Community demands shorter and safer treatment for drug-resistant TB

Nenet L Ortega, CNS Special Correspondent
Photo credit: CNS: citizen-news.org
According to WHO's Global Tuberculosis Report 2014, an estimated 480,000 people developed multidrug-resistant TB (MDR-TB) worldwide in 2013 and an estimated 210,000 died from it. However only 136,000 were diagnosed and only 97,000 patients (one out of five) could be started on MDR-TB treatment in 2013, with the gap between diagnosis and treatment widening between 2012 and 2013 in several countries. On an average, an estimated 9% of people with MDR-TB had extensively drug resistant TB (XDR-TB).

As we all know, MDR-TB is a type of TB that is resistant to at least two drugs--isoniazid and rifampicin which are the two most potent and powerful first line treatment drugs for drug sensitive TB. XDR-TB is  resistant to isoniazid, rifampicin and any fluroquinolone, and at least one of the three injectable second line drugs like amikacin, kanamycin and capreomycin.

In most of the cases, X/MDR-TB patients are usually left with limited  treatment options that are very expensive and pose too many clinical side effects that are devastating for the patient.

There were heart rending stories shared by the MDR-TB community at the 45th Union World Conference on Lung Health recently held in Barcelona. Safir Nauro, an MDR-TB survivor from Tajikistan insisted upon the rights of patients to access quality health services—the reason for his surviving MDR-TB. He shared that MDR-TB took the lives of two of his brothers who were never able to get the chance to access MDR-TB drugs to keep them alive. As for himself, he was lucky to be able to take the pills that would kill the bacteria in his lungs. But the side effects of the drugs were also killing him emotionally, psychologically and physically. Miserable as he was, he had no other option but to hold on to the drugs to keep up and maintain life. He eventually survived the ordeal and is now declared treated and is a survivor of MDR-TB.

His advocacy now is to make available and accessible short term MDR-TB and XDR-TB regimens and treatment. He wants to see a more patient friendly regimen that is less toxic and with less side effects which will cure the lieks of Safir in a shorter period than of time.

Kedibone Mdolo of South Africa was also diagnosed with MDR-TB. A nurse by profession, and used to giving tender loving care to every patient under her care, she was jolted to find herself at the receiving end of care. She was confined in a private hospital during her treatment. A double whammy was killing her- too many a number of pills daily for her long term treatment, and on top of that the stigma and discrimination she experienced at the hands of the nurses in that private hospital where she was confined. After long months of treatment, and with her brave and strong will to live for her family, Kedibone was cured. She was indeed lucky to have been declared treated as the global cure rate for MDR-TB is a dismal 48%. She is now back to work as a community nurse, this time doing a lot of advocacy for making available short term treatment MDR-TB drugs.

In South Africa, Dalene Van Delft, a young  promising pediatrician was diagnosed with MDR-TB. She was enrolled in a drug regimen that required her to take 30 pills every a day for the next 24 months. She was isolated from the rest of her social contacts and family so as to not transmit the infection to others. A few months later, Thato Mosidi,  another young promising pediatrician working in the same hospital was also diagnosed with MDR-TB. She was prescribed the same set of drugs to treat her. In the fourth month of her treatment, Dalene Van Delft stopped taking her drugs. It was a choice between becoming ‘deaf or dead’. She did not want to become deaf for the rest of her life. She uttered, “how can I be a doctor without a stethoscope?”

According to Van Delft, there are many more MDR-TB patients in South Africa who are in need of drugs that have less side effects. Together with Mosidi and the rest of the patients, she continues to lobby for new drugs like bedaquiline that has been approved by the FDA.  Van Delft, Mosidi and a few other MDR-TB patients in South Africa are now being administered bedaquiline on compassionate grounds.

But many more people need to live and survive MDR-TB free by getting shorter, safer effective TB drugs. Simpler, shorter TB treatment could foster healthier markets, better enabling appropriate TB medicines to be provided to people who urgently need them.

Since early reports from Bangladesh of a shorter, more tolerable and successful treatment regimen for MDR-TB (that reported a cure rate of 82.5%), there has been great interest in the development and future direction of this revolutionary treatment approach. These are regimens for MDR-TB patients that typically last 9-12 months and are less costly than the current standard 20-24 months treatment regimen and are also likely to be better tolerated by patients. Preliminary data from similar studies done in Niger, Benin, Cameroon, Central African Republic, Côte d’Ivoire, Democratic Republic of Congo, and Swaziland also shows positive results. However the major concerns are that patients, who do well after 9–12 months of treatment, may have a higher risk of acquiring resistance in while on treatment and subsequently relapsing with TB. So researchers will continue to monitor treatment outcomes until 24 months after treatment.

Two new drugs
Bedaquiline and delamanid, (the two other wonder drugs for treating MDR-TB), have been approved by FDA and EMA respectively, on the basis of phase 2b data only and phase 3 study for both these drugs is in the initial stages. While WHO has recommended Bedaquiline for use in MDR-TB patients with no other treatment options, it is still in the process of developing recommendations for Delamanid. Moreover, as of now these drugs are prohibitively expensive and remain largely out of reach for patients in high MDR-TB burden countries.

So while new treatments do provide new hope, what is urgently needed are regimens that are patient friendly, quality assured, safe and efficacious, along with more tools for timely and accurate diagnosis. Also more evidence is needed to inform effective use of new and existing medicines.

A common chant of the MDR-TB community during the Conference in Barcelona was that people are in need of shorter, safer and effective drug regimen as the current treatment regimen of MDR-TB is slowly eating them up psychologically, physically and emotionally. They insisted that, “we need to be treated humanely by making better treatment regimens available to all those in need in the poor and developing countries.”

Nenet L Ortega, Citizen News Service - CNS
2 November 2014
(The author is reporting for Citizen News Service (CNS) from the 45th Union World Conference on Lung Health in Barcelona, Spain, with support from the Lilly MDR TB Partnership. Email: nenet@citizen-news.org)

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