Join ITPC at ICASA 2015. Below you can find out where we will be and you can download the ITPC at ICASA 2015 (PDF) flyer to print and take with you.
SATELLITE SESSIONS
Routine for You, But Not for Me!
Tuesday 1 December – 18:30-20:30 | Location: Committee Room 6 | Hosted by ITPC & AIDS and Rights Alliance of Southern Africa (ARASA)
Research on routine viral load testing in 12 African countries – Botswana, Cameroon, Cote d’Ivoire, Egypt, Kenya, Malawi, Morocco, Swaziland, Tanzania, Uganda, Zambia and Zimbabwe – informed a community-driven campagin titled Be Healthy – Know Your Viral Load launched in October 2015.
Join us and advocate for the strategic scale-up of routine viral load testing! Session will include video screening, moderated panel discussion, and catered cocktail hour!
Why Viral Load Matters Increasing viral load awareness in Sub-Saharan Africa
Thursday 3 December – 18:30-20:30 | Location: Committee Room 6 | Hosted by ITPC & Médecins Sans Frontières (MSF)
Join us for a community dialogue on the findings of a rapid assessment about the level of awareness and knowledge of viral load testing in nine African countries: Kenya, Malawi, Uganda, Zimbabwe, Swaziland, South Africa, Lesotho, Democratic Republic of Congo, Mozambique.
Session will include research presentation, moderated community discussion, and catered cocktail hour!
POSTER PRESENTATIONS
The State of Routine Viral Load Testing Across Africa
Community Monitoring and Advocacy for Access to Routine Viral Load Testing in 12 Countries
Monday 30 November – 16:15-16:45 | Location: Exhibition Hall | Hosted by ITPC
Children: The Missing Target in the Scaling Up of HIV Treatment in North Africa
Monday 30 November – 16:15-16:45 | Location: Exhibition Hall | Hosted by ITPC MENA
COMMUNITY VILLAGE
Treatment Networking Zone for Initiatives Across Africa
Daily | Location: Booth 29 | Hosted by ITPC Regional Networks in Africa
Bruce Tushabe reports below on how he mobilized Civil Society Organizations (CSOs) to successfully lobby for greater engagement with the Global Fund. These efforts led to a 10 fold increase in funds for CSOs to scale up the community led HIV response in Malawi. Bruce works for Malawi Network of Religious Leaders Living with or Personally Affected by HIV/AIDS (MANERELA+) the organization at the heart of this story.
We were being left out
We at MANERELA+ wanted to ensure that the experience and expertise of Civil Society Organizations (CSOs) was included in the Global Fund national plans in Malawi. Through our Executive Director, McDonald Sembereka, we were involved in the Global Fund concept note development consultations. This process hadn’t worked for CSOs in the past, and there was no sign it was going to change in the future. We could see we need to get more involved. In February 2015, Macdonald and I realized that the Principal Recipient had a huge amount of influence in budgeting and costing of the plans, and that we were being left out. The Principal Recipient for the Global Fund grant in Malawi was the Ministry of Health (MoH). Most of the activities proposed by the technocrats at the MoH were around bio medicals with little consideration for the role of communities, and of Community System Strengthening. We were keen to change that.
We got ourselves organized
The Ministry of Health was organized, but we CSOs were not. So we at MANERELA+ spearheaded the organization of several side meetings with eight CSOs where we could discuss our concerns freely. In February and March 2015, we organized four meetings over the period of a month. Together we developed a collective plan to ensure we spoke with one voice, to influence the development of the national plans.
We lobbied for a different Principal Recipient
As a collective, we actively lobbied the Global Fund to appoint a different Principal Recipient, who at that time was the National AIDS Commission and the Ministry of Health (MoH). On this issue we had our first success.
Prior to this, there had been some audit queries about the National AIDS Commission, and as a result Malawi was downgraded to ‘B2’ which means, ‘inadequate, but some potential is demonstrated’. So there was an appetite for change. We lobbied the Country Coordinating Mechanism through people living with HIV (PLHIV), youth and key population representatives to lobby the Global Fund. We used established mechanisms like our quarterly meetings with other CSOs and PLHIV networks to discuss and agree our strategy. When we met with the Global Fund mission we continued to build our case.
