Summary of PEPFAR State of Program Area (SOPA):
Care & Support
Prepared by E. Michael Reyes, MD, MPH
(Original SOPA is a 45 page document)
Introduction:
“Care and Support refers to the broad array of non-ART services (clinical,
psychological, social, spiritual and preventive) that may be offered to HIV-infected
and affected individuals under PEPFAR.”
Program Area Overview:
Key elements of a strong care and support program are interventions that lead to:
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Early identification of HIV-infected persons, referral and retention in care.
Reduction of HIV-related morbidity and mortality
o Provision of cotrimoxazole (CTX) prophylaxis
o Screening for and management of TB
o Nutrition assessment support
o Interventions to improve water, sanitation and hygiene (WaSH)
o Malaria prevention
o Cervical cancer screening
o Diagnosis and management of cryptococcal disease
Improved quality of life
o Pain management
o Implementation of a palliative care approach
Reduction of transmission of HIV infection from HIV-infected to uninfected
persons
o Reference PwP SOPA
Each of the above program elements is/should be supported within a framework of key
cross cutting considerations, including the need to:
1. Support services that are evidence-based, reflect appropriate prioritization of
scarce resources, and are supported by international/national guidelines.
2. Expand coverage and provide services equitably, both with respect to geography
and target populations.
3. Appropriately adapt the package of services to national and local situations and
target populations.
4. Support services within the context of sustainable improvement in health systems.
5. The need to improve quality of programs, and
6. The need for appropriate monitoring and evaluation.
The SOPA contains
Table 1A: Current Status of Key Program Elements (linked to 4 bullets above)
Table 1B: Summary Information about Current Status of Key Cross-Cutting Elements
(linked to 6 elements above)
Promising Practices (PP), Lessons Learned (LL), Challenges/Emerging Issues (EI)
and Future Directions
Presented in extensive Table 2A by Program Element.
Highlights include:
Program Element
1. Identification of
persons with HIV, link to
service, retention in care
PP/LL
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2. Reduction of HIVrelated morbidity and
mortality
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Cotrimoxazole
Challenges/EI
Home testing programs in Uganda
High rates of retention in settings with
close community follow-up (Kenya,
Uganda)
Reduced barriers to access via
decentralization of services, evening
and weekend service hours,
coordinating care for multiple family
members
Collaborative efforts to quantify
national cotrimoxazole needs
(Namibia, Mozambique)
Home-based testing with direct
linkage to CTX prescription (Uganda,
Kenya)
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Nutrition
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Assessment of workflow in care
clinics as it relates to implementation
of nutritional assessment, counseling
and support
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Water, Sanitation and
Hygiene (WaSH)
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Promotion of safe water, sanitation
and hygiene in home based care.
Integration of safe water interventions
in clinical settings
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Cervical Cancer
Screening
Zambia experience with cervical cancer
screening:
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Education about cervical cancer,
importance of screening
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Training nurses to conduct cervical
exams
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Models make use of internet
technology to allow for consultation
with experts in rural settings
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Novel approaches to QA including use
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Most people don’t know their
HIV status;
Cost, inconvenience, stigma
and lack of understanding of
benefits of care
Limited information on
interventions to improve
referral and retention in
different cultures
Rates of effective referral and
retention are rarely measured
Lack of understanding of
CTX importance by patients
and providers
Quantification challenges
because CTX is not just used
for prophylaxis.
Concerns regarding locally
manufactured products
Limited availability of job
aids, specifically dosing tools
for children
Challenge of adding nutrition
assessment and
responsibilities to
overstretched health care
workers
No well developed systems
for monitoring quality of
nutrition activities
Not all countries recognize
importance of water,
sanitation and hygiene
services
Not all countries have access
to proper commodities for
WaSH interventions
There is a relative lack of
training materials related to
good hygiene practices
Current international
guidelines call for PAP smear
approaches to screening
(impractical)
Lack of knowledge about
promising single visit
approaches
Gaps in evidence regarding
effectiveness of screen and
treat approaches in women
Future Directions
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Expand efforts to address
identified barriers in
individual care settings
Gather in additional
information on
interventions that improve
linkage to and retention in
care
Consider PHE to address
retention in care
Support additional national
CTX quantification efforts
Continued advocacy for
CTX via training
programs, workshops with
target audience of both
providers and recipients
SI and program working
closely to develop
strategies to track and
report provision of CTX
Support continued
development of food by
prescription programs
Support expansion of
nutritional assessment and
counseling in all programs,
regardless of food
provision.
