“The Regional Community Treatment Observatory improved our evidence-based advocacy. We are more credible. We are relied on.”
Amen Hlomewoo, Community Treatment Observatory Focal Point, Togo, pictured here receiving the CTO Accreditation at the ITPC CTO Learning Event on October 17 at the UNICEF/ UNAIDS Meeting Room, Abidjan, Côte d’Ivoire
Blessi Kumar (centre), CEO of the Global Coalition of Tuberculosis Activists, pictured here alongside her GCTA colleagues Priyanka Aiyer and Archana Oinam at the World Lung Conference 2019, Hyderabad, India
Greg Vergus, Coordinator, ITPC Eastern Europe and Central Asia (ITPCru), pictured in a screenshot from the CTO Impact Film released in October 2019
The International Treatment Preparedness Coalition (ITPC) is a global network of people living with HIV, community activists, and their supporters working to achieve universal access to HIV treatment and other life-saving medicines.
ITPC advocates for treatment access across the globe through 3 strategic partnerships:
Treatment education and demand creation
Intellectual property and access to medicines
Community monitoring and accountability
Our mission is to enable people in need to access optimal HIV treatment.
Our vision is longer, healthier, and more fulfilling lives for people living with HIV, their families, and their communities.
Our values
• Communities are at the center of the response
• There is equity in treatment access
• We work together in solidarity as a global movement
• We are transparent about our finances and how we work
• We are accountable to those we serve
ITPC is an open and flexible coalition. Our central structure is the Global Activist Network (GAN), consisting of the ITPC global team, ITPC regional networks, partner organizations, individual treatment activists, and community-based organizations.
We operate worldwide in English, French, Spanish, Russian, and Arabic.
“ITPC has played a major role in the development of my activism. They have provided training, resources, tools and funding. ITPC’s wealth of knowledge and platform to move agendas from the grassroots to the national, regional and global is unique!”
Patricia Ochieng, GAN member, Kenya
Dong Do Dang, 44, is the Chairman of the Viet Nam Network of People Living with HIV/AIDS (VNP+) and a member of the Global Activist Network. Dang is based in Hanoi, where he is involved in leading treatment activism work for the network’s 167 groups of people living with HIV. When he’s not working, he likes to spend time at home with his family.
What first motivated you to get involved with HIV activism?
Most of my time is spent in meetings with partners. I can work from anywhere, sometimes in the office or late at home.
How does VNP+ work with ITPC?
VNP+ works with ITPC as a partner. And the important thing about the relationship for us is that we found common ideal, goals and works in term of supporting people living with HIV.
Have you ever been afraid as an activist, and if so, how did you find courage?
ITPC is led by a global team responsible for managing day-to-day operations.
We have a virtual office, and our team members are based in Africa, the Caribbean and Europe.
Health facilities monitored in 11 West African countries
9 Health facilities monitored in 3 South African countries
We revamped our communications, including a new website and animated videos on treatment issues
In Argentina, Brazil, India, Thailand and Ukraine
Thailand’s patent office rejected the application on raltegravir, a highly priced 3rd line ARV, building on work done in 2018.
To build a cadre of scientists and lawyers:
TO SEE OUR HIGHLIGHTS MONTH BY MONTH CLICK HERE
Dmytro Sherembey, Head of Coordination Council of the 100% Life in Ukraine, takes part in street action near the appelate commercial court in Kyiv, Ukraine, concerning the 100% Life patent invalidation lawsuit on lopinavr/ritonavir
In 2019, we contested deadly patents, monitored procurement, educated activists on new medicines and ran Patent Opposition Academies for lawyers and scientists. We worked to increase national funding for intellectual property activism and trained community members on intellectual property issues in six regions. Through sustained activism and organizing, we pushed to make Hepatitis C treatment available, and ran a campaign demanding 12 countries issue compulsory licenses for the ARV dolutegravir
7 new patent oppositions filed in 5 countries: Argentina, Brazil, India, Thailand and Ukraine
Alma de León, Regional Coordinator, ITPC Latin America and the Caribbean, centre, stands in joint protest action for dolutegravir to be recognised as the preferred drug in San Salvador, El Salvador, November, 2019
“Activism is as much about people marching in the streets as it is about the effective use of data collected by communities to improve service delivery.” – Solange Baptiste, Executive Director of ITPC Global
At the center of ITPC’s work is our commitment to community-led treatment education. We support people living with and affected by HIV to have the knowledge and tools to take charge of their health and futures. Our Treat People Right portfolio continued in 2019 to help activists increase their knowledge around HIV medicines and catalyze grassroots advocacy.
