THE KIGALI DECLARATION
(read in French, Portuguese or Russian)
WAKE UP, OUR CHILDREN ARE DYING.
Our governments; PEPFAR; the Global Fund to Fight AIDS, Tuberculosis and Malaria; the UN family; and pharmaceutical companies are failing children with HIV. We are outraged that our children are dying without access to timely HIV diagnosis; durable, powerful, and affordable treatment; and community-led service delivery that ensure retention on treatment. We are outraged that our leaders are content to look away.
We are outraged that mothers of HIV positive and HIV exposed children are suffering the effects of a treatment retention crisis, resulting in harm to their health as well as avoidable perinatal transmission during pregnancy and breastfeeding.
It is time to face tough facts: because the numbers of children aged 0-14 living with HIV—1.8 million globally—are dwarfed by the numbers of adults living with HIV, their health needs are being ignored.
Epidemiologically, the target of epidemic control supported by PEPFAR, the Global Fund and national governments can be achieved even if children with HIV die.
Moreover, children are not seen as being likely sources of onward transmission of HIV. The prioritization of HIV incidence reduction, by definition, ignores the urgent treatment needs of HIV positive children.
Politically, the new era of ‘Universal Health Coverage’ (UHC) is a hollow promise to children with HIV who are suffering and dying without access to point of care early infant diagnosis (POC EID) and treatment—interventions that can be relatively complex to administer and expensive, and defy the focus on “basic service delivery packages” that are too often the hallmarks of Universal Health Coverage. The outrageously poor health outcomes of children with HIV show us how far from reality the call for Universal Health Coverage is. Likewise, the needs of HIV positive pregnant and breastfeeding women for comprehensive community-led support for their own health and the health of their pregnancy is precisely the type of essential service that formal health systems too often fail to provide.
Vertical transmission rates are stalled at 12.7% globally. Only 54% of children 0-14 years old have access to treatment to halt rapid disease progression and death, and to secure a chance at a long lifespan. Even worse, treatment enrollment has flatlined at this dismally low global treatment coverage level. Between 2009-2010, 96,000 children aged 0-14 years were enrolled on treatment. But between 2017-2018, there has been a net increase of only 2 per cent.
Globally, only 52% of children born exposed to HIV have access to an early infant diagnostic test within the first two months of their lives, and of those who are tested only 19% receive results in 30 days—a flagrant disregard for WHO’s scientific guidance that no person should have to wait longer than four weeks for any diagnostic test result. In addition, HIV-exposed infants do not receive the long term care and follow up they require.
Women with HIV are still at risk of poor clinical outcomes and transmission of HIV during their pregnancies, deliveries, and breastfeeding because health systems are not providing the community-led support they need—they experience stigma, discrimination, long wait times, poor health worker attitudes, and other injustices that drive them from care. This is particularly true for pregnant sex workers, drug users, lesbians, and trans people who are at higher risk of marginalisation, criminalization, harassment and violence that fuels poor health outcomes and onward transmission during pregnancy, delivery and breastfeeding. HIV programs for sex workers and women who use drugs must be more family oriented and child friendly.
In several countries such as Uganda, Kenya, and Tanzania, new data show troubling indications of increased numbers of perinatal HIV infections, signalling risk that funding cuts and PEPFAR’s “geographic prioritization” mean children—and their communities—are facing a resurgence of perinatal HIV.
Moreover, with poor screening, diagnosis and treatment of HIV, adolescents with HIV are facing increasing mortality rates. This too is completely unacceptable.
These stark inequities are more than unfortunate–they amount to discrimination and neglect. We need an end to business as usual. Our demands are:
● Pregnant and breastfeeding women at risk of HIV infection require access to PrEP and other high impact prevention measures, as well as HIV testing during pregnancy—particularly critical given the increased risk of acquisition of HIV during pregnancy.
● Women face higher risks of sexual and physical violence when they are pregnant and require health systems to respond to their needs for access to justice.
● All children born exposed to HIV must have point of care early infant diagnosis (POC EID). Conventional HIV testing for newborns is substandard and defies WHO’s scientific recommendation that all people should have access to diagnostic test results within four weeks of life.
● Children with HIV need powerful treatment regimens that can deliver viral load suppression despite high rates of background drug resistance. Given available regimens, for now this means raltegravir granules-based regimens for neonates, solid formulations of lopinavir-ritonavir-based regimens for children under 20kg and dolutegravir-based regimens for children over 20kg. Soon dispersible dolutegravir will be available for younger children and countries should be planning now for rapid introduction of improved regimens.
● Children also need effective screening, diagnosis, prevention and treatment for the main threats they face such as paediatric tuberculosis.
● Children with HIV and their caregivers need HIV programs that guarantee all HIV positive children are provided community-led service delivery interventions that ensure caregivers can successfully administer paediatric treatment, such as supportive caregiver training, counselling and comprehensive loss to follow up prevention.
● National programs must develop public 95 95 95 targets for 2020 at national, sub-national and local levels together with public tracking of progress and setbacks, and must disaggregate their program data by age.
