In the remote mountains of South Africa, Matsepo rises at 3 am to start the day. She has important work to do, work which is a matter of life or death. Such an early start is necessary for her to wash, get dressed, and prepare tea before waking her feverish, emaciated 5 year-old granddaughter Ntabaleng. She hoists the fairy-light girl onto her back to begin the four-hour walk to the nearest clinic. Ntabaleng's own mother cannot do this because she is dead, a victim of the same drug-resistant tuberculosis (DR-TB) that is responsible for Matsepo's daily journey with her precious granddaughter. Ntabaleng must go to the clinic for treatment because she has to receive a daily injection as part of her DR-TB therapy. Although it's usually difficult for her to even muster the energy to lift her head, she wails as soon as the needle pierces her raw buttocks. "Make it stop grandma," she sobs, "make it stop."
Thousands of miles away, Alma, too, wakes in the gloaming hours. She haunts the halls of a hospital in California where her son will soon face his own daily battle with the monster called DR-TB. Nine-year old Antonio has drawn a picture of himself, decked out in a superhero cape, "socking it" to the TB villain he has depicted as an angry swirl of black, green and red. But Alma knows this brave boy will soon be reduced to tears as he chokes back the 19 tablets he takes daily. The yellow ones make him vomit, and as she wipes his sweaty brow with a cool cloth, Alma hears his piteous whisper. "Make it stop mom," he begs, "make it stop.
Thursday, March 24 has been designated World TB Day, and although such commemorative events are ubiquitous, a day of global reflection and action may be most pertinent in the case of TB, since at least a third of the world's population are infected with the bacteria that causes this sickness. Unless radical action is taken, DR-TB is one of three infectious diseases that will kill more people than cancer by 2050. It is estimated that 33,000 children fall ill with DR-TB each year. Another 1 million are infected with the germ annually as it spreads through the air from adults to children, whose main risk factor is breathing. Many of these children will go on to become sick and die without ever knowing what hit them.
"We must do everything in our power to end their suffering. It is up to us to make it stop."
Believe it or not, Ntabaleng and Antonio are two of the lucky children in this epic struggle for health against DR-TB. They were actually diagnosed and are receiving treatment. But can kids like Ntabaleng and Antonio whose suffering is so apparent really be considered fortunate? Blessings may be relative, but when one considers the dire situation of pediatric DR-TB, it is hard to conclude that there are any winners.
Here is the state of the art: diagnosing DR-TB in children still often relies on ancient technology, and pediatric patients have to undergo painful procedures--such as tracheal or gastric aspirates--to even get specimens for testing. If they are diagnosed, these children will face significant challenges in accessing treatment. In fact, although approximately 33,000 cases of DR-TB occur each year in children, fewer than 1,000 of these children are ever offered appropriate therapy. And this therapy--no matter where the child lives in the world--is brutal. It consists of multiple medications (including the daily injection) that can cause hideous side effects, such as deafness, psychosis, and liver failure. It is a testament to the resilience of children that they actually do better than adults with this grueling medication regimen. But this difficult daily therapy which lasts for 18 to 24 months places a heavy burden on their tiny shoulders and on the shoulders of those who care for them. And almost no children who have been exposed to DR-TB are offered access to post-exposures measures that could stop them from ever becoming sick in the first place.
Recent advances in the treatment of DR-TB have brought great hope to adults suffering from the disease. Perversely, children have been left behind when it comes to implementing these innovations. There are two new drugs that have been approved by stringent regulatory authorities and recommended by the World Health Organization for the treatment of DR-TB. The WHO recommendations, however, are only targeted at persons above the age of 18 years, even though one of the new drugs--delamanid (Otsuka Pharamceuticals)--has been shown to be safe and effective in children as young as 6 years of age. Another problem for children with DR-TB when it comes to delamanid--a drug that could potentially replace the excruciating injection--is that the drug is only registered for use in the European Union, Japan, and South Korea. Registration for delamanid is not even pending in most of the countries in which it was tested, including South Africa. Nor is it pending in the United States. And until such registration happens, most children who desperately need this drug will have to go without.
World TB Day becomes a façade if the events that mark it are not tied to specific actions. The children affected by DR-TB have given us a clear mandate to which we should all pledge ourselves on this commemorative day: make it stop. Demand that new drugs for children be registered; that global guidelines be rapidly updated to endorse better treatment for children; that donors prioritize funding initiatives that focus on this vulnerable population; that post-exposure prevention measures become a part of routine care. When it comes to DR-TB among these tender casualties, we must do everything in our power to end their suffering. It is up to us to make it stop.
This post is part of the 'A Look At The Isolation of Airborne Cancer' series produced by The Huffington Post for World TB Day. This series will look at the devastating issues surrounding tuberculosis, the number one infectious killer. To follow the conversation on Twitter, view #WorldTBDay.