At the Union Conference on Tuberculosis and Lung Disease held in the Hague recently, a well-known European research clinician proclaimed: “Countries [with weak health systems] should not let bedaquiline out of the box”.
Bedaquiline is one of only two new anti-tuberculosis (TB) drugs to have been developed in the last half century, and has been shown to dramatically increase a person’s chances of successful treatment for drug-resistant – or “superbug” – types of TB.
In saying that bedaquiline should be kept in the box, the doctor was suggesting that with limited anti-TB drugs in development, new drugs like bedaquiline should be “protected” – read “used sparingly” – so as to prevent the TB bacteria from developing resistance.
Just moments before, another scientist had described the standard treatment given to people with drug-resistant TB in Niger as “very tolerable”, despite the fact that this treatment contained a complement of archaic drugs, one of which – an antibiotic given through a painful daily injection – had resulted in nearly 30% hearing loss among the study patients!
The people in the room mostly seemed to be humming along with the statements, and I wondered how many of them had sat across from a patient who has suffered deafness as a result of our current treatment for drug-resistant TB treatment.
‘Soundless, lifeless life’
Indian journalist Nandita Venkatesan – also at the conference – described life after becoming deaf from this injectable antibiotic as, “a soundless, lifeless life”, and my thoughts went to a patient I had consulted with a few months earlier. Ntombi (name changed) had broken into desperate pleading and begging when we discussed the treatment of her drug-resistant TB, saying, “Please don’t give me that injection. I have to hear, and I have to live.” She had lost her brother to extensively drug-resistant TB (XDR-TB) in a time when bedaquiline did not exist. Two other family members treated for drug-resistant TB – one just a child – had been left deaf as a result of treatment.
Experiences like these make me feel grateful that I treat TB in South Africa, a country that publically declared in June 2018 that bedaquiline would be offered to drug-resistant TB patients in place of the toxic antibiotic that can cause deafness. This bold announcement followedthe publication of some databy South Africa’s Department of Health, demonstrating that people who had received bedaquiline were four times less likely to die from drug-resistant TB.
South Africa is not the only country using new medicines to save lives. According to evidence presented at the 2018 Union conference, 88% of 244 people treated for drug-resistant TB in Belarus (the majority with the highly resistant XDR-TB) were successfully treated with a combination of drugs containing bedaquiline, as well as the other new and repurposed anti-tuberculosis drugs delamanid and linezolid. Compare this to the global cure rate for XDR-TB, which sits at approximately 25%.
Globally, around half a million people are diagnosed with drug-resistant tuberculosis every year, yet only around 5% have access to the new anti-tuberculosis drugs. A reduction in price from pharmaceutical giants Johnson & Johnson and Otsuko is urgently needed together with political will and demand from health care workers and communities affected by TB in order to upscale access to bedaquiline and delamanid.
I was shocked and saddened that the TB community was so divided at the Union Conference. While some doctors and activists called on the drug companies Johnson & Johnson and Otsuko to lower the price of bedaquiline and delamanid, to allow broader access to poor countries, other research clinicians were advising that these same drugs should be “held back” from these countries, and “saved for future generations”.
This way of thinking would appear to be in conflict with the International Covenant on Economic, Social and Cultural Rights, which outlines the fundamental right to the highest attainable standard of health, including, ‘the protection and control of epidemic diseases’. The legally binding covenant also outlines the rights of communities to enjoy the benefits of scientific progress in relationship to health.
The medical conservatism I encountered at the Hague-hosted conference made me realize that in spite of the progressive strategies of South Africa and Belarus, the gaps between the policies of governments, the priorities of pharmaceutical companies and the needs of people suffering from TB are still very wide, and it will be a long time before the internationally agreed upon endTB goals of “patient-centered care”, and “zero suffering for patients and families” is a reality.
How many more people will die or go deaf waiting to access the best new anti-TB drugs, while people in suits debate when and who is worthy of benefiting from scientific progress? My mind rests on a quote from Elizabeth Blackwell, the world’s first female doctor: “We [health care professionals] are not tinkers who merely patch and mend what is broken…. We must be the watchmen, guardians of the health and life of our generation.” We need to acknowledge that it is not our duty to protect ideas, or theories, but to fight for what is best for patients now, and to everyday make the choice to fight for life.
Dr Anja Reuter is a medical doctor working in the field of drug resistant tuberculosis in Khayelitsha, Cape Town.