The invisible generation - why are the deaths of adolescents living with HIV being forgotten?
New coalition calls for urgent response to expand treatment and care for adolescents living with HIV
May 23, 2014
The World Health Organization released a report last week that reveals HIV is the second leading cause of death amongst adolescents
aged 10-19 globally, and the number one cause in Africa. [1] Adolescents are
increasingly dying at a time when HIV-related deaths are decreasing for all other age groups.
In light of this stark statistic, a new coalition was formed to catalyze immediate change in the HIV response for adolescents.
Networks of people living with HIV, HIV treatment organisations and youth groups have united with researchers, clinicians
and global health agencies to address gaps in the treatment and care needs of adolescents living with HIV, including
the intellectual property barriers that prevent adolescents from accessing essential medicines. Key organizing
partners include the Global Network of People Living with HIV (GNP+) , the
Global Network of Young People Living with HIV (Y+) ,
the International Treatment Preparedness Coalition (ITPC) ,
The PACT for Social
Transformations in the AIDS response , and UNAIDS .
" The needs of adolescents living with HIV have been ignored for too long," said Suzette Moses-Burton, Executive Director
of GNP+. " The problems we are facing today, which include the increasing number of HIV-related deaths among adolescents,
are due to the failure of the HIV response to provide optimal treatment for children, as well as to understand their
specific requirements on disclosure, adherence, and other support needs as they transition to adolescence and adulthood ."
The coalition has outlined six key areas to improve access for the 2.1 million adolescents living with HIV globally to ensure that
their rights to health and dignity.
The coalition calls for:
1. Increased access to HIV testing
The majority of adolescents are still unaware of their status and often present at health facilities with a severely compromised
immune system. Provide convenient, appropriate and preferred testing options, lower the age of independent consent and create
demand by expanding promising practices.
2. Expanded treatment options for adolescents
The lack of effective and easy-to-administer paediatric formulations affects children into adolescence as long-term ART side
effects and drug resistance due to sub-optimal treatment regimens take effect. Lack of treatment, monitoring and support
services, and the high cost of second- and third-line regimens, create adherence issues.
3. Adapting health services to adolescents' needs
Adolescence is a time of critical transition resulting in unique needs - specialist approaches are needed for treatment
education and treatment fatigue, social and adherence support, stigma-free sexual and reproductive health services, and
to improve transition to adult care services.
4. Mobilising social support
Adolescents and families need more information and guidance for HIV disclosure, to assess risk and manage reactions from friends,
family and sexual partners, especially in the context of countries that criminalize HIV non-disclosure, transmission and exposure.
Stigma and discrimination, including self-stigma, remain huge challenges.
5. Empowering adolescents
Adolescents need to be meaningfully involved in reviewing, adopting and implementing the WHO 2013 ART guidelines in countries,
as well as in the design and delivery of services, and in the crafting of messages directed at them.
6. Better data to improve policies and programmes
Higher-quality data and ongoing research on adolescent outcomes are urgently needed, disaggregated by gender, key population and
age group, in order to facilitate the creation of global evidence for international guidelines. Research should also investigate
causes and issues around treatment failures and loss-to-follow-up.
Christine Stegling, Executive Director of ITPC, a global network of advocates working on treatment access, said: " Adolescents
living with HIV today are simply running out of options as second- and third-line HIV treatment regimens remain unaffordable and
unavailable in many countries. We need to foster a broad movement that cuts across sectors to ensure the success of this
agenda and prevent the unnecessary deaths of adolescents living with HIV ."
Lumumba El-nasoor Musah, Co-chair of the SRH working group of Y+, said: " Young people and adolescents living with HIV are at
the heart of our strategy - they are the very ones who know how services can be better shaped to suit their needs, and what is
missing from current services ."
To read more about the coalition, please access the full statement here.
To download a pdf of the media statement, click here.
-ENDS-
For more information, please contact:
GNP+: Victoria Clarke, External Relations & Communications Officer
vclarke@gnpplus.net
ITPC: Caitlin Chandler, Communications Officer
Caitlin.chandler@gmail.com ;
Y+: Lumumba El-nasoor Musah, Co-Chair: SRH Working Group
msmusah71@gmail.com
For more information about how you and your organisation could get involved in this coalition please contact : ALHIVcoalitionforaction@gmail.com
[1] World Health Organization 2014
Source: The Global Network of People living with HIV (GNP+)
The Global Network of People living with HIV (GNP+) is the global network for and by people living with HIV.
GNP+ advocates to improve the quality of life of people living with HIV. Driven by the needs of people living with HIV worldwide, GNP+
supports people living with HIV through their organisations and networks. GNP+ works to ensure equitable access to health and social
services, by focusing on social justice, rights and more meaningful involvement of people living with HIV in programme and policy
development - the GIPA principle. www.gnpplus.net
"Reproduced with permission - Global Network of People living with HIV (GNP+)"
Global Network of People living with HIV (GNP+)
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