We succeeded! The Principal Recipient role is now divided along thematic lines between ActionAid who leads on HIV, World Vision who leads on malaria, and the MoH who leads on TB. The MoH continues to provide technical expertise across these areas.
We requested better engagement with the Global Fund
Even when we met with the Global Fund we felt disadvantaged. They would meet us first when on mission to Malawi, before meeting other partners. So we had no opportunity to challenge or counter what the government was saying. We raised this with the Global Fund and secured a slot alongside INGOs, such as ActionAid, during the latter part of Global Fund visits. So we still had our early meetings, but now could also meet them toward the end of their mission. This gave us an opportunity to engage fully with the management of the Global Fund grant, and address the mistakes of the past. One thing we were really keen to do was avoid duplication and ensure all actors in the response work together and that our roles complement each other.
We got stuck into budget and accountability
We at MANERELA+ took it on ourselves to facilitate sharing the budget amongst CSOs enabling them to understand the implications of the MoH costings. Previously it had been difficult for any of us to interpret the budget. After training provided by International Treatment Preparedness Coalition and AIDS & Rights Alliance in Southern Africa, as part of a project funded by Robert Carr, we were able to understand the MoH budget, and better able to advocate for the changes needed.
Most of the budget in Global Fund was allocated to bio medicals and procurement of equipment. Hardly any budget had been assigned to community system strengthening. CSO activities weren’t costed adequately, and important elements of our activities were missed out altogether. We decided we needed to fight for space at the table to challenge the budget.
MANERELA+ participated together with other local NGOs like Malawi DREAM,Malawi Network of AIDS Service Organisations, Development Aid from People to People, Centre for the Development of People, and others. Better engagement with these CSOs strengthened our position in our efforts to challenge the budgets being presented by the MoH.
MANERELA+ also participated in various workshops, such as the prioritization consultative workshop with AIDS Accountability where CSO’s came up with priorities and thematic areas to be funded by Global Fund.
We contributed to the Global Fund concept note
Having secured a place at the table we were able to fully engage in the planning and development of the concept note. During these meetings we had also spotted that there was no integration between HIV, Malaria and TB. The Global Fund team asked how CSOs could help ActionAid to scale up TB interventions. We shared MANERELA+ success models working with communities on TB and questioned some of the plans that were inadequately funded. The Global Fund made it clear to ActionAid that if partners already had expertise and were already involved in such activities, like MANERELA+, that they should involve them as implementing partners. ActionAid had already called for a meeting with CSOs to engage them in the in concept note development.
What did we achieve?
Our participation in individual consultative meetings, and in budgeting and costing consultations resulted in increasing the Global Fund allocation to CSOs for community system strengthening from below US$1 million previously to over US$10 million.
Overall our efforts resulted in an increased award from the Global Fund for Malaria, TB and HIV of over US$332 million, with around US$26 million allocated to civil society for HIV and TB for Community System Strengthening. The Government of Malawi has now signed the agreement, and committed US$30 million of its domestic resources to the joint plans, and another US$30 for the procurement of health products and to strengthen health systems, with US$8.5 million set aside for antiretroviral therapy. Our participation with other CSO’s has resulted in an allocation of almost US$390,000 for key population interventions.
Our participation also resulted in increased consultation with CSOs in PEPFAR’s country operation plan development processes. The PEPFAR country office in Malawi invited us for consultative meetings where CSO‘s were now represented. We felt that PEPFAR shouldn’t duplicate what was already included under the Global Fund country plan, and not overly focus on bio medicals. We had private meetings with CSOs ahead of the PEPFAR meetings to agree on our position.
For us one of our key achievements was being able to sit down and make specific suggestions and proposals with donors. We felt we were really able to help them maximize value for money, particularly important with today’s shrinking funds.
Please share your experiences with Global Fund processes, in the comments section below.
Throughout September 2015, the International Treatment Preparedness Coalition (ITPC) and AIDS and Rights Alliance for Southern Africa (ARASA) facilitated a joint regional internship exchange program funded by Robert Carr civil society Networks Fund.
The purpose of the program was to increase knowledge and build capacity around intellectual property and treatment financing within both ARASA and ITPC networks, as part of a larger effort to develop strong platforms and infrastructure that support South-to-South learning and coalition-building. Interns applied and were selected from three partner organizations: Treatment Advocacy Literacy Campaign in Zambia, Botswana Network on Ethics, Law and HIV/AIDS and Professionals Pride Kenya. The host organizations were ITPC – Middle East and North Africa in Morroco and Section 27 in South Africa.
