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.
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Join West Africa Consultation for Global Fund Concept Note
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Civil society response to Hepatitis C Virus
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 -
Video for change training for advocates
WITNESS partnered with us to support a day’s video for change training, for 11 of our partner organizations in Africa. The initiative is part of a joint project of International Treatment Preparedness Coalition and AIDS & Rights Alliance for Southern Africa, funded by Robert Carr civil society Networks Fund.
WITNESS
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.
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Delight, Felistus and Sylvere paying close attention at video 4 change training 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?
Richard, Bester and Zakaria getting to grips with the cameras 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.
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Africa-wide campaign calls for effective HIV treatment
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 -
"Access to Treatment" at 2015 AIDS Philanthropy Summit
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 of ITPC to move on
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.” -
Civil society even more critical in Sustainable Development Goals
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. -
PLHIV as “watchdogs” spreads through region
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/This is the form to be filled in. 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
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Workshop to Strengthen Advocacy on HIV/TB financing
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. -
Strengthening health systems for all
Christine Stegling, Executive Director of International Treatment Preparedness Coalition, explains the importance of strengthening global health systems for all so that no one is left behind. In her interview for the Open Society Foundation – New Executives Fund, Christine explains it is time re-politicize the AIDS debate.
Christine was one of the first beneficiaries of Open Society Foundation’s – New Executives Fund. In this short video Christine reflects on the space and support it has given her to make ITPC a more strategic and cohesive global coalition, and also to establish the network’s offices in the South.
“Community activism has played a crucial role in achieving better access to HIV treatment. Although there is comparatively better access to treatment now than in the past, communities must remain at the center of the global HIV response. The International Treatment Preparedness Coalition (ITPC) was established in 2003 as a loose but fierce coalition of AIDS activists from across the world, united in a common belief in the right to health for all. Over the years, this movement has grown into a global network of treatment activists, with regional structures in Africa, Asia, Latin America, the Caribbean, and Eastern Europe.”
Read the original on Open Society Foundation’s website and see the interview here. -
ARV Procurement in Russia in 2014
International Treatment Preparedness Coalition – Eastern Europe publishes its report ARV Procurement in 2014: History of Decentralization in English.
The number of people living with HIV and on treatment in Russia, is less than a third of the total number of people who need treatment. The price of anti-retroviral therapy remains a significant barrier to treatment in the country.
The conclusions and recommendations of the report are included below in full. For the full report download the pdf.Conclusions and Recommendations
One of the main problems in provision of HIV-positive patients with drugs in Russia is that the number of people who need treatment considerably exceeds the number of patients who receive the therapy. This is confirmed by the relevant statements of officials, publications in mass media, numerous statements of patients, as well as indirectly by the results of this report.
Recommendations for Government of the Russian Federation
Based on the results of analysis of ARV procurement, this problem may be solved by sharp decrease in prices for drug in order to increase the therapy coverage. For this purpose, the Government of the Russian Federation and other competent authorities are suggested to take the following measures:
- Develop and adopt a normative document regulating the incremental reduction in prices of drugs, including those for HIV treatment. The document should specify the obligation of generic manufacturers to register prices at the level not less than 30% below the price of the original drug. In addition, each subsequent generic drug must be also registered at a price below the prices of analogues existing in the market.
- Consider the possibility of full or partial centralization of ARV procurement to increase the volume of purchases, which will allow reducing the price in the long run. In addition, it is recommended to analyze the feasibility of direct procurement of drugs from LEM without distributors to minimize their influence on the price change.
- Consider the possibility of issue of compulsory licenses on clinically important ARV drugs that have no analogues in the Russian market and/or that have a significant share in the federal budget for antiretroviral therapy. According to the authors of the report, first of all, attention should be paid to the following drugs: lopinavir/ritonavir, raltegravir, atazanavir and tenofovir/emtricitabine.
- Use other possibilities provided for by the flexible provisions of the TRIPS Agreement, in particular, parallel imports, to reduce prices of drugs for treatment of socially significant diseases.
