Community
based service
delivery, essential
for achieving
…anything !
SUSA28 18.30-20.30
Wednesday 23rd
Clarendon Room
Julian Hows
Positive, Health , Dignity and
Prevention
Who are we ?
Under the theme of Reclaiming Our Lives!
GNP+ implements an evidence-informed (advocacy) programme focused on:
•Empowerment;
•Human Rights;
•Positive Health, Dignity and Prevention; and
•Sexual and Reproductive Health and Rights of people living with HIV.
within the framework of Positive Health Dignity Prevention
Along side other partner PLHIV networks and others
A vital partnership ....
But …
There is no US without me
- partnership
There is no ME without you
- support ,care, and especially access to treatment
There is no YOU
- without each individual in your movement showing your
humanity and acting upon it and working with us
5
Values and principles that underpin the
approach
1 "We are people not patients or ‘beneficiaries’ of care ”
We must be involved in design, implementation, monitoring
and evaluation of programmes and policies affecting us.
2 "We are people not vectors of transmission”
A human rights approach goes alongside but is so much wider
than a medical model.
3 "We are people not scapegoats”
Preventing HIV transmission is a shared responsibility of all
individuals irrespective of HIV status.
4 ‘We are people with needs and desires’
Sexual and reproductive health and rights must be recognised
and exercised by everyone regardless of HIV status.
What is the prize for being so radical in our
approach ?
A massive scale-up in people knowing their status helps
‘normalise’ responses to HIV in the community can:
- reduce stigma and discrimination toward PLHIV
- inform, educate, and support prevention efforts for all
- mobilise resources to where they are most needed because of good
evidence
Support the Treatment 2015 and beyond targets
But most importantly, once again, bringing communities and people to the
front and centre of the response …because whatever this cruel virus is
about it is about people…
7
Positive Health, Dignity and
Prevention
• Shifting from laying blame on HIV-positive
people
• Moving beyond focusing on onward
transmission of HIV
• Supporting people living with HIV to gain
control over their lives and health
• Emphasising direct link between HIV
prevention, treatment, care and support
History – Part 1
• Long history of HIV prevention aimed at
people who know their HIV status
• Messages that people living with HIV have
heard:
‘HIV-positive people are guilty’
‘Positive people should not have sex’
‘Use condoms or go to prison’
‘HIV-positive women cannot have children’
Components
•
•
•
•
•
•
•
•
Health promotion and access
Sexual and reproductive health and rights
Prevention of transmission
Human rights, including stigma and discrimination
reduction
Gender equality
Social and economic support
Empowerment
Measuring impact
Why is this discussion
important?
Some examples
• 85 countries have laws around non-disclosure of HIVpositive status to sexual partners where there is a
risk of transmission, exposure and transmission
• Treatment as Prevention must show primary benefit
for PLHIV – in an ethical way
• A human rights approach is essential to ensure that
the needs of people living with HIV are not
subsumed by public health goals.
GNP+ How we work –
using the Leadership through accountability
programme as a FRAMEWORK
• 11 countries , 2 years, 5 research tools led
by PLHIV to inform a joint PLHIV and civil
society advocacy campaign
• Underpinned and drove community
informed service provision models
• As well as building the capacity of all
Relevance of LTA programme
http://www.hivleadership.org/
Cameroon
Ethiopia
Kenya
Indonesia
Malawi
Moldova
Nigeria
South Africa
Senegal
Tanzania
Zambia
Reflections from evaluation
• Crazy programme design set to fail:
– Select feeble PLHIV networks and fragmented CSO to force
a great idea on them
– Expect results after 24 months with practically all work to
be done by themselves
– Strangulate them with strictest demands on reporting
(…and support them)
– Result:
• for £1 per PLHIV you change the lives of 4.7m people in 10
countries
We are in a state of emergency!
If we don’t act now new infections will rise; we will never achieve
“universal access”, “get to zero” or “end AIDS”.
Over three decades into this epidemic:
we are angry that still 4500 of us are dying of AIDSrelated illnesses every day. People without access
to treatment die!
