ethical implications in terms of confidentiality and • The capacity to provide palliative care has been greatly strengthened by MOH, Hospice and Mildmay through training and service provision. Limited integration into existing health services training that has a module on palliative Training Guidelines for Community Volunteers languages) but not yet distributed at community • There are different curricula (Hospice/Mildmay) that have been developed by NGOs though these need to be standardized. MoE not involved • integrated in medical schools and nursing schools. Integration in other programs such as Allied Health Programmes, Counselors etc. needs to occur. MoE has not been involved directly • Thousands of health care providers, teachers, religious leaders and community workers have To date, Hospice has trained a total of 1,090 health professionals and 531 non - health professionals. Mildmay has trained over 2000 • Although tens of thousands of PHAs may have received palliative care. The actual number depends on the definition used. • TASO conducts refresher courses for the community AIDS counselors (Thematic Group 3 to get more details) • There are several examples of NGOs that sensitize communities on care in general. • MoH/Hospice have introduced palliative care • Mildmay (Jjaja’s Home ) provides mobile care for children in three districts (Mbarara, Luweero Community and TASO conduct outreach clinics. • Kitovu mobile have 124 outreach points in 3 • NGOs conduct institutional support supervision MoH last did HBC support supervision in 2000; plans conduct HBC support supervision in • Generally support supervision is limited Strategy 3:
Guidelines developed and in advanced stage; In the ARV Policy, there are PEP guidelines, Many Health Providers give prophylaxis for OIs. Policy on OIs still in developmental stages. Proportion of PHAs receiving prophylaxis is not OI treatment is expensive and drug supply limited • There are financial barriers to procurement of Stock outs are very common in health facilities • Free fluconazole is available at most health appropriate herbal treatment is not known. THETA surveys indicate that 60% of people report use of herbal medicines when they are ill. However, there is some progress in this area (see • Aroma therapy is available at TASO & Mildmay • This Indicator is difficult to measure • Lab diagnosis of OIs is a big problem • OI Treatment is expensive and still limited. • THETA has mobilized & trained over 1000 traditional healers over the last 10 years. Traditional healers in turn sensitise their clients & communities about HIV care. At JCRC HAART costs: US $12,00 in 1996, US $400 in 2000 and US $28 in 2003. considerable reduction in ARV drug prices • There is a good description of the referral framework but the referral system is weak due to reasons like poverty, transport costs, lack of services at the referral centers • IMCI referral report (1999/2000) showed that 10% of kids needed referral and of those 29% of caregivers that were referred actually complied and went to the destination of referral. Strategy 4:
SCF(UK) has done a needs assessment for children infected and affected by HIV/AIDS in Arua and Creative Research Centre is compiling a data base on children infected and affected by HIV/AIDS. • No country specific guidelines for nursing care for children infected and affected by HIV/AIDS • NGO’s have adopted the WHO Guidelines on cancer, pain relief and palliative care in children Save the Children Fund UK developed Training Manual and Handbook for Community Health Workers entitled “ Care of Children infected and counseling for children & utilizing it affected by HIV/AIDS” These materials were launched and plans are underway to translate Mildmay has some training manuals on palliative Limited information available on number of Naguru Teenage and Information Centre &, children/adolescents (10-24 years). They do Mildmay training includes palliative care for DESCRIPTION OF THE TECHNICAL WORKING GROUP 2: Care and Treatment
NamaleA@cdcuganda.org & akn0@cdcuganda.org

Source: http://uac.go.ug/pdf/Annex_2_TWG_2_Report.pdf

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