Specifically promote hand
washing with soap
Develop and implement
tools for assessment of
needs related to WaSH at
household and community
levels
Develop improved training
materials and job aids for
home based care workers
and clinicians.
Educate about/advocate for
single visit screening
approaches
Support efforts to
coordinate stakeholders in
each country
Support study tours and
country-to-country
exchange
Ensure that pilot programs
of digital photography
Cryptococcal Disease
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Training in cryptococcal diagnosis,
development of lab SOPs
(Mozambique)
Pfizer donation program makes a key
treatment drug, fluconazole, available
to countries.
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3. Improved Quality of
Life
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Pain Assessment
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Palliative Care Approach
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Regional meetings in Rwanda and
Namibia have been useful in
promoting pain assessment; have led
to identification of point people in
ministries.
In Uganda, focused advocacy has led
to establishment of comprehensive
pain management services in some
settings.
Uganda, Zimbabwe, South Africa,
Tanzania models for comprehensive,
facility-based HIV/AIDS palliative
care sites offering community level
home based care services
Model palliative care curriculum (preservice and in-service) as well as
distance based diplomas has been
developed in South Africa.
Development of a pocket guide for the
delivery of comprehensive palliative
care services in HIV clinic settings
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4. Reduction of
transmission (PwP)
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A number of behavior change
interventions, based in the US, have
demonstrated impact on reducing high
risk behavior; intervention and tools
being adapted in PEPFAR countries.
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with HIV
Gaps in human capacity,
commodities needed for
screening and management of
women with advanced disease
Lack of commodities and
human capacity to diagnose
cryptococcal disease
Limited training materials
Optimal approach to
supporting training in
cryptococcal diagnosis is
unclear
Mortality is high; need to
develop approaches to earlier
recognition
Ongoing need for advocacy;
identification of point
persons; development of
national policies
Need for monitoring systems
to see whether pain
assessment is being done.
Expanding the number of
specialty palliative care
providers in current PEPFAR
countries
Integration of palliative care
services and providers into
generalized HIV care and
treatment programs.
Integrating a “quality of care”
approach within standard
medical and nursing school
curriculum
Lack of pediatric trained
palliative care providers
Interventions to date target
clinical settings; HIV
transmission occurs during all
stages of HIV
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have adequate quality
assurance efforts
Support more structured
evaluation due to limited
data on cervical cancer in
women with HIV in
developing countries
Care and Support TWG
working with Lab TWG to
review, develop and adapt
appropriate training
materials
Further training in lab
capacity
Assist countries with
documentation of disease
burden
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Continue supporting and
developing policies related
to opioid administration.
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Improved delivery of
palliative care services
among IDUs requiring
opioid access for pain and
addiction/recovery
Improved integration of
mental health services and
providers within palliative
care programs.
Establishment of pediatric
palliative care models and
training institutions/sites.
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Discussed in PwP SOPA
Presented in extensive Table 2B by Cross Cutting Issues.
Cross Cutting Issue
1. Evidence based
services
PP/LL
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Challenges/EI
Costing exercises
Portfolio reviews at country level
Collaborations with WHO on
guideline development
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Lacking information about
how best to package and
prioritize these interventions
to have maximum impact
WHO requires a time
consuming approach to
guideline development
without; lacks key resources
to support this.
Assessing multiple services
cost per client is challenging.
Future Directions
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Continue to collaborate
with WHO/country
programs/MOHs to
develop guidelines for
specific complications of
HIV
Need further cost exercises
to establish more costeffective approaches to
providing care services.
More country-to-country
sharing related to
prioritization, adaptation,
dissemination and
implementation of
guidelines.