Relevance of LTA programme II
100%
90%
80%
70%
no answer
60%
Irrelevant
50%
Less relevant
40%
Average
Relevant
30%
Highly relevant
20%
10%
0%
Needs of final Priorities at
beneficiaires national level
DFID
GNP+
WACI
PLHIV
networks
CSO
“The LTA programme provided skills required for PLHIV to put their cases across with
evidence. Politicians can’t paint a rosy picture any more. They need to face the facts!”
Source: LTA programme implementers, Malawi
Value for money
Source: GNP+, 2013: LTA programme VfM guide
Ukuthwala, Eastern Cape
• Up to 20 underage girls are now safe from abductions for
forced marriage and fabled HIV cure
• Compared to the pre 2010 baselines, up to 200 girls will be
saved over the next 10 years.
• This amounts to a cost of GBP: 44.38 per saved girl with a
right to education and to healthy living
• Since December 2011 no more forced marriages are reported
and 12 abductors have been arrested in the Lusikisiki area of
the Eastern Cape province of South Africa.
Malawi: phasing out of ART
“Triomune” containing D4T
• 450,000 PLHIV on ART “Triomune” containing
d4T, responsible for at times severe side
effects
• At a country programme cost of £149,222, the
UK taxpayer spent £0.33 per person to make
government accountable and push for the
acceleration of the phase out of ART
“Triomune”
50 pieces of research in 10
countries
Changes in access to services and quality of treatment for 633,352 People
living with HIV
• Cameroon: phasing out of Stavudine (d4T) - Number of beneficiaries on
ART: 89,000
• Malawi: phase out of Stavudine (d4T) as a therapy option - Number of
beneficiaries on ART: 450,000
• Ethiopia: 380 case managers have been recruited for health education to
PLHIV/access services/treatment registration - Number of beneficiaries
380x200= min. 76,000 beneficiaries
• Senegal: health spending reduction of six per cent reversed - Number of
beneficiaries on ART: 18,352
50 pieces of research in 10
countries
• Changes in policy environment impacting on 4,080,000 People living with
HIV
• Nigeria: passing of draft law of the “Anti-discrimination Bill” after 8 years.
Criminalisation clauses were removed and in addition the scope was
expanded to cover the workplace, schools, correctional institutions,
religious institutions and society at large - Number of beneficiaries:
3,100,000 PLHIV
• Zambia: PLHIV provided inputs on Zambia’s Anti-discrimination Act: antidiscrimination is now included in draft constitution for the first time Number of beneficiaries: 980,000 PLHIV
50 pieces of research in 10
countries
• Taking the overall programme costs and
dividing them by the number of beneficiaries
with access to services and quality of
treatment (633,352), the cost per person
living with HIV amounts to £6.47.
• The cost for changes in policy environment
impacting on 4,080,000 People (see section
5.3) living with HIV costs the UK tax-payer £1
per person.
LTA impact: rights owner
100%
90%
80%
70%
60%
n/a
Very low
50%
Low
40%
Average
High
30%
Very high
20%
10%
0%
Impact on intended
target group
Impact on
unintended groups
Awareness of
Attitude of
Action of
Difference to lives of
beneficiaries about beneficiaries to claim beneficiaries to claim
beneficiaries
their rights
their rights
their rights
LTA impact: duty bearer
100%
90%
80%
70%
60%
n/a
50%
Very low
40%
Low
Average
30%
High
20%
Very high
10%
0%
Gov. officials aware of Gov. officials attitude Gov. officials action in
their obligations
of fulfilling their
fulfilling their
towards PLHIV
obligations towards
obligations towards
PLHIV
PLHIV
Government/
parliament action in
drafting/amending
non-discriminatory
legislation
Government/
parliament action in
passing nondiscriminatory
legislation
Had the LTA never existed…what would have happened to
PLHIV, their networks networks and CS?
•
•
•
•
•
Civil Society uncoordinated and PLHIV working in isolation.
Without a systematic approach to advocacy, proliferated messages lacking
evidence would be of little interest to the media and barely heard by
decision-makers.
Stigma and discrimination would be less prioritised and felt even harder at
the community level.
16.000 PLHIV would not have benefitted from an active engagement in
research and would lack empowerment.
