Interview: ‘pDTG is life-saving, you need it in every child’s hand’
Interview: ‘pDTG is life-saving, you need it in every child’s hand’
Maurine Murenga is a paediatric AIDS activist and founder of the Lean on Me Foundation Kenya. Leveraging her own lived experience, she successfully advocated for access to pDTG in Kenya and will not stop until the world is a better place for women and children living with HIV to live. At AIDS2022, Aidsfonds had the opportunity to interview this inspiring activist about her work and motivation.
Where does your motivation and your passion come from?
I was diagnosed with HIV over 20 years ago. At a time when there was no treatment, I was expectant with my child and therefore unable to prevent the infection to him. The only therapy we received was that one which prepared us for death. It was scary. In 2004, adults began receiving antiretroviral therapy to prolong their lives but there was no formulation for children. It was a hard decision for mothers to take lifesaving treatment and watch their children die. We had to secretly administer the adult medication to our children.
The scary experience encouraged me to join advocacy groups and amplify the voices of children, so that no other mother, no other child passes through the challenges we went through. My passion is to make this world a better place for women and children living with HIV to live in.
How is the transition to pDTG advancing in Kenya?
In Kenya, despite the challenges posed by COVID-19, our country procured paediatric dolutegravir or pDTG. Those of us working with children living with HIV were exited and relieved. This was a game changer and children were going to be smoothly transitioned from sub-optimal to optimal treatment. This was supposed to be the drug that would support children to achieve viral suppression.
However, we got another slap in our face as a condition was placed by the Ministry of Health, requiring children be transitioned to this better drug only after viral load monitoring. Unfortunately the country was facing an acute shortage of viral load monitoring reagents. This caused such a delay and a missed opportunity of saving lives of our children. Especially because we had challenges with children being non responsive to lopinavir and ritonavir syrup which also requires cold storage, being that it is heat sensitive and many families do not have refrigerators.
Can you share a story of how your advocacy is very person-centred?
Our experience with Denis, a child to one of our adolescents, was very heart breaking. He could not tolerate the available combination of lopinavir and ritonavir (Kaletra) syrup. We saw him move from a happy bubbly baby to a frail sickly child. Our efforts to get him shifted to pDTG was seeming futile because we could not get his viral load report. None of the health facilities had reagents to monitor viral load. It was a very painful experience. Looking at a child die is not easy.
I personally went with Denis to the Ministry of Health offices, demanding an action to be given on how to save this life. I told them: ‘This child I'm holding is dying, just because of your directive that he should not be given a better drug until you know the viral load. We don't have reagents for viral load. Can you call his health facility and allow them to enrol this child on paediatric DTG?’ And when they looked at him, they made that call. And then he was initiated on pDTG. Denis is now doing well on treatment. The Ministry of Health is now flexible in their guidelines especially in transitioning children from sub-optimal to optimal treatment.
Our advocacy is actually very person-centred. It is very targeted. Because we know where the problem is, we know who is disproportionately affected and we have the solutions. We are leveraging our own lived experience to be able to inform the policies that impact our children.
Was Denis an exception or did they change policy for all the children?
Denis’ story led to a lot of programmatic changes, because now they were looking at all children, and prioritising those that are not responsive or not doing well, and enrolling them on pDTG.
We still have a lot of work to do to ensure that all children are transitioned to pDTG. This goes beyond addressing health facility policies. We have to be deliberate in addressing stigma and human rights violations in both our communities and health facilities. Human rights and gender inequity have been identified as barriers. So much has been said about stigma yet very little investments have been made to address those. When caregivers feel stigmatized, it trickles down to barriers to access to services for children living with HIV. Some of the children are also stigmatized by the caregivers or in learning institutions hence they do not access the services they require. This is what Lean on Me Foundation is all about – to address these barriers. When we finally get the children better services, they're able to enjoy their life as children, they're able to meaningfully get involved in their education, in their growth, and every other thing. We need children living with HIV to thrive. pDTG is a life-saving commodity, you need it in every child's hand.
How is your son doing today?
My son is doing really well thanks to having an empowered mother, thanks to advocacy and the progress the world had made. Thanks to science and innovation and to children’s medicine and diagnoses. However, it's not all children around the world, that are able to have empowered parents that can support them to beat the barriers and access these healthcare services. That is why I wanted to go beyond just being a mother to my child, and being a mother to all those many children living with HIV that have challenges in accessing services.
What can Aidsfonds do to support this advocacy?
Children are a forgotten generation in the HIV response. Most programs follow them up to 18 months after birth and then the health monitoring of children stops immediately. Those that live with HIV are transitioned to adult HIV clinics hence nobody ever monitors their growth, their under-development or any other mental health issues they face. Nobody ever cares to see if they are thriving, or dying. In most countries, the data is not clear because it is lumped up with adolescent data. It is very important that we have a deliberate focus on the care continuum of children living with HIV. The Lean on Me Foundation can partner with Aidsfonds to ensure that we are giving care for these children.
I really salute Aidsfonds for taking the bold step to focus on this area that many do not want to focus on. It's not the big donors. It's not the pharmaceutical company. It’s the focus on children by Aidsfonds that is a good accelerator towards ending HIV as an epidemic. If we support this generation to be healthy and to thrive, we are actually building a very solid, healthy generation in future. It is a solid investment. And this is an investment that Aidsfonds will never regret having made.
Maurine Murenga is executive director and founder of the Lean on Me Foundation that promotes access to healthcare and emotional support for adolescents and children living with HIV and/or tuberculosis. She is a well-known speaker at The Global Fund. Her work with Kenyan communities advances antiretroviral treatment. Maurine is involved in the recently launched End Paediatric Aids in Children by 2030 initiative (EPIC).