In 2019, we expanded our Treat People Right program to examine the pros and cons of widespread adaptation of the antiretroviral drug dolutegravir (DTG). In 2018, the World Health Organization (WHO) recommended DTG as a preferred first-line treatment regimen.
Shortly afterwards, Botswana’s Tsempano study, which follows birth outcomes among women living with and without HIV, reported a higher rate of neural tube defects among babies born to women living with HIV who were using DTG at conception and during the first 12 weeks of their pregnancy. This potential safety signal led WHO to amend its guidelines pending more
information about the risk while some national ministries of health prohibited DTG use among women without consulting them.
ITPC responded to this changing context by working with networks of people living with HIV, WHO and other key global health organizations, and updating its treatment education materials to include this information about DTG. Through ITPC’s Global Activist Network, we were also alerted to a new possible side effect of DTG—weight gain. ITPC subsequently organized an online community consultation, bringing together communities with doctors, and shared the discussion outcomes with the WHO.
Vietnam G-link’s “parallel treatment model”
In Vietnam, many people trying to access HIV services faced long waiting times in overcrowded government clinics for hours on end. Men who have sex with men also said they did not feel comfortable disclosing their sexual histories and needs to regular practitioners. G-link created a hotline to refer men to other places where they could receive services like PrEP, PEP, and STI treatment. G-link also worked to offer extended clinic hours in some of these locations.
Kenya’s SWOP ambassadors
In Kenya, migrant sex workers face extreme marginalization and often are cut off from health services. They are also hesitant to report violence or assault for fear of the police or others checking their immigration status. The SWOP Ambassadors provided grassroots training for migrant sex workers on their rights and how to report abuses. The SWOP Ambassadors educated police officers and local leaders, especially village elders, on the rights of sex workers. The group also pulled together a new crisis response network, so that migrant sex workers could immediately report violence or abuse confidentially and safely, and receive referrals to services.
Indonesia’s Koalisi Satu Hati
ITPC, in partnership with Bridging the Gaps, supported Koalisi Satu Hati to conduct HCV community awareness in 9 provinces of Indonesia.
Nepal
In Nepal, ITPC supported a community organization to provide HIV/HCV/TB treatment literacy to 4,000 inmates in 3 prisons in Kathmandu Valley through 14 trainers and assistant trainers from across all 7 provinces in Nepal.
ITPC and ITPCru first began working with Kyrgyzstan’s Partnership Network Association, in 2017. Based on community research about treatment adherence gaps, ITPC and GNP+ supported the Partnership Network in 2019 to mobilize resources, resulting in new funding from the Global Fund, PEPFAR, UNAIDS and UNDP for their innovative initiatives.
In 2019, we expanded our Treat People Right program to examine the pros and cons of widespread adaptation of the antiretroviral drug dolutegravir (DTG). In 2018, the World Health Organization (WHO) recommended DTG as a preferred first-line treatment regimen.
Shortly afterwards, Botswana’s Tsempano study, which follows birth outcomes among women living with and without HIV, reported a higher rate of neural tube defects among babies born to women living with HIV who were using DTG at conception and during the first 12 weeks of their pregnancy. This potential safety signal led WHO to amend its guidelines pending more
information about the risk while some national ministries of health prohibited DTG use among women without consulting them.
ITPC responded to this changing context by working with networks of people living with HIV, WHO and other key global health organizations, and updating its treatment education materials to include this information about DTG. Through ITPC’s Global Activist Network, we were also alerted to a new possible side effect of DTG—weight gain. ITPC subsequently organized an online community consultation, bringing together communities with doctors, and shared the discussion outcomes with the WHO.
“The best help you can expect is from someone that has experienced himself or herself the same conditions. In order to manage the side effects properly you should understand how to take drugs… it was my peers that explained this to me. I was given some good advice, I tried, and I proved it to myself that it was really working out.” Umid Shukurov
Meza Masese, a community health agent with Zimbabwe National Network of People Living for HIV (ZNNP+) at the HIV clinic in Kunaka, Zimbabwe, July 2019
ITPC invests in community-led monitoring and research to gather data on access to HIV treatment and related services globally and advocate for the improvement of national health services. In West Africa, our Regional Community Treatment Observatory (CTO) was active in 11 countries assessing the HIV treatment services available at 125 health facilities.
We also opened a Southern Africa CTO in partnership with the AIDS and Rights Alliance Southern Africa (ARASA). In 2019, we monitored nine health facilities in three countries: Malawi, Zambia and Zimbabwe. Our Global Treatment Access Survey among 2,777 people living with HIV in 14 countries highlighted challenges and gaps in treatment access.