Less access to services, justice and changes in the enabling environment
for 4.7m PLHIV in 10 countries
PLHIV Contributions to National Policy
National Policy
SANAC announced meaningful representation of PLHV in all structures, including woman living with HIV as Deputy President
RNP+ formed a key partnership with a group of women lawyers. The partnership has helped RNP+ better address women’s issues and
has also assisted the group with training, data analysis and report and policy writing.
As a result of NEPHAK’s work to document experiences of PLHIV in the Stigma Index, GIPA Report Card, Global Criminalisation Scan, and
Advancing the SRR of PLHIV, the organization now occupies a central role in the Kenyan National AIDS Control Council. NEPHAK is
leading a campaign to fund the Kenyan AIDS Tribunal to empower PLHIV to enforce their human rights.
NEPHAK used evidence from the GIPA Report Card to work with NASCOP to develop national Guidelines for Mainstreaming GIPA in
Kenya’s Response to HIV and AIDS, in working group dedicated to producing national guidelines on Prevention with Positives
The LTA programme has helped to strengthen regional and global linkages, with the International Labour Organisation (ILO) requesting
the involvement of national PLHIV networks in its efforts to implement the new ILO Recommendations on the World of Work. The
evidence gathered by PLHIV networks on stigma and human rights violations, will be used to harmonise national policies and then move
policy to action.
Kenya won Round 10 grant from Global Fund to support capacity building of CHWs to facilitate demand for HIV prevention. NEPHAK
provided evidence from the Stigma Index to help convince the WHO and Ministry of Health that stigma at the community level will
block access, and to stress the need to explore this community access from the perspective of the end user (PLHIV).
NEPHAK met with head of PEPFAR in Kenya to disseminate HIV LTA reports and ask for support on how to address the report
recommendations.
At the first National Symposium on HIV and the Law, NEPHAK shared presentation based on evidence from Human Rights Count!
NEPHAK has advocated to the National AIDS Control Council to allocate a budget line for a 2013 review of the GIPA guidelines,
especially around treatment as prevention.
NEPHAK played key role in formation of Kenyan All-Party Parliamentary Group on HIV and AIDS.
NEPWHAN contacted authorities when a woman living with HIV who qualified to be an air hostess was stripped of her certificate to
practice because she was HIV-positive. The campaign resulted in a settlement of the case which included employing and sponsoring the
education of the woman. NEPWHAN is documenting this work in Human Rights Case! for future leverage
PLHIV Contributions to National Policy
National Policy
Tanzania participated in public hearings at regional and national level to target the East African HIV Act bill and remove the criminalization clause.
Efforts resulted in regional bill being fixed and passed and will supersede all National HIV Acts and Bills
Tanzania successfully advocated for inclusion of priorities into Tanzania’s NSP. South Africa has included the PLHIV Stigma Index as part of the NSP
for AIDS.
On World AIDS Day 2010, NEPWHAN hosted the Nigerian First Lady, who acknowledged the importance of the network in the national response to
HIV and AIDS, and also said the government should strengthen its support to the network. As a result, NEPWHAN now has a vehicle and land for
the network to build offices.
GIPA Report Card helped make GIPA more than just a guiding principle; helping it become part of the National AIDS Strategic Framework. NZP+
also utilized tools to increase the focus on Young People and the SRH strategy.
NZP+ was requested to and presented at the UNAIDS PCB in June 2010, evidence from the PLHIV Stigma Index and the impact the evidence had on
HIV response in country. The UNAIDS PCB passed a resolution to support the implementation of the PLHIV Stigma Index in at least 25 countries.
The LTA tools provided NZP+ with base of evidence to use to influence direction of Zambian NSP. NZP+ secured inclusion of PLHIV Stigma Index
and Positive Health, Dignity and Prevention framework into the new Zambian NSP. NZP+ also made strides in taking data from SRHR study and
getting it included in NSP.
NZP+ used stigma index to develop National Workplace Policy, review gender policy, and influence constitutional review process.
NZP+ used the Stigma Index and SRHR results from the LTA programme to develop guidelines to shape discussions with civil society and the
Minister of Health around SRHR and YPLHIV, which previously had very light supporting materials. The Minister agreed to partner with the
Ministry of Community Development and Mother & Child Health to develop guidelines around the integration of SRHR and HIV in Zambia. The
consultant has been hired to begin that development.
