Support to PLHIV community development

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Support to PLHIV community development

• Nurali Amanzholov
• PLHIV Kazakhstan Union

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Introduction

• HIV is a condition requiring life-long treatment,
  care, and support.
• Effective provision of a continuum of care
  services must include the following basic
  components
• wide range of quality medical services,
• legal and social care and support,
• strong PLHIV organizations, and
• effective interaction between medical
  institutions and civil society organizations.

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Situation in the Central Asia Region

• Number of PLHIV has increased during the last
  several years in the region. According to UNAIDS
  data for 2008, the estimated number of PLHIV is
  40,000 in four countries.
• Involvement of NGOs in PLHIV support services is
  rather low 9 NGOs in KZ, 13 in KG 4 in TJ, no
  working NGOs in UZ but several initiative groups.
  Mostly, NGOs work in the large cities.
• There is no developed interaction mechanism
  between medical and other governmental
  organizations and PLHIV NGOs.

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Research background

• To assess and develop the PLHIV Network, a
  consultant examined all appropriate documents and
  conducted meetings in four countries with
• Staff and heads of PLHIV NGOs and other NGOs
• Initiative groups and leaders of PLHIV
• Representatives and employees of the key partner
  organizations (government entities, international
  experts, donor organizations, and projects)
• The consultant also interviewed more than 100
  people in 10 cities of 4 CA countries.
• This assessment was conducted with financial and
  technical assistance from the CAPACITY Project.

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Local training for PLWA NGOs

• To build capacity for conducting needs
  assessments
• Multiple mini-workshops for staff of PLHIV NGOs
  and PLHIV activists were held
• Participants then applied their new skills to do
  practical data collection assignments on
• PLHIV needs
• Existing services

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Results

• Prevention services are less accessible for MSM,
  women, and for PLHIV residing in rural areas
• Social, psychological support, and narcological
  services are very limited
• Most financial and technical resources are from
  international agencies
• Most PLHIV NGOs and initiative groups are new and
  appeared during the last 1-2 years
• All PLHIV NGOs collaborate at the local level
• Only some PLHIV NGOs collaborate with medical and
  social facilities at the national level

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Results

• Almost all PLHIV NGOs have small rented offices
• Computers and other equipment are mostly outdated
• 130 PLHIV are paid, and between January 2008 and
  April 2009 they provided support for 3,000 PLHIV
• All PLHIV NGOs are leader-driven
• Only one PLHIV NGO, Kazakhstan Union of
  HIV-positive persons, has any experience of
  sub-grant management
• None of PLHIV NGOs has experience managing
  long-term (two or more years) programs
• None of the PLHIV NGOs has its own monitoring and
  evaluation system for monitoring their work and
  based on the NGOs needs rather than on the
  requirements of donors

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Results

• Only a few PLHIV NGOs carried out strategic
  planning and have regulations for internal
  management and coordination and external
  partnership relations
• None of the PLHIV NGOs have developed staff and
  volunteer capacity building plans
• None of the PLHIV NGOs have regulations for
  attracting PLHIV to become staff

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Results

• All PLHIV NGOs have capacity to be involved in
  decision-making but also have the following
  obstacles
• Lack of coordinated priorities and efficient
  approaches for the development of assistance and
  support to PLHIV
• Elusive mechanisms of legitimate representation
  at the national, regional, and international
  levels except by the Kazakhstan Union of PLHIV
  in Kazakhstan
• Elusive communication links among partners,
  including the methods for conflict resolution
• Insufficient experience in organization of stable
  voluntary programs to involve PLHIV
• Lack of steady and efficient external support
  from the local leaders of PLHIV community

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Conclusion and recommendations

• 1) PLHIV NGOs provide social support to the most
  socially vulnerable HIV-infected people and their
  families. These NGOs are capable of acting as
  potential partners of government and
  international organizations and helping to
  provide universal access to HIV prevention,
  treatment, assistance, and support. NGOs must
  have clear and coordinated policy and plans for
  the future development.
• 2) PLHIV NGOs - just like the PLHIV community -
  are rather inexperienced and are going through
  the initial development stage. All of these NGOs
  are leader-driven organizations, thus, the
  support of PLHIV leaders is crucial for further
  development of PLHIV NGOs, the increase in their
  capacity to provide assistance to PLHIV, and the
  consolidation of the PLHIV community.