John Kimbio’s Diary
John Kimbio, Program Officer, at Professionals Pride Kenya describes his experiences at host organization, Section 27 in Johannesburg, South Africa.
4 September 2015
The excitement to travel to South Africa was overwhelming, thinking of the different experiences I would have, forging new friends, what the internship will entail and the relationships I will be able to establish. Expectations and anxiety were mixed up in my head.
7 September 2015
Finally, I had this opportunity to meet some of the people I was interacting with via email. They seemed extremely different from what I was expecting since most of them are lawyers. They are highly engaging, very polite and friendly. They made me feel like their equal instead of a mere intern with little experience in human rights advocacy. I guess our passion in advancing human rights, and particularly access to health for all, superseded our knowledge. This made me ready to learn how I can better myself and improve my organization’s capacity to make a difference.
8 September 2015
This day began with a section on how best to document real life stories of people living with HIV and the hurdles they face in accessing affordable essential antiretroviral and health services. The stories are then used as evidence during court cases and also in advocacy to improve the situation regarding the right to access to health. This section was very informative and captivating.
10 September 2015
I was exhausted mentally with how complicated health financing is, and issues around intellectual property rights in advancing access to essential and basic medicines. This is an area where Kenya health system hasn’t made progress. There is more that the Kenyan government can do to reduce the cost of access to essential medicine and the use of generic medicines, that are effective and also affordable.
My supervisor, Umunyana Rugege, and his junior, Sher Mohammed, were very interactive conducting informal, laid back conversations that made it much easier to understand. For the rest of week I had to go through some of the cases and interventions Section 27 had pursued in an effort to compel the South African government to implement the World Trade Organization’s (WTO) Agreement on Trade-Related Aspects of Intellectual Property (TRIPS) and Public Health.
17th September 2015
The highlight of the day was the press conference initiating a campaign for good governance, transparency and accountability which was organized at the office. Everyone in the office was there to support the initiative, alongside representatives from the other regions of South Africa. It was amazing how they were mobilizing a massive march in every city from different provinces all coordinated to happen on a single day. It was incredible to also interact with people from different organizations from around South Africa.
24th September 2015
Heritage day, everyone in town was dressed in their traditional clothes and national attires. Very colorful. I felt like the misfit…hehe. This was an opportunity for me to sample some of South African culture and cuisine. I had a great time at the theatre where they showcased some of their amazing artifacts, stories, poems, dances and plays. It was a relaxing day, full of fun-filled activities.
I was dreading the reality of leaving in a day’s time.
In order to secure funding for the regional program, International Treatment Preparedness Coalition -West Africa has been invited to develop a regional HIV concept note to the Global Fund Secretariat.
To ensure that the regional concept note responds to the needs of your countries and the region more broadly, it is critical that we hear from you on priority interventions that fully integrate the right to health, right to affordable medicines, gender and other key issues for populations most affected by HIV in the region.
Your input and responses to a survey will directly inform the strategic direction and priorities-setting for activities and interventions in the regional concept note. Find out more and take the survey.
Julia Dragunova, from ITPCru, shares a report on the civil society response to the heapatitis C virus (HCV)
The International Treatment Preparedness Coalition in Eastern Europe and Central Asia (ITPCru), the International HIV/AIDS Alliance in Ukraine, and the Alliance Center of HIV, Hepatitis C and Drug Use, present the second updated edition of the Report “Hepatitis C in Eastern Europe and Central Asia: Civil Society Response to the Epidemic”, describing the epidemiological situation, best practices in implementing HCV programs, key problems of people living with HCV in 11 countries of the region and the challenges that state institutions and civil society organizations face.
The Report was prepared with the help of experts and civil society organizations from all the countries of the region. This Report aims to support advocacy efforts and open dialogue with governmental agencies and pharmaceutical companies, and to raise the awareness amongst civil society on the epidemiological situation in particular countries, and in the region in general. The report will be regularly updated and published every 3-6 months based on developments. The report in English is attached to the letter here (PDF)
and the report in Russian is attached to the letter here
WITNESS is an international non-profit organization that empowers human rights defenders to use video to fight injustice, and to transform personal stories of abuse into powerful tools that can pressure those in power or with power to act.