In September 2012, NZP+ held a meeting of Parliamentarians. The Parliamentarians used the Stigma Index as an official reference document to
ensure laws under review were not stigmatizing.
NZP+ used the Stigma Index to help draft a document for the Constitutional Review Commission.
MANET+ held workshops to develop 5 policy briefs on PLHIV stigma and discrimination, which were then shared with 12 parliamentarians.
Parliamentarians were engaged and committed to speed up passage of the HIV bill and to work on the aspects of criminalization.
PLHIV Contributions to National Programmes
National Programmes
As a result of NZP+ SRHR study in adolescents with HIV, a partnership has formed with the Regional HIV Psychosocial Support to develop
psychosocial tools for adolescents with HIV, the process of which UNICEF has an interest in funding. NZP+ has also partnered with Planned
Parenthood as a result of the study in an effort to train young people living with HIV as counselors.
Cross country technical support is a highly successful capacity building practice within the LTA programme. A Kenya PLHIV focal point is supporting
the Tanzania PLHIV network, Cameroon’s focal point supports the Senegal PLHIV network, and Zambia’s former focal point supported Malawi and
South Africa PLHIV networks. UNAIDS West and Central Africa have approached Cameroon and Senegal to provide technical support to PLHIV
networks in the Ivory Coast, Democratic Republic of Congo, Burkina Faso and Liberia.
As a result of NAPWA’s advocacy to protest potential clinic closure, the government set up a national health fund to support HIV, is setting up
national health insurance and took over management of the hospitals about to close.
During data collection phase of Human Rights Count!, NAPWA discovered one clinic had health workers who had violated the rights of PLHIV to
access free government services for social grants. NAPWA picketed to demand dismissal of health workers and they were suspended and then
after a hearing with the regional health offices, fired.
Human Rights Count! received $75,000 funding from UNDP to expand the program in provinces nationally.
NZP+’s involvement with the GIPA Report Card created multiple examples of direct engagement with the government. GIPA results were
presented to the National AIDS Council, and then following on, PLHIV presented the findings to all ministries in country.
At National Symposium on HIV and the Law, NEPHAK nominated and awarded for outstanding contribution to human rights of PLHIV and accessing
HIV treatment. Award based on NEPHAK’s LTA programme SRHR findings that showed how PLHIV are not treated fairly by nurses/doctors/HCPs
because of their HIV status.
NEPHAK received small grant from GNP+ for capacity building around proposal development; skills which were then directly applied and combined
with evidence from PHDP to write a PHDP proposal. EGPAF supported funding of the proposal, and the programme will be implemented in four
counties.
PLHIV Engagement and Organizational Impacts
Organizational Impacts (Capacity Building and Sustainability)
PLHIV networks have each completed 5 evidence gathering and research tools through the course of the LTA programme.
NZP+ worked with CAFOD to roll out PLHIV stigma index with religious leaders.
RéCAP will now provide technical support to Senegal, Cameroon, and potentially Cote D’Ivoire for implementing the stigma index.
ReCAP’s PLHIV Stigma Index research in Cameroon has resulted in a funder funding six national PLHIV networks not part of the LTA programme to
perform the PLHIV stigma index in the respective countries.
By improving PLHIV engagement in the national advocacy platform, the standing of RéCAP has improved in Cameroon and the network has been
invited to be a part of the 2011 CCM.
NAPWA has secured funding from the Department of Social Development in South Africa to complete the PLHIV Stigma Index in whole country with
TAC and others.
Prior to the LTA programme, NAPWA never had programmes on lesbian, gay, bisexual, transgender or intersexual communities. As a result of the
LTA programme, NAPWA now involved with issues of LGBTI and work in partnership with LGBTI organisations.
NAPWA worked with WAC to develop a civil society platform that will help address funding of the LTA programme.
The National Steering Committee was developed for the Stigma Index, helping to develop protocols and budget.
Launching the LTA Programme in Moldova is the first ever joint civil society mobilization with government and the UN for Worlds AIDS Day 2010.
