Tuberculosis: The world waits for a plan, patients with drug-resistant disease wait for options

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Two recently published pieces on the paucity of treatments for drug-resistant tuberculosis open with anecdotes centered on one patient each — a little girl in Mumbai, and a 39-year-old man in the U.S. A third opens in a South Africa hospital waiting room. All three zoom out from there to examine the impact of a disease ineffectively treated in one person to public health, not just in the immediate surroundings of those people, but in a country where the threat of tuberculosis, particularly drug-resistant disease has long been considered negligible.

The three pieces, Waiting for a White House Plan on Tuberculosis, in Huffington Post by Dr. Lee Reichman of Rutgers Global Tuberculosis Institute, a letter on Compassionate and optimum use of new tuberculosis drugs, by Caitlin Reed of UCLA Medical Center’s inpatient TB unit and others, and Drug-resistant tuberculosis is a global crisis . . . in The Nation, come at a time when the threat has been recognized by the Obama administration’s call for a national multi-agency plan to combat drug-resistant tuberculosis.

It is an encouraging sign, Reichman notes in his piece, but, he also notes, it will be a meaningless one if the resulting plan is not sufficiently funded. Among the multitude of questions facing Congressional representatives as they negotiate the impacts of spending limits are whether health initiatives that include that one, geared towards saving dollars as well as lives in the long run, will receive the resources needed to be effective.

Reichman’s piece, which following the description of the current available treatments for the 3-year-old girl in Mumbai that still leave 80 percent odds she will die, cautions readers, “don’t assume this could never happen in the U.S.” He describes one similar case in Maryland, also of a 3-year-old child, albeit with better odds of successful treatment, before breaking down the numbers behind the costs of one case. While the U.S. has seen 18 cases of extensively drug resistant tuberculosis in the last seven years, he writes, it sees about 100 new cases of less extensively, but still multidrug-resistant tuberculosis every year, each leading to more than 1,000 exposures, several hundred infections over the following few years, and an immediate treatment cost of up to $400,000 each (and up to $1 million to treat extensively drug-resistant disease) along with impacts on families and communities.

The Nation piece shows both what happens when a country can bear those costs, describing the case of a man diagnosed in  Chicago and flown to the National Institutes of Health for $480,000 in treatment, and when a country can’t, because the numbers who need effective and appropriate treatment are just too great.

The correspondence in The Lancet focuses on the choices made — and questions them — when the options for treatment are limited and still being assessed, leading access to those drugs to become a question, in part, between protecting public health by protecting the patient or by protecting the drug. The letter tells of a patient whose disease was resistant to so many treatments that physicians called for combined treatment with both of the two most recently developed treatments for drug-resistant tuberculosis, bedaquiline and delamanid. The problem — delamanid is not registered in the United States, and while the drug maker Otsuka can provide the drug through its compassionate use program, it has a policy of not providing the drug to patients who have received bedaquiline in the previous six months. While this prompted by concerns about potential cardiac side effects from both drugs, the remaining options left the patient permanently disabled. An independent tuberculosis expert weighing the case concluded that future cases “although sporadic” are likely, and called for the consideration of the use of both drugs, as well as the prioritizing of research on the combined use of the drugs “because evidence in this field is desperately needed.”




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