THE FUTURE IS COMMUNITY-LED

Annual Review 2019

“COMMUNITIES ARE NOT WAITING TO BE INVITED TO THE TABLE OR INCLUDED IN YOUR STUDY, THEY ARE LEADING THE WAY.”

Solange Baptiste, Executive Director ITPC Global

A GLOBAL ACTIVIST NETWORK

“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

“Everyone talks about ‘Ending the Emergency,’ but without funding for communities that is a distant dream!”

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

“Communities are at the centre of every action. Communities are defining the indicators and monitoring the trends. Communities are determining the research parameters and leading the science. They are the ones taking the actions, coming up with the solutions, conducting the advocacy and partnering with stakeholders to bring about change.”

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:

#TREATPEOPLERIGHT

Treatment education and demand creation

#MAKEMEDICINESAFFORDABLE

Intellectual property and access to medicines

#WATCHWHATMATTERS

Community monitoring and accountability

Mission, Vision, Values

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

The ITPC Global Activist Network

AN INTERNATIONAL TEAM,

NATIONAL PARTNERS,

LOCAL ACTIVISTS

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, Chairman of the Viet Nam Network of People Living with HIV

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?

In 2005, I saw images of late-stage HIV-infected children returning home from the hospital with opportunistic infections, such as oral thrush and pain due to an inability to eat. I then joined a home-based care group helping get treatment for these opportunistic infections to children, at a time when doctors would not treat them. ARVs were not even available in Viet Nam at the time; we had to buy medicines used for adults from Thailand and bring back to Viet Nam.
What does a typical day at work look like for you?

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?

No, I’ve never been afraid to do my activism, because for me activism is not a job or hobby, it is my life. I used to say with my friend that in this HIV war, we have only one target—that is “treatment for all”—but during the process to reach our target we have to do many things that we’re not familiar with and haven’t been trained in before, but we have to do it.

GLOBAL TEAM & BOARD

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.

Year in Numbers

2777

PEOPLE IN 14 COUNTRIES

A global treatment access survey launched in April in 14 countries surveyed 2,777 people living with HIV and identified access barriers and gaps in services.

125

Health facilities monitored in 11 West African countries

TO INCREASE ACCESS TO OPTIMAL HIV TREATMENT

9 Health facilities monitored in 3 South African countries

$2696747

GRANTS TO GAN/
REGIONAL NETWORKS AND CONSORTIUM PARTNERS

COMMUNICATIONS REVAMPED

We revamped our communications, including a new website and animated videos on treatment issues

NEW PATENT OPPOSITIONS FILED

In Argentina, Brazil, India, Thailand and Ukraine

EVIDENCE-BASED RESEARCH REPORTS RELEASED

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:

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community leaders, lawyers and chemists trained from
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community leaders, lawyers and chemists trained from

TO SEE OUR HIGHLIGHTS MONTH BY MONTH CLICK HERE

#MAKEMEDICINESAFFORDABLE

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

#TREATPEOPLERIGHT

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.

Dong Do Dang, Chairman of the Viet Nam Network of People Living with HIV

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.

Read about the work we supported in communities

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.

Why peer counseling is a lifeline in Kyrgyzstan

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

#WATCHWHATMATTERS

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.

 

In ITPC monitored clinics in West Africa, the number of viral load tests performed more than doubled from mid-2018 to mid-2019, increasing from 16,532 to 33,376
In Côte d’Ivoire, ITPC successfully eliminated fees for HIV testing and treatment
In Zimbabwe, the CTO reduced by 13 days the average duration of ARV stockouts at the monitored health facilities

ITPC AROUND THE WORLD

ITPC IMPLEMENTS PROGRAMS IN MORE THAN 70 COUNTRIES

VALUE FOR MONEY

IN 2019, ITPC HAD A TOTAL OF 5.3M USD IN REVENUE.
ONLY 17% OF TOTAL REVENUE GOES TO OVERHEAD COSTS.

HOW WE USED OUR FUNDING

OUT OF ITPC TOTAL DIRECT PROGRAM COST

61%

WAS SPENT IN THE FORM OF GRANTS TO ITPC REGIONAL NETWORKS AND CONSORTIUM PARTNERS.

To read our 2019 annual audited summary financial statement click here →

KEEPING GLOBAL HEALTH ACCOUNTABLE TO COMMUNITIES

High-level advocacy

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.

Building a pathway to public health researchers

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.

Contributing to research and knowledge

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)


ITPC’s work has been cited in external publications


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

THANK YOU

DONORS

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

 

ITPC GLOBAL BOARD

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

ITPC GLOBAL TEAM

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)

> Download our full Annual Report for 2019 (PDF)

THE FUTURE IS
COMMUNITY-LED