● PEPFAR must support scale up of POC EID and powerful, durable pediatric treatment as a condition of COP 2020 implementation, and must be funded to course-correct failing national programs funded through COP 2019, that rely on sub standard interventions such as conventional EID and service delivery approaches that disregard the needs of their caregivers.
● The Global Fund to Fight AIDS, Tuberculosis and Malaria must support countries to use the 2020-2022 implementation cycle to scale up POC EID and powerful, durable pediatric treatment.
● All governments must deliver rapid increases in HIV funding to address the pediatric HIV emergency, so that pediatric programs no longer hide behind the excuse of insufficient funding. This funding ‘surge’ will provide all of the interventions that children exposed to HIV and their families require: immediate POC EID, powerful and durable treatment regimens, prevention and treatment of the leading killers of children with HIV, and funding to increase the numbers of trained, well paid professional and community health workers who can deliver the comprehensive care and support children with HIV and their caregivers require.
● For pharmaceutical companies including Mylan, ViiV, Cipla, Gilead we demand affordable prices for pediatric treatment, and a robust R&D plan for improved child-friendly treatment formulations.
We honor the health workers and communities who have struggled against tough odds on the front lines of service delivery to deliver HIV diagnosis and quality treatment to children–often with no recognition, poor conditions, and poor remuneration.
We must secure the funding, the policy shifts, and the ambition to add to their ranks–so that all children exposed to HIV secure rapid diagnosis, and all children living with HIV have a normal healthy lifespan.
WE CAN SAVE OUR CHILDREN’S LIVES.
Endorsers include [list in formation]:
Access Care Treatment and Support GHANA
ACTS 101 UGANDA
Appropriate Revival Initiative for Strategic Empowerment (ARISE) Ntungamo-Uganda
Asia Pacific Council of AIDS Service Organizations
Bridges of Hope Training
Brighton and Sussex Medical School
Cameroon Network of Positive Youth
Cameroon Youth Network
Coalition of people fighting HIV/AIDS and TB in Migori Kenya – COPFAM
CPAR Uganda Ltd
Donate A Pad Africa
DANDORA COMMUNITY AIDS SUPPORT ASSOCIATION
Drugs for Neglected Diseases Initiative (DNDi)
Eddie Pharmaceuticals Ltd, Uganda
Fiji Network for people living with HIM (FJNPLUS)
GATE – Global Action for Trans* Equality
Global Network of People Living with HIV (GNP+)
Grupo Este Amor
Integrated Health and Dynamic Development Foundation (IDDI)
International AIDS Society
International Indigenous Working Group on HIV & AIDS
International Network of People who Use Drugs (INPUD)
International Treatment Preparedness Coalition (ITPC Global)
John Snow International, Inc
Kenya Network Of People Who Use Drugs (KeNPUD )
Médecins Sans Frontières / Doctors Without Borders
Most at Risk Young Mothers and Teenage Girls living with HIV Initiative
MPact Global Action for Gay Men’s Health & Rights
Nyando Community Justice Center
Organization for Health in Sustainable Development (OHISD)
Pamoja TB Group
Partners In Health
Partners In Health
Positive Young Women Voices
Progrès Santé Sans Prix “PSSP”
Radanar Ayar Association
Réseau camerounais des adolescents et jeunes positifs (RéCAJ+)
Rumah Cemara, Indonesia
Signing as an individual
SRHR Africa Trust (SAT)
Tanzania AIDS Forum
Tanzania Network of Women Living with HIV and AIDS (TNW+)
The Desmond Tutu HIV Foundation (DTHF)
Trans and Intersex Rising Zimbabwe
Treatment Action Campaign
Tunisian association of Positive Prevention (ATP+)
Uganda Key Populations Consortium (UKPC)
Union Congolaise des Organisations des PvVIH (UCOP+)
Victoria Point CBO
Victory Post Test Group, Kisumu County, Kenya
Women Fighting AIDS in Kenya (WOFAK)
Wote Youth Development Projects
Paediatric-Adolescent AIDS Treatment for Africa
Réseau camerounais des adolescents et jeunes vivant avec le VIH (RéCAJ+)
Womenplus Against TB and HIV in Kenya
Paediatric-Adolescent Treatment Africa
Paediatric AIDS Treatment for Africa
Paediatric-Adolescent Treatment Africa (PATA)
Paediatric AIDS Treatment for Africa
Children’s AIDS Fund Uganda
ORPHELINS SIDA INTERNATIONAL
Women Fighting AIDS in Kenya
Love to love organization
RESEAU NATIONAL DES ONGs POUR LE DEVELOPPEMENT DE LA FEMME ( RENADEF )
Africa Network of People who use drugs (AfricaNPUD)
Africa Network of People who use drugs (AfricaNPUD)
Chicago Women’s AIDS Project
Ccc men support group
International Planned Parenthood Federation
Era of Mercy
PF “AGEP’C” (Kazakhstan)
Fondation espoir Guinée
NGO Phoenix PLUS Russia
International Community of Women Living with HIV
БО БФ “КЛУБ”СВИТАНОК”
Community association “Supporting people living with HIV “Kuat”