61%
To read our 2019 annual audited summary financial statement click here →
ITPC participated in numerous critical international and regional advisory bodies,
donor meetings, and scientific conferences
International Aids Conference: In July, ITPC contributed to multiple sessions at the IAC in Mexico City, Mexico and campaigned on #MakeMedicinesAffordable.
United Nations High-Level Meeting (HLM): In New York City in September, ITPC shared its networks’ perspective on universal health care coverage and HIV-related needs.
PEPFAR: At PEPFAR’s Community Monitoring Meeting in November, ITPC presented its work running the Community Treatment Observatory in West Africa.
ITPC channeled the community perspective to medical researchers
The Conference on Retroviruses and Opportunistic Infections (CROI): ITPC facilitated a session on the best interventions to support connecting people who test positive to treatment.
Africa Collaborative to Advance Diagnostics (AfCAD): At an AfCAD meeting in Johannesburg, South Africa, ITPC advocated for optimizing diagnostic networks across diseases rather than focusing on single disease models.
African Society for Laboratory Medicine (ASLM): At the Laboratory Community of Practice meeting, ITPC shared best practices on generating demand for routine viral load testing.
Two studies presented at the 10th International AIDS Society Conference on HIV Science (IAS 2019) in Mexico City on ART treatment cascades in West Africa and Zambia.
ITPC published reports, scientific journal articles and issue briefs throughout the year
Andrew Hill, et al. “Comparison of Prices of Hepatitis C Treatments to Average Income Levels in 49 Countries” accepted for publication in the Journal of Virus Eradication.
Data for a Difference report in West Africa
Missing the Target report for Kyrgyzstan and Pakistan
The problem with patents: Access to affordable HIV treatment in middle-income countries
Community and activists demand for tenofovir/ emtricitabine or lamivudine/dolutegravir and routine viral load testing – a review article
University of Cape Town – Center for Social Science Research (CSSR): Understanding Gaps in the HIV Treatment Cascade in 11 West African Countries: Findings from a Regional Community Treatment Observatory
What is DSD? (Video)
What is CTO? (Video)
Watching What Matters: ITPC Community Treatment Observatories (Video)
AIDS Data Hub: The Community Treatment Observatory (CTO) Model Explained
Journal of Health Design – Sierra Leone Community Treatment Observatory
Snapshot: UNAIDS featured ITPC’s Activist Development Program and the ITPC Regional Community Treatment Observatory in its Power to the People report
We are grateful to our donors who continue to believe in our vision, invest in the value of communities, and make our work possible. In 2019, ITPC thrived thanks to the generous support of:
Aidsfonds
AJG Foundation
Dutch Ministry of Foreign Affairs – Bridging the Gaps II
International AIDS Society
Levi Strauss Foundation
Open Society Foundations
Robert Carr Fund
The Global Fund to Fight AIDS,
Tuberculosis and Malaria
Unitaid
ViiV Healthcare
ICAP – Columbia University Mailman School of Public Health
World Health Organization
We thank the Global Board for their continued support and invaluable guidance.
Gregg Gonsalves, Chair, USA
Ava Avalos, Vice Chair, Botswana
Polokoetsile Pedro Motau, Treasurer, Botswana
Nompumelelo Gumede, South Africa
Jarasa Kanok, USA
Karyn Kaplan, USA
Nathaniel Wong, USA
We are a small, dedicated team who are proud to commit our energy, expertise, and creativity to this important work each and every day.
Solange Baptiste, Executive Director
Wame Jallow, Director of Global Programs and Advocacy
Collen Ngundu, Director of Finance
Othoman Mellouk, Intellectual Property and Access to Medicines Lead
Alain Manouan, Community Monitoring Lead
Bactrin Killingo, Treatment Education Co-Lead
Tracy Swan, Treatment Education Co-Lead
Helen Etya’ale, Program Officer
Gerard Best, Interim Program Impact Manager
Pedro Garcia, Monitoring & Evaluation and Research Manager
Mercy Motasi, Executive Assistant
Khathutshelo Musekwa, Accountant
Ilene Boshielo, Finance and Administrative Assistant
Sergiy Kondratyuk, Unitaid Program Manager
Detrich Peeler, Unitaid Partnership Officer
Morgane Ahmar, Unitaid Partnership Officer
Leonard Moyo, Unitaid Grants and Compliance Manager
Nothando Moabi, Unitaid Grants and Compliance Officer
Elizabeth Tejada, Director of Finance and Administration (Until June 2019)
Trisa Taro, Program Impact Manager (until May 2019)
Norma Masheleng, Finance Manager (Until March 2019)
Nigel Ndwekere, Finance Manager (Until September 2019)
