Children should come first when it comes to the right to health
A conversation with Chip Lyons
Chip Lyons is the President and Chief Executive Officer of the Elizabeth Glaser Pediatric AIDS Foundation (EGPAF), the world’s leading organization committed to the global elimination of paediatric HIV. EGPAF has been fighting for children’s equal rights in the HIV response since 1988. Nearly 30 years after Elizabeth Glaser’s own daughter died of an AIDS-related illness, far fewer children are on treatment than adults, and children on treatment are less healthy, leading to higher mortality rates.
What does the right to health mean to you?
EGPAF’s message is simple: children living with, or at risk of acquiring, HIV have the same rights as adults, and should benefit equally from innovations in HIV testing, treatment and services.
The right to health is about creating broader circumstances in which health is attainable for everyone. This means erasing disparities that, while technically external to the health-care system, have tremendous impacts on how people enter and interact with that system. Eradicating stigma, promoting gender and educational equity and increasing social protections for vulnerable populations — especially children and adolescents — are all aspects of the right to health. If it’s not safe, socially acceptable, convenient or affordable for people to access doctors and medicines, the right to health is an empty promise.
What is preventing children from being able to exercise their right to health?
To date, community and global health leaders have not created the expectation that children should come first when it comes to exercising their right to health. Such an expectation would open doors to access, treatment and care for children.
There are a number of factors that interfere with children’s right to health. Stigma and discrimination can discourage children from seeking medical interventions, social services and education. While stigma is a challenge for all people with HIV, it weighs particularly heavily on children, whose access to health care depends on adults, who may be influenced by discriminatory attitudes. Even when children are connected to care, they are often prioritized below adults, with stock-outs of paediatric antiretroviral formulations occurring more frequently than stock-outs of adult medicines.
Are there additional barriers for girls to exercise their right to health?
Girls do face additional hurdles in exercising their right to health. The risk of acquiring HIV drops the longer girls stay in school, yet persistent societal discrimination against girls contributes to unequal access to education. Economic pressure to engage in transactional sex, lack of freedom regarding health decisions within families and gender-based violence also contribute to girls’ startlingly disproportionate representation among new HIV infections.
Inadequate social protections make these and other barriers to health virtually insurmountable — not just for girls, but for all children. For example, lack of sufficient nutrition and water exacerbates health challenges for children living with HIV, particularly because antiretroviral therapy is extremely difficult to tolerate on an empty stomach.
What more can be done to make sure that children can access services?
Making the right to health a reality for children will require comprehensive action on the part of leaders and policy-makers around the world.
Key stakeholders — global, national and local — must strive to ensure that effective programmes are in place to find children exposed to HIV, test infants early and repeatedly, initiate children on treatment, provide proper counselling to caregivers and older children and use all possible avenues to encourage long-term antiretroviral therapy adherence.
Enactment or amendment of antidiscrimination legislation to prohibit discriminatory acts against people living with HIV is an essential tool in driving health access. Active enforcement of such laws, alongside public political messages against stigma, HIV awareness and advocacy campaigns, health-care worker training and community sensitization programmes, can increase children’s access to HIV services by reducing discriminatory actions by members of the community. Social protection programmes for the most vulnerable children are also effective, particularly those heading their own households or otherwise without legal guardians. These programmes include nutrition assistance for all children, and specific interventions for girls that will reduce their likelihood of being forced into early marriage, relationships with older men, transactional sex or prostitution, which increase their risk of contracting HIV.
Do you think the situation has improved at all over the past 20–30 years?
With the dramatic improvement in the health of children under five years of age over the past 20–30 years, the improvement for children in the HIV context should be more dramatic. If 90% of children in need globally are immunized, why aren’t 90% of HIV-positive children virally suppressed?
In 1990, there was no medicine available to prevent mother-to-child transmission of HIV, nor save children born with HIV. Furthermore, the health-care infrastructure in many African states was not sufficient to manage the widespread testing, treatment and care needed for the prevention of mother-to-child transmission of HIV. Twenty-seven years later, the tools exist to eliminate mother-to-child transmission of HIV, and countries have made enormous strides in developing effective health infrastructures. And political support has been strong. Since the 2010 rollout of the Global Plan towards the elimination of new HIV infections among children by 2015 and keeping their mothers alive, the number of new paediatric infections has been reduced by 53% in the 21 priority countries.
In 2016, a successor framework was launched — Start Free, Stay Free, AIDS Free. It focuses on accelerating progress towards ending new HIV infections among children, finding and treating children, adolescents and mothers living with HIV and preventing new HIV infections among adolescents and young women.
More must be done to uphold children’s right to health, especially access to early testing, quick linkage to treatment and long-term support to stay on treatment.
EGPAF is the global leader in the response to paediatric HIV and has reached more than 27 million pregnant women with services to prevent transmission of HIV to their babies. Founded in 1988, EGPAF today supports activities in 19 countries and more than 5000 sites to implement prevention, care and treatment services, to further advance innovative research and to execute global advocacy activities that bring dramatic change to the lives of millions of women, children and families worldwide.
Read more in UNAIDS’ new report Right to Health.
