Inter-American System Stands Up for Kids with Kidney Disease

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Photo: Gaby Miller

Last time I was at the JM de los Ríos Children’s Hospital, the moms were writing cards for the families of two kids who died that week, a predictable tragedy considering that, in 2016, the Centro Comunitario de Aprendizaje (Cecodap) asked the Venezuelan Supreme Tribunal for protection to children in the hospital. The request was denied: getting the medication, the Tribunal said, was the parent’s responsibility.

Now, families at the press conference were happy. “Justice is served,” Carlos Falcón, father of an 11-year-old at the hospital, said.

This is the result of Katherine Martínez’ effort. I met her when she helped me get inside the hospital to talk with the mothers of children suffering the medicine shortage. She’s not only director of the NGO Prepara Familia, she’s also a ray of light at the hospital: Katherine remembers everybody’s name, handing out food and medicine, singing with her guitar.

She’s rather happy announcing, at a press conference held last Saturday, that the Inter-American Commission on Human Rights granted injunctions (precautionary measures) to kidney unit patients at JM de los Rios Children’s Hospital, due to the risk they face and the damage to their health with medicine shortage and poor medical conditions.

You can read the six-page long Resolution right here.

The measure was requested on December 2017 by Prepara Familia and Cecodap, after children died from bacteria in the dialysis machines.

Thanks to this decision, the Inter-American Commission on Human Rights asked the government to investigate these deaths, requesting guarantees for the health of five children in critical condition. They also asked for the reactivation of the transplant program and asked the government to assure the medical treatment and the involvement of the families and NGOs in the decisions the Health Ministry may take.

We can’t talk about justice if something like this happens again at the hospital (…) We want a solution, no pañitos de agua tibia.

For Katherine, this is a victory. During the press conference, she always kept an eye on the families: “It’s just a small group, but we couldn’t leave the kids alone.” She remembers the names of all ten kids dead from infections caught from the machines, in a situation that went from bad to worse with the shortage of antibiotics.

“Each parent has a story, behind every name there’s a family” she reflects.

The Ministry of Health now has ten days to inform what its actions will be.

It’s an undeniable ray of hope. Judith, mother of a 12 year-old boy dead from an infection, is very skinny, but her weak voice is filled with power: “We can’t talk about justice if something like this happens again at the hospital (…) We want a solution, no pañitos de agua tibia.”

After her son died, she continued working for the rest of the kids.

“I feel justice is served,” Carlos repeated. “I don’t want to hear my daughter saying again that she is afraid to die.”

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