Executive director and secretary to the board, TB ACTION Group
Edward Kahi Mwangi is a young Kenyan man, husband and father who began experiencing classic tuberculosis symptoms of night sweating, coughing & lost voice, and fatigue about a year ago. While his wife and child were cleared, Edward tested positive for a particularly bad strain of TB known as multi-drug resistant TB (MDR-TB). Because of community outreach run by my TB ACTION Group, we met Edward who had been initiated on treatment and faced stigma and discrimination.
While MDR-TB is entirely man-made through inconsistent or incorrect treatment, it is also airborne and infectious meaning that anyone can catch MDR-TB. Edward is lucky to have been diagnosed in time; the most common methods for testing drug resistance can take between six and 16 weeks. Luck shouldn't have anything to do with it: Many patients lose their lives before it is even known that they have drug-resistant TB.
It is estimated that there were just over 300,000 MDR-TB cases among known patients with TB in the lungs -- and that almost 10 percent of those cases are extremely drug-resistant forms of TB (XDR-TB) making it exceedingly difficult to treat and cure.
The proportion of TB patients estimated to have MDR-TB that were actually diagnosed was under 20 percent in all of the high MDR-TB countries meaning that few people are getting the treatment they need to be cured and are potentially infecting others with this more difficult to treat kind of TB.
Proportionally, more MDR-TB patients die than the overall results for TB patients.
Drug-resistant TB should be a rallying point for the need for new diagnostic tools, new drugs and other treatments; there have been no new TB drugs created for over 40 years, no life-long vaccine against TB exists and the most common diagnostic method used around the world is over 100 years old and cannot diagnose drug-resistant TB.
As Lucica Ditiu, Executive Secretary of the Stop TB Partnership said a few weeks ago when we discussed Edward's story here on the blog:
Edward does seem to have been lucky -- the World Health Organizations' recent TB control report showed that less than 4 percent of new cases are even being tested for MDR-TB -- which is both more difficult and more expensive to treat. We estimate there were 440,000 new cases of MDR-TB in 2011; we only found 56,000 of them and enrolled them in treatment.
This is a huge number of people who should have been provided with TB care and were not. I've said it before but governments need to recognize MDR-TB and scale up their responses -- unlike the treatment for drug-sensitive TB, multi-drug-resistant TB drugs can cost as much as $3,800. MDR-TB is also airborne, and with 5 percent of all people affected by this dangerous form of the disease, we simply cannot afford to ignore the need to scale up our response to MDR-TB or it will simply become more expensive and more difficult to fight TB.
Progress is being made however. There is a new diagnostic tool that can diagnose TB and the most common forms of drug resistant TB within two hours at point of care. This particular technology, the Xpert MTB/RIF machine is expensive and tests were close to $17/test. However, in August, significant progress was made when a 41 percent price reduction, bringing the cost to just under $10 per test, was implemented.
With progress come challenges. As the Global Fund notes in the landscaping done for its strategy for 2014-16, new diagnostics will increase the number of complex cases detected meaning there will be increased demand for complex treatments.
Ultimately Edward is a powerful story of hope; thanks to the Global Fund, Edward was able to quickly access the otherwise prohibitively expensive treatment he needed and his wife and child have thus far not been infected. Innovative and sustained funding is critical to ensure the scale-up that is needed to effectively address and eliminate TB; fully-funding the Global Fund in 2013 is one of the ways we can sustain and build upon the progress we have made. We can be at the beginning of the end of TB.
About the Here I Am campaign: The Here I Am campaign is a global call on world leaders to save millions of lives by supporting a fully funded Global Fund to Fight AIDS, Tuberculosis and Malaria. Here I Am brings the voices of people that are directly affected by AIDS, TB and malaria into dialogue about decisions that affect their lives and the lives of millions of others in their countries. Through video testimonies from all over the world, campaign ambassador advocacy, online actions and on-the-ground mobilizations, the Here I Am campaign is building collective power to end three of the world's most deadly diseases. http://www.hereiamcampaign.org
After service in the British SAS Regiment the author became a physician and then an orthopaedic surgeon.
He has held professorial positions in Canada, Vietnam and the United States, practiced and taught orthopaedic surgery in three continents and in several wars.
He has extensive experience as an expert witness in court. Somewhere along the way, time was found to operate a four hundred acre mixed farm, a one hundred seat restaurant and to obtain a licence as a flying instructor.
The author's books are available from bookstores, the publishers, or from on-line bookstores such as Amazon, Barnes and Noble, and Indigo/Chapters.