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Demanding More for Children with HIV and Tuberculosis

July 17, 2012

On Tuesday, July 22nd, on, a dynamic group of women and young people who have suffered from tuberculosis and HIV will give voice to affected communities around the world by sharing their experience and views on the way forward in the fight against the two diseases, in a special streaming talk show. Tune in!   

We have all seen them.  The tens of thousands of children suffering from tuberculosis (TB) and HIV. We see them on the television commercials, the “awareness” posters, the holiday fundraising cards.   It is hard to turn away from the haunting gaze of a sick child.  Their big eyes implore us to do something. It is no accident that these children, children suffering from HIV and TB, have had their images broadcast around the world. These images come coupled with desperate pleas for help.  It is hard to say no to a kid who is suffering from a treatable infectious disease.

As an HIV and TB doctor, I have taken care of hundreds of children with these diseases on five different continents.  Multiple similarities exist among these kids, be they from the mountains of Lesotho or the orphanages of Russia. Often they are hustled into clinic on the backs of their anxious mothers or grandmothers. They are carried for hours over rugged mountains or through filthy slums.  They are sick, and hungry and exhausted. Their arrival is fraught with anxiety: worried family members, worried health providers, and other worried children circle around, wanting to help, wanting to make sure this child will be alright and live to reach his or her potential in the world.

I always try to have some toys on hand to make the experience a little easier. Toys can be easy to come by in these places, sent by compassionate, generous people who have been moved by the plight of these sick kids. It is amazing how even the sickest children around the world are similar in their love for play.  What also amazes me in its similarity is how ill equipped I—and other providers are—to adequately care for children with HIV and TB.  HIV and TB often go hand in hand, and yet when it comes to treating these diseases in children:

  • We lack the tools to make life-saving diagnoses. 
  • When we do make a diagnosis, we lack the proper medications to provide effective therapy.
  • We lack the knowledge of how best to treat children, basing medical decisions on science done only in adults, even when we know children’s bodies act very differently.

I often find myself handing these children a teddy bear, when what I should be handing out is treatment. In the clinics, this often means I have to send the children and their caregivers home with only a “best guess” at what is making them so ill.  I give them pills that have not been adequately tested to make sure they are safe and effective in children.  And the types of pills I give them have been made for adults.  So these over-burdened families often have to spend hours crushing super-sized adult tablets to coax into their dying offspring.  Or they have to watch as their skin-and-bone babies receive an excruciating injection every single day for months in an effort to keep them alive. 

You might not know it from all the pictures, but when it comes to the great advancements made in global HIV and TB care, children are being left behind. Here are the facts:

  • There are an estimated 2.5 million children in the world with HIV.  Of the two million who are in desperate need of HIV treatment, only 25% receive it.
  • There are an estimated 1 million children in the world with TB; less than half of them are ever diagnosed, and each year 70,000 children die of this curable infectious disease.
  • When it comes to TB, these numbers are really just a “best guess”; children under the age of 15 are not even counted in global TB surveys to estimate the burden of disease.

Simply stated, a majority of children with HIV and TB in the world continue to die, most of them uncounted, undiagnosed and untreated.  These children and their families deserve better.  What is happening to them is an outrage.

It is time to demand more for the millions of children around the world suffering from TB and HIV.  All children with HIV and TB deserve access to diagnosis and treatment, and the death of even a single child from either one of these diseases signifies a global failure. South Africa has committed to zero TB deaths among children, and other countries must do the same. It is time for rigorous approaches to identify the best treatment options for children.  It is time to require that pediatric formulations of TB and HIV medications be developed.  And the HIV and TB communities must work in a unified fashion to ensure that all children get the best we have to offer. 

We can no longer be satisfied with sympathy and must move to action. Children need teddy bears; but more importantly, they need medications. When we see their haunting images looking at us, we need to look back and hold their gazes with the confidence that we are finally serious about stopping TB and HIV in kids.

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