The PLHIV representative is the vice chair of the CCM for the Global Fund.
Tanzania utilized evidence from the Stigma Index to secure funding from UNAIDS to support implementation of stigma index in five other regions.
NEPHAK leveraged the LTA M&E structure to document work and provide evidence to funders, resulting in the World Bank provision of additional
funding for Human Rights Count! in Rift Valley; a location with high rates of human rights violations.
NEPHAK pushed for more sustainable financing of HIV/AIDS, engaging governments and the National AIDS Control Council to allocate domestic
funding since most of HIV/AIDS efforts are funded by external partners/agencies.
NEPHAK sits on the CCM for the Global Fund and is a central part of the national response to HIV and AIDS in Kenya.
RNP+ elects new leadership and moves towards more inclusive HIV advocacy in Senegal. Elected first representative
30 from outside Dakar as President
and increased representation of women in network
leadership
from
28%
to
33%.
Draft Dec 20, 2012
PLHIV Contributions to Media Successes
Media Successes
In South Africa, Ubuntu Bethu targeted the practice of “Ukuthwala” (kidnapping of young girls who are then forced to marry older men). The
group advocated on behalf of the girls, educated the community how this practice is against the law, and lobbied traditional leaders for buy-in.
They also made use of media with a DVD called “Stolen Innocence” and were featured on CNN. As a result, there has been a significant decrease
in abduction cases.
NAPWA led a march to protest the potential closure of clinics providing treatment to over 6,000 PLHIV. The group wrote a letter to the minister,
requesting a meeting and then marched to the minister’s office. The minister received the petition and then the group organized media
campaigns featuring them and the minister discussing the way forward.
NACOPHA demands apology from Parliament and Government of Tanzania for remark on discontinuing HIV/AIDS funding since those infected
“should be disregarded because they get the disease on their own will.” NACOPHA’s public statement helped to garner positive press.
RNP+ held first ever PLHIV march in country in Senegal, which gained media coverage.
NZP+ teamed with ZARAN to organise a meeting of 20 media organisations, 5 TV stations, 8 radio companies, and 2 online publications to help
them understand the impact of HIV-related stigma on PLHIV. As a result, all the media organisations ran a story about NZP+. Post Newspapers
offered NZP+ a weekly spot to inform the public about HIV and stigma.
4 National Radio programmes were held that used the Stigma Index results to raise public awareness about having a constitution that protects the
rights of PLHIV.
3 live National TV programmes (sponsored by UNICEF) were aired that looked at stigma in PMTCT. Findings from the Stigma Index were used as a
base and the SRHR study was used to frame young people’s involvement in PMTCT.
MANET+ announcement of LTA programme covered by Malawi major newspaper, The Nation, during a news conference in October 2011.
Announcement helped to spread positive message about MANET’s evidence-based advocacy.
Global Successes
Global
RNP+ Ibrahima Ba opens AFRAVIH 2012 (pre-eminent HIV conference for Francophone countries) with powerful call to challenge HIV stigma, end
homophobia, and governments to fund HIV at the High Level meeting at the United Nations in June 2011.
UNAIDS Coordinating Board, following an intervention by NZP+ and programme results, has decided to support the implementation of the PLHIV
Stigma Index in as many countries as possible.
The work on the LTA programme has helped increase the weight of GNP+ and WAC as partners in the international arena. GNP+ was recently
invited to participate in the development of UNAIDS partnership strategy and WAC is partnering with the United Nations Development Programme
on the Global Commission on HIV and the Law.
GNP+ global advocacy has been shaped by the evidence and recommendations coming from national networks. The work from the national
networks is improving the evidence gathering methodologies through the lessons learned, as well as providing insight where evidence gaps exist
and methodologies that need to be developed to address those gaps.
LTA PLHIV networks are helping define a high-profile role for civil society and PLHIV networks in discussions and policy dialogues, and to highlight
the value of civil society organisations led by PLHIV. As an example, the LTA focal point from Senegal opened the 6 th Francophone HIV Conference
in March 2012 by calling for an end to discrimination against people who use drugs, MSM, and sex workers on the grounds that such
discrimination prevents people from realizing their potential to fight the epidemic.