2. Expand coverage and
provide services
equitably
3. Adapt the package of
services to national and
local situations
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Access to services has expanded
rapidly
Mapping of services in relation to
need and careful regional assignment
of partner responsibilities have
improved equity
WHO Operations Manual in
development for primary care centers
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4. Support services
within the context of
sustainable improvement
in health systems
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5. Need to improve
quality of program
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6. Need for appropriate
monitoring and
evaluation
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Key Health Systems Strengthening
Elements: assuring adequate numbers
of competent health care workers;
functional “network models”; and
reliable sources of commodities.
Human capacity has increased
tremendously through a variety of
training approaches
Overall capacity of local institutions
has been expanded substantially
(Ministries, NGOs/CBOs).
Mapping of home based care
programs in the catchment areas of
health facilities
Multiple examples of effective
approaches to improving quality
services—including training, support
for commodity provision
CQI activities have been incorporated
into many programs.
Hot or warmline access to expert HIV
providers to assist in rural areas
(Zambia)
Performance-based financing as a
promising approach to service
provision (Rwanda)
Approaches to disaggregating persons
receiving care and support according
to HIV status (e.g. Nigeria, South
Africa)
Where service providers overlap,
monitoring partners have developed
approaches to “de-duplication” of
program results.
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Limited resources limit ability
to achieve universal access.
Challenges of linkage
to/retention in care limit
ability to ensure service
delivery
Cultural barriers to achieving
gender equity in services
access
Knowledge gaps about how
to optimally prioritize and
package interventions.
Large knowledge gaps about
packages of appropriate
interventions for specific
target groups including
children, adolescents,
pregnant women, and
MARPs.
Resource limitations still
constrain progress
Development of effective
network models is limited by
weak communications
infrastructure, limited
resources for transportation
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Constraints of time, resources
and health care worker
shortages
Few care and support
programs have integrated
quality assessment
components or CQI activities
Data regarding program
performance may not be
returned to programs to
support improvements.
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Lack of ability to
disaggregate program results
by HIV status hampers ability
to assess coverage, equity,
etc.
Lack of unique identifiers,
common names, and use of
different names at different
times make it challenging to
de-duplicate program results.
Technical Working Group has
not been able to conduct
systematic assessments of all
country programs beyond
COP reviews; lacks human
capacity to make visits to all
countries.
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Mapping of available
services in relation to need
Use of geographic data for
program planning
Disaggregation of program
results by age
Continue to support
countries to adapt
interventions based on
epidemiologic data
Conduct evaluation of
adapted packages
Adapt and implement
WHO Operations Manual
in different countries
Facilitate sharing of
country experiences
Support development of
country-level strategies to
improve pre-service
training and
implementation of task
shifting
Support efforts to improve
planning and coordination
activities between local
government, HIV
treatment and care facility
sites and community and
home based care providers
at the district levels
Provide guidance to
countries that outlines a
comprehensive approach to
quality assessment and
improvement, including
activities such as case
observation, supportive
supervision, clinical
mentoring, HIVQUAL,
performance-based
financing and ongoing
training of health care and
community providers.
Standardize criteria for
counting both HIVinfected and HIV-affected
persons receiving care
New PEPFAR II indicators
will be helpful re: separate
reporting of HIV-infected
and HIV-affected persons
receiving care—reducing
duplicate counting.
Work more closely with
Strategic Information—
both at HQ and in the field.
Apply an already
developed standardized
tool to assess progress in
care and support at the
country level.
Prioritize areas for
program evaluation and
possibly develop protocols,
which can be adapted by
countries.
Future Directions: Areas of Emphasis for 2009
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Very highest priority interventions
o Enrollment and retention in care
o Provision of cotrimoxazole
o Assessment and management of pain
o Screening and 3 services covered by other SOPAs: screening/treatment of
TB, assessment, management of nutrition, and prevention of onward
transmission of HIV.
Highest priority target populations:
o General HIV infected population
o Need for continued focus on special services for women, pregnant women
and children
o Need to develop services for other special populations (e.g. adolescents,
Most At Risk Population groups)
As PEPFAR resources level off, may be need for more emphasis on care and
support interventions;
Continued focus on health systems strengthening and transition to local partners;
this includes development of partnership frameworks
Transition to virtual technical assistance (rather than in-person TA)
The SOPA includes no reference citations.