The training session covered the basics to help participants consider when video might be most effective to support their advocacy strategy. It focused on the elements of video for change, such as strategy and filming techniques, including how to interview for storytelling.
The trainers
The trainer, Isabelle Mbaye, is a WITNESS consultant based in Botswana. Isabelle was supported by three experienced Video for Change practitioners, who shared their experience during the session.
Musola Catherine (featured in the top photo) is a well-known Director in Zambia, and is part of Award Winning, Vilole Images Productions.
Otim Patrick is the Video Advocacy Manager at the Refugee Law Project, in Kampala, Uganda. He heads up the Media4Social Change Program for the organization, and is an active member of the V4C Africa Network.
Elaine Maane works at STEPS South Africa, in Cape Town. STEPS makes documentaries for social change and has used video for advocacy to campaign on HIV/AIDS.
What is Video for Change or Video Advocacy?
Video advocacy is the use of video to bring about change in attitudes, behavior and policies. It is made for a specific reason. It is not simply video about a topic. “It is about the process of bringing about change in policies, law or people’s behavior and attitudes. Video advocacy is about using visual media as a strategic tool to engage people to create change. Making an advocacy video requires setting specific objectives, identifying target audiences and developing a strategic plan for production and distribution to ensure the video has impact. Remember that video is the medium, advocacy is the purpose, and change is the goal.” Read more here from the WITNESS website.
Today, a new campaign calls on African governments to make viral load tests routinely available to all citizens living with HIV. A month ahead of World AIDS Day 2015, the campaign ‘Be Healthy – Know your viral load’ is coordinated by the International Treatment Preparedness Coalition (ITPC), Aids Rights Alliance for Southern Africa (ARASA) and 11 national partners from across Africa: Botswana, Cameroon, Ivory Coast, Kenya, Malawi, Morocco, Swaziland, Tanzania, Uganda, Zambia and Zimbabwe.
The World Health Organization strongly recommends routine viral load testing, as an essential part of effective HIV treatment. While many countries in the region have adopted the WHO guidelines, the tests are not widely available in 10 out of the 11 countries involved in the campaign.
The start of the campaign is marked by a march in Lusaka, Zambia today. Joining the march will be people living with HIV, treatment advocates and representatives from many of the participating countries. Together they will deliver a letter to the Secretariat of the Common Market for Eastern and Southern Africa (COMESA), the Zambian Ministry of Health and Foreign Ambassadors. Be Healthy campaign press release ITPC ARASA
ITPC runs session at Philanthropy Summit December 2015
The session entitled, ‘Investing in Communities: Linking Demand with Intellectual Property Literacy and Advocacy for Sustained HIV Treatment Access’, will take place on 7 December in Washington.
The Summit is organized by Funders Concerned about AIDS and the Panel Discussion is led by ITPC. See the concept behind the session below, and do register here.
Panel Discussion on Access to Treatment and Intellectual Property Barriers
The history of the HIV movement has shown that generic competition is the most effective way to reach affordable prices of HIV treatment. The cost of a first-line antiretroviral (ARV) regimen dropped from US$10,000 to less than US$100 per person per year due to the absence of legal and intellectual property (IP) barriers in the early 2000’s and in some cases to the effective use the Trade-Related Aspects of Intellectual Property Rights (TRIPS) flexibilities, such as patent oppositions and compulsory licenses. Civil society’s role has been instrumental in establishing and sustaining treatment demand by catalyzing national treatment programs, determining priority medicines, and systematically addressing market barriers to sustainable HIV treatment access.
In the post-TRIPS era, IP protections on medicines are implemented in the majority of developing countries. Patents are now granted on recently developed ARVs, including in India, and price decreases previously observed for first-line ARVs is unlikely to happen automatically. In addition, the majority of second- and third-line ARVs remain expensive and out of reach in many countries and where such drugs are available, their sheer cost contribute such heavy burden on national treatment budgets.
This panel discussion organized by ITPC, in presence of key activists at the forefront of the fight for access to medicines in developing countries, seeks to highlight the changes in the intellectual property framework globally and in Low and Middle income-countries, and explore the role of funders in supporting civil society work on intellectual property and access to medicines.