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Conclusion and recommendations

• 3) PLHIV NGOs are carrying out their activities
  on the local level. Many significant decisions
  are adopted at the national and regional levels,
  however, in order to get involved in the
  decision-making process, PLHIV NGOs have to
  establish networking unions on national and
  regional levels that follow the principles of
  transparency, coordination, and democratic
  selection of representatives from each
  organization/country.
• 4) Today, international organizations and local
  government entities act as the principal partners
  of PLHIV NGOs. To advance PLHIV NGOs, it is
  necessary to stimulate the development of
  partnerships with government entities, as well as
  with other NGOs which have been set up by other
  communities dealing with the same problems, such
  as HIV-infection proliferation.

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Conclusion and recommendations

• 5) The financial resources which are being
  utilized by PLHIV NGOs are provided by
  international organizations. That is why the
  activities of PLHIV NGOs cannot be characterized
  as stable. In some cases, the activities do not
  even correspond to the priorities of PLHIV. With
  the purpose of ensuring a stable operation and a
  more accurate consideration of the requirements
  of the community, the PLHIV NGOs must utilize
  resources which are available inside their
  community by creating conditions which will
  promote the mutual support of their members. It
  is also important to encourage a wider
  involvement of PLHIV into the decision-making
  process and implementation of programs on local,
  national, and regional levels.

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Essential package of prevention care and support
services to PLHIV

• According to the assessment results, the
  following essential package of services, was
  developed
• Treatment related services
• Prevention services
• Social care and support and work on reducing
  stigma and discrimination

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Treatment related services

• Counseling and referral to TB diagnosis and
  treatment services, including social support to
  improve adherence to TB treatment and
  prophylactic treatment
• Counseling and social support to improve ARVT
  uptake and adherence
• Accessibility of medical care (surgeon, dentist,
  gynecologist, psychotherapist)
• Counseling and referral to opportunistic
  infections treatment and prevention services.

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Prevention services for PLHIV

• VCT services for partners (including sexual and
  injecting partners)
• Counseling and referral to PMTCT services
• Prevention counseling to reduce the risk of HIV
  transmission and re-infection (both through
  sexual and injection behaviors)
• Prevention counseling to prevent STI and
  hepatitis and referral to STI and hepatitis
  treatment
• Opioid substitution therapy
• Provision of individual means of protection

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Social care and support and decreasing stigma and
discrimination

• Peer-to-peer support groups
• Leadership development for people living with
  HIV/AIDS
• Legal services
• Anonymous phone counseling (hotline)
• Advocacy to decrease stigma and discrimination
• Work with mass media

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Regional training

• The CAPACITY Project organized a regional
  training in Almaty for 25 PLHIV NGOs working in
  CA. The purpose was to improve PLHIV services
  quality and it included
• Discussion of the current PLHIV treatment and
  support service provision
• Discussion and finalization of essential package
  of services for PLHIV
• Development of an implementation plan for
  treatment and support services for each NGO
• Following the regional training, country-level
  trainings for PLHIV NGOs were conducted, where
  the essential package of services was discussed
  and approved.

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Central Asia PLHIV Network

• KZ PLHIV Union initiated creation of the Regional
  PLHIV Central Asia Network to
• Strengthen the capacity of PLHIV NGOs
• Provide the universal access for PLHIV to
  prevention, treatment, care, and support services
  
• Widen the involvement of PLHIV in the
  decision-making of national and local AIDS
  responses
• Assist PLHIV through rights-based advocacy
• Decrease stigma and discrimination

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Future plans

• Development of the Central Asia PLHIV Network
• Development of the ME system
• Support PLHIV initiative groups
• NGOs capacity building for registration,
  strategic planning, policies, procedures, and
  program documents
• Strengthening partnerships with governmental,
  non-governmental, and international organizations

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Future plans

• Development and implementation of the clients
  requirements and services quality monitoring
  system in KZ and CA
• PLHIV involvement in intervention assessment
• Providing technical support to NGOs in conducting
  national HIV and AIDS trainings
• Conducting the Regional Training on Gender and
  HIV/AIDS
• Organizing and conducting the first KZ PLHIV
  Congress

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• Thank you!