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This quarterly newsletter shares learnings and highlights of the CHAI-Unitaid Optimal Community Advisory Board (CAB) and its members to help share best practices and foster collaboration to strengthen community's role in HIV treatment optimization planning and rollout.
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QUOTE OF THE QUARTER
“While the role of civil society is critical in HIV treatment optimization, civil society has not always had the opportunity to be active in these discussions on a national level. Representation is important in policy decision-making to ensure access to better treatment for people living with HIV (PLHIV)." - Imelda Mahaka, Community Advisory Board (CAB) representative from Zimbabwe.
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GLOBAL SPOTLIGHT: ANNUAL CAB MEETING IN SOUTH AFRICA LAUNCHES NEW COMMUNITY INITIATIVE FOR DIAGNOSTICS AND ADVANCED HIV DISEASE
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The Story: Unitaid, CHAI, and AfroCAB organized a three-day meeting in Pretoria, South Africa, in March with over 40 participants from 12 countries to discuss civil society's role in building demand around HIV treatment, diagnostics, and advanced HIV disease (AHD).
The Impact: The meeting provided the opportunity for Optimal CAB members and members of the newly formed Diagnostics CAB to discuss community perspectives on optimal treatment and access to HIV diagnostic services for treatment monitoring and infant diagnosis, learn about the latest clinical and technical updates for priority products, and identify opportunities for collaboration going forward that will help catalyze tenofovir disoproxil fumarate/lamivudine/dolutegravir (TLD) uptake by patients. The meeting also kicked off CHAI and Unitaid's engagement with the community through the newly launched AHD initiative. Stay tuned for next quarter's newsletter featuring a global highlight on the March 2019 Southeast Asia Regional Community meeting that aimed to translate learnings and best practices from the dolutegravir (DTG) adoption in Africa to the Southeast Asia region.
“The information and knowledge gained in these [annual CAB] meetings has been invaluable. The knowledge acquired has enabled the CAB members to be effective in their work and bring this knowledge back to others. It felt like we were the experts.” – Annual CAB meeting participant
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WHAT THEY ARE
Communities are holding consultations specifically with women, the population directly affected by the potential NTD safety signal for DTG, to listen to their opinions, elevate their voice, and feed into national decision-making.
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COUNTRY SPOTLIGHT: ZIMBABWE
The Story: In 2018, Zimbabwe held 14 community dialogues with 270 women living with HIV across 8 provinces to engage them on the use of DTG and access to sexual and reproductive health services and to inform the policy adaption process led by the Ministry of Health and Child Care (MOHCC).
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The Impact: The highly diverse group of women provided feedback on contraception services, healthcare systems, and access to optimal treatment that was compiled into a report that was presented to the MOHCC in a national adaptation meeting that helped inform the new guidelines, in which TLD is now included as the preferred first-line regimen. The MOHCC also requested the community's continued involvement in the rollout and implementation of the guidelines.
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"I appreciate the fact that, this time, the MOHCC has engaged us and informed us on the drug changes that are coming, as previously we were just switched suddenly. I have been on treatment since 1996 and have been switched several times without any forewarning." - Meeting attendee
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TREATMENT LITERACY MEETINGS AND WORKSHOPS
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WHAT THEY ARE
Communities are holding treatment literacy meetings and workshops to educate diverse groups of civil society members on new optimal HIV treatments to increase their awareness and understanding of these treatments and to discuss their perceptions of barriers and opportunities in new product introduction.
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COUNTRY SPOTLIGHT: TOGO
The Story: CAB members in Togo organized three therapeutic education sessions for teens and women in prevention of mother-to-child transmission (PMTCT) programs in November and December of 2018 to discuss antiretroviral treatment (ART), with the main purpose of educating attendees about optimal treatments and available services.
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The Impact: After the sessions, the 179 adolescents and 177 women in PMTCT that attended had a better understanding of ART and which regimens are more effective than others, thus helping them make more informed decisions regarding their HIV treatment and care.
"These meetings provided a safe space for vulnerable populations to discuss their treatment and side effects with peers without fear of being sent home or stigmatized, which allows them to learn more about their rights and services and improves access to treatment." - Noélie Koevi-Koudam, CAB member from Togo
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TREATMENT LITERACY MATERIALS
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WHAT THEY ARE
Communities are developing information, education, and communication materials to improve civil society's understanding of new HIV treatment options and generate demand for new optimal products.
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COUNTRY SPOTLIGHTS: NIGERIA, MALAWI, BENIN, AND TOGO
The Story: CAB members in Nigeria convened a group of community members to create treatment literacy videos and print materials to educate patients on ART. Similarly, civil society groups in Malawi convened to develop treatment literacy materials and CAB members in Benin and Togo produced radio programs to inform the public on the availability and use of new antiretroviral drugs (ARVs).
The Impact: In Malawi, these treatment literacy materials were adopted by the Ministry of Health as the official national TLD treatment literacy materials. In Nigeria, both print materials and videos span a wide range of topics, including adherence, side effects, pregnancy, and changing drug regimens, and will be played and distributed in facilities across the country so that patients can make informed choices about their health.
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"I think TLD should be made available to everyone, regardless of gender and age, but with appropriate education and support. Women living with HIV have the right to access better products for quality of life." - Participant from Malawi
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CAB MEMBER SPOTLIGHT: JACQUE WAMBUI
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Q: What was your impression walking away from the initial CAB meeting back in 2017 after first learning about DTG?
A: I could not even pronounce Dolutegravir! I keep telling my fellow CAB members that I literally had to take “night classes” to practice pronouncing it. Leaving Dakar, I was so excited because I had to go back and tell my community about this drug.
Q: How have you grown over the last two years through your work in the CAB?
A: I have grown immensely! I have more knowledge about the treatment landscape, more confidence to approach/lobby/engage stakeholders, and, of course, I grow through meeting different people who help me view advocacy on different levels.
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Q: What advice would you give to other community members who are intimidated about learning the technical aspects of HIV treatment optimization?
A: Read! Read! Study! Keep an eye on what is working around the treatment world. Communities need this information and we are at the place where we receive the chance to disseminate it to them. They depend on us to provide them with it. Explore and seek representation in spaces where one can learn and grow.
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With questions or to share information, please contact: Kenly Sikwese, AfroCAB, at ksikwese@gmail.com, Lameck Zulu, AfroCAB, at lamzey1@gmail.com or Benvy Caldwell, CHAI, at bcaldwell@clintonhealthaccess.org. You can find additional tools and resources on HIV i-base, or on the HIV New Product Introduction Toolkit, which includes resources like the Nigeria Pocket Size Patient Literacy Material on DTG and HIV i-base's ART Pregnancy & Women's Health,
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This work was made possible through the support of Unitaid.
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The Community's Corner