Recommendations for the Ministry of Health
Based on the results of analysis, it is evident that patients in Russia receive non-optimum HIV treatment regimens according to the recommendations of WHO. In this regard, the Ministry of Health and other competent authorities are recommended to:
- Ensure regular (at least once per annum) review of the list of essential medicines in order to consider the possibility of inclusion of newly registered ARV drugs, as well as exclusion of drugs not recommended for the use in HIV treatment;
- Revise legal acts regulating the process of registration of drugs in the Russian Federation in order to facilitate the entry to market of new drugs, including generics.
Based on the results of analysis, it may be concluded that ARV procurement is still not functioning well in the Russian Federation. There is a significant difference in prices for the 45 same drugs in different constituent entities of the Russian Federation, different systems are used for justification of the initial maximum price, and auctions are delayed due to agreement of the auction documentation with regulatory authorities.
Recommendations for Consumer Rights and Human Welfare Protection
In this regard, the Federal Service for Consumer Rights and Human Welfare Protection (Rospotrebnadzor), the Federal AIDS Centre and other competent authorities are recommended to:
- Maintain a unified register of HIV-positive patients and oblige constituent entities of the Russian Federation maintain similar registries at the regional level containing parameters important for prescription and continuation of treatment, as well as forecasting of the demand for drugs in order to optimize the process of procurement and provision of ARV therapy;
- Provide technical support and training to administrators of AIDS centres and specialists of regional ministries of health in order to improve the planning and procurement under FZ-44 for prevention of interruptions in supply of ARV drugs, with a special emphasis on justification of the initial maximum price and approval of
auctions with a single supplier; - Consult with regulatory authorities for the possibility to conduct more rapidly (on a priority basis) inspections of auctions for ARV procurement with a single supplier in order to avoid interruptions in supply of essential medications;
- Recommend to AIDS centres and regional health committees closer interaction with patient organizations in planning and procurement of ARV drugs;
- Develop an official position and recommendations on procurement of combination forms of ARV drugs in cooperation with the Federal Antimonopoly Service, AIDS centres and regional ministries of health.
AIDS centre and regional ministries of health are recommended to interact with patient organizations in planning and procurement of ARV drugs to prevent interruptions, as well as in connection with increase in the number of generic drugs in the market to hold consultations for patients regarding replacement of one trade name for another for the same international non-proprietary name.
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Support for Amnesty’s draft policy to decriminalize sex work
In a letter to Amnesty International, Christine Stegling shows ITPC’s support for a draft policy to decriminalize sex work.
Dear Salil Shetty
Re: Support for your draft policy statement on the decriminalization of sex work
I am writing to you in my capacity as the Executive Director of the International Treatment Preparedness Coalition (ITPC), a global coalition of HIV treatment activists from around the globe. We work in all geographic regions of the world through our eight regional networks and a variety of partnerships.
As a global coalition, ITPC was founded on a strong belief in international solidarity among people living with and affected by HIV. We believe that the fight for HIV treatment remains one of the most significant global health rights issues, with the majority of those requiring treatment still lacking adequate access.
While much progress has been made in terms of people living with HIV accessing anti-retroviral treatment and HIV prevention services, serious disparities remain for many groups. Sex workers are one of the groups that are disproportionately affected by HIV. For example, prevalence for sex workers is 12 times higher than in the population as a whole. There is almost no data showing the percentage of sex workers able to access uninterrupted, quality anti-retroviral therapy but there is evidence that many sex workers face enormous discrimination when it comes to accessing health services. Much of this is related to stigma, discrimination and criminalization of sex work which results in poor documentation of human rights abuses of sex workers and limited action to protect them from such abuses. As HIV treatment activists, we strongly support any measures that support the rights of sex workers so they can fully participate in public life, access services and participate in decisions that affect their lives.
We therefore wish to express our support for Amnesty International’s Resolution and draft policy calling for the decriminalization of sex work, to be tabled for adoption at the International Council Meeting, 6-11th of August 2015.
With warm wishes
Christine Stegling
Executive Director
International Treatment Preparedness Coalition (ITPC)