Moderator: Nadia Rafif (MSM-GF, USA)
Panelists: Othoman Mellouk (ITPC, Morocco), Sergiy Kondratyuk (All Ukranian Network of People living with HIV, Ukraine), Alma De Leon (ITPC-LATCA, Guatemala)
Christine Stegling, Executive Director of ITPC global team, to move on
After two years successfully leading the global network of HIV treatment advocates, International Treatment Preparedness Coalition (ITPC), Christine Stegling is to move on.
“Christine helped guide ITPC through a momentous period of change coming on board when the HIV movement was facing serious challenges,” explains Chair of the Board, Gregg Gonsalves. “With Christine at the helm, ITPC has become a stronger global advocacy voice, solidifying its position as a strategic and influential player in the global HIV movement, while at the same time ensuring that organizational structures are strengthened. ITPC is now able to engage more actively in advocacy at regional and international levels ensuring the voices of grassroots activists are heard at the top tables.”
Gregg Gonsalves says ITPC is much strengthened
Christine has built the organization’s advocacy capacity with new professional staff, leading our two major campaigns on intellectual property and viral load monitoring, and a new communications lead helping us to strengthen the impact of our advocacy work and communications. Solange Baptiste, continues in her post as Director of Global Programs and Advocacy, providing ITPC with much needed continuity and program direction at this critical time.
Christine has helped begin the process of moving some of ITPC operations away from our fiscal sponsor, Tides in the US, and establish ITPC as an independent legal entity in Botswana. This process will continue. Christine will remain in post until the end of 2015 to work with the board and staff for a smooth transition. Christine will become the new Executive Director of the International HIV/AIDS Alliance from January 2016. You can see the Alliance statement here.
”I have really treasured my time working for the only global network of treatment advocates,” said Christine. “ITPC is in great shape and I know it will continue to strengthen the capacity of treatment advocates and networks and to shape the HIV response.”
The Robert Carr civil society Network Fund (RCNF) was given a financial boost, and its role acknowledged, at a top level meeting during the 70th session of the UN General Assembly in New York on 29 September. The fund has played a critical role supporting civil society networks to lead the HIV response in their own countries and globally. The meeting acknowledged that the role of civil society will be even more critical in the effort to end AIDS, as part of the new Sustainable Development Goals.
The AIDS Rights Alliance of Southern Africa (ARASA), is a beneficiary of the Fund, and participated in the meeting. Representing ARASA, Felicita Hikuam, presented work carried out in partnership with the International Treatment Preparedness Coalition (ITPC) as part of two significant projects delivered with support from RCNF.
“By working at the regional level we strengthen the capacity of community-based grass roots groups to implement services, to monitor targets, and identify gaps and advocate to address those gaps,” said Ms Hikuam, of the AIDS Rights Alliance of Southern Africa.” Read more here.
Julia Dragunova reports on an initiative developed by ITPC in Russia that is now catching on throughout the region – helping communities and countries to prepare for when the global fund withdraws their support for HIV treatment.
We in ITPCru wish to share news about one of the most successful activist-led initiatives, which is now spreading from Russia to other Russian speaking countries in Eastern Europe and Central Asia (EECA). The initiative is spreading because of its proven efficiency and value for people living with HIV (PLHIV). The initiative is a web-based tool PEREBOI (the Russian word for STOCK-OUTS) and can be found here http://pereboi.ru/
How it works
It is a very simple, non-commercial website (in Russian only, so far), where people living with HIV can leave messages about violations related to their treatment or testing, such as stock outs of antiretrovirals (ARVs), viral load and CD4 kits and commodities. An example of the electronic form to be filled is here to the left.
Once a message is left, a professional from the PLHIV community responds. The consultant either explains what the patient can do about the revealed violation. Or in some cases will take an advocacy action on behalf of the patient if they cannot deal with the issue themselves. Traditional methods used to handle violations include official letters and requests to government institutions, and brief information about PLHIV rights and laws regulating ARV treatment and testing provision in the country. Importantly, this tool is not a “Complaint Book”, but rather an instrument to monitor the situation and to motivate patients to actions.
It is also important to mention that activists support this resource on a voluntary basis. The government should cover the costs of all ARVs and test kits in Russia. The HIV community in Russia started this initiative five years ago. The activists wanted to find a new resource that could fulfill two important functions:
To register specific cases of violation of rights for further advocacy;
To help PLWH with access to treatment.
Promotion about the tool
Information about this website is widely shared using a range of tools, including the media, websites of NGOs, email lists and groups, as well stickers left by people living with HIV on the walls of institutions distributing ARVs in the country. An example of stickers & cards is in the main photo above. Translated these read: “One pill replaced by two? Leave a message at WWW.PEREBOI.RU” and “Testing denied? Leave a message at WWW.PEREBOI.RU”.
Why it is needed
During the next few years, the Global Fund will stop funding most in the countries of the EECA region. This means that the responsibilities for providing ARVT and test kits to PLHIV will be transferred to the governments, and other countries will start to work with procurement systems similar to the system used in Russia. The EECA community thinks that it is good for most countries, as it is an opportunity to build their own procurement systems. However, the transition period from one system to another may be challenging. For example, most countries face difficulties with registering all the necessary ARVs and drugs for co-infections, and in this case it is not clear how the procurement mechanism will work.
To help communities prepare ITPCru decided to spread the model of the Russian advocacy tool to other EECA countries, and to develop three new similar websites adapted to the specific conditions of each country. The first countries include Belarus http://pereboi.by/(already in operation), Moldova and Kazakhstan (currently under development). The Russian community of activists, fully supported by ITPCru, is keen to share all of our resources in order that PLHVIV from these countries are able to advocate for full and high-quality access to HIV treatment.
As demonstrated time and again, the initiatives managed by community activists can be very useful for people affected by diseases. These initiatives influence the work of the entire system and contribute to improving access to treatment. For more information contact Julia Dragunova, Programme Officer, ITPCru. E-mail: julia.dragunova@itpcru.org
AIDS Rights Alliance for Southern Africa and the International Treatment Preparedness Coalition hosted a workshop for activists titled “Strengthening Key Population Advocacy for the Best Use of Global Fund Resources and Sustainable Funding for HIV & TB in Botswana, Malawi and Tanzania”.
The five day workshop in March 2015, aimed to equip leaders and activists from key populations, human rights and treatment activist leaders from Botswana, Malawi and Tanzania with knowledge, skills and tools so they could ensure that Global Fund resources are used for evidence based interventions that support those most affected by HIV in their respective countries.
Participants were drawn from strategic organizations led by and serving people who use drugs, sex workers, women and LGBTI populations in the three focus countries.
Key issues that emerged during the course of the five days included:
Key population groups require sustainable support to ensure active, informed and consistent participation in the Country Coordinating Mechanism (CCM) and other funding platforms and processes. This support should include investment in communications mechanisms, which facilitate consultation and feedback to members of their constituency at all levels;
Participation of key population groups on Country Coordinating Mechanism (CCM) and other funding platforms and processes should move beyond discussion of challenges faced by key populations to translate into political will and allocation of resources for programming that addresses the needs of those most affected by HIV and TB;
Advocacy for investment of GF resources in interventions that address challenges faced by key populations should not only focus on the concept note development stage and should continue throughout the entire GF grant-making process and beyond to ensure that there is actual programming, budgeting, implementation as well as ongoing monitoring and evaluation of interventions addressing the needs of key populations;
Although there are isolated efforts underway in the three focus countries to advocate for investment of domestic resources for sustainable HIV and TB responses, this advocacy should be strengthened; and
There is a need to build capacity of key populations and their allies to undertake health finance and budget analysis and tracking as a means to strengthen the evidence-base for effective advocacy for domestic HIV and TB financing.
The meeting culminated with representatives from each country developing (either joint or by organization) a peer- and facilitator-reviewed advocacy work plan that formed part of their application for direct support through a closed request for proposals from ITPC/ARASA.
Experts from the Global Forum on MSM (MSMGF), the Southern African Litigation Centre (SALC), the Centre for Economic Governance and AIDS in Africa (CEGAA) and the GF itself also contributed to the workshop. ARASA staff and ITPC’s Regional Coordinators in West, Central and East Africa, who are leading community monitoring projects supported by the German Backup Initiative (GIZ) also supported the facilitation of the meeting and group discussions.
Read the full report here.