DR-TB is a form of TB where the causative organism and hence the patient does not respond to the basic First line medication. DR-TB is one of the leading preventable causes of untold misery, great suffering, and back-breaking poverty & economic loss to those who are already living below poverty line.
Thus there are two forms of TB
• DS-TB or Drug Sensitive-TB
• DR-TB or Drug Resistance-TB
There are three known forms of DR-TB
• XXDR ( Labeled as the TDR by the Indian media)
DS-TB is a simple form of the disease which is fully curable by six month of medication known as First line drugs. It is easy to treat, mortality is only 5-10%, side effects of medication are minimal, and treatment can be delivered safely by semi-literate community health workers who have received little training. The WHO sponsored DOTS (Directly Observed Therapy Short course) program is a highly cost effective and efficacious program accepted worldwide and promoted by Governments for treatment of DS-TB. The diagnosis of simple DS-TB is by smear microscopy, a simple low cost technique which is easily available. Medicines for DS-TB are available in plenty.
How does drug resistance develop?
• Use of inadequate regimens and inappropriate Directly Observed Treatment (DOTS) leads to increase in drug resistance levels in the community. It has been acknowledged that good treatment for DS-TB is a pre-requisite to the prevention of emergence of resistance.
• RNTCP recognizes that implementation of a good quality DOTS programme is the first priority for TB control in the country. Prevention of emergence of MDR-TB in the community is more imperative rather than its treatment
• Most important: MDR-TB is a man-made phenomenon – poor treatment, poor drugs and poor adherence to therapy for DS-TB leads to the development of MDR-TB.
MDR is treated by Second line drugs. Incomplete and erratic treatment for MDR leads to worsening of resistance and XDR-TB. Incomplete treatment of XDR leads to XXDR, for which there is no treatment at all. These are people who are doomed to die a lingering, painful death.
All patients of DR-TB breathe out bacteria that are drug resistant. This is how DR-TB is spreading like wild fire. According to Lee Reichemann in his book the “Time Bomb”, the world is on the brink of an epidemic of MDR TB.
Treatment of DR-TB
For MDR-TB, the treatment is Second line drugs. Unfortunately, MDR-TB is typically undetected as we lack the capacity for the lab tests. Neither the tests nor the medicines are freely available. Very few patients of MDR are diagnosed and treated by the Government programs. Even when treatment is started, it is a daunting task, drugs are toxic, side effects are unacceptable, the treatment lasts for two years, and six months of daily injections are a norm. The mortality of MDR-TB is almost 80%, and the psychological impact of the disease combined with the social stigma against it leads to a horrifying scenario. The situation is worse for patients of XDR, who are forced to buy expensive medicines, some of which are not even easily available.
Challenges faced by patients of DR-TB:
• Discrimination by family, neighbours, landlords, employers, school authorities.
• Fear of spread of disease leads to widespread neglect of DR-TB patients. Thus they are shunned by family and receive very little food or care, and are often humiliated and abused by family members who often regard them as a burden.
• Daily injections are painful. Patients sometimes develop painful swellings at the injections site
• Injections cannot be given by community health workers. Patients have to pay a minimum Rs.10/- per day to a local nurse or health provider. These are patients who earn less than a dollar per day and are living below poverty line as defined by the World Bank.
• The side effects of second line drugs are manifold – patients suffer nausea, vomiting, acidity, electrolyte imbalance, thyroid disturbance, psychological problems such as depression and suicidal tendencies, and even liver and kidney problems.
• These patients have to make several visits to the public hospital for over two years, for repeated tests and consultation by the TB specialists. They are forced to incur huge expenses in transport.
• The social stigma of MDR is such that often patients lose jobs and livelihood. So there is very little food on the table. This is combined with expenses incurred to access treatment which makes matters worse.
• Patients of XDR have to buy expensive antibiotics on their own. Government of India does not provide free medication for these patients
Challenges faced by community health workers:
• It is challenging for them to retain patients in the system for two years and ensure compliance
• Patients are reluctant to take the medication, especially painful injections because of the side effects. Constant and repeated persuasion is required.
• Patients who miss their doses have to be tracked on a daily basis; there can be no delay in this. So very high quality work is required
• Counsellors spend a lot of extra time in patient education, in the field and on home visits. Convincing family members to treat the patient with kindness is a difficult proposition. Sometimes, many counselling sessions are needed to ensure this
• Counsellors find it difficult to convince patients to go to the public hospitals for tests. Sometimes patients say that they will not go unless someone pays the bus fair.
• Some patients need to be given food rations.
• It is difficult to ensure that families give tender loving care to DR-TB patients. There is an all pervading fear of contracting the disease.
• Counsellors who are treating DR-TB are constantly being told by their well-wishers to leave their jobs as they could contract a life threatening disease.
Challenges faced by NGOs
• There seems to be no extra funding for treating DR-TB, though the NGO costs go up substantially.
• Counsellors live in fear of contracting DR-TB. Though attrition rate has not increased, the time given by Senior Management to educate and convince counsellors has gone up substantially, thus adding to the costs.
• The training program needs an upgrade. In Operation ASHA, the training manual had to be upgraded and extra chapters added on drug resistance. First of all, the Training department had to upgrade its knowledge and skills in order to train the field workers. Comprehensive and regular retraining is required. All this leads to increased costs.
• Counsellors need to be given regular education on how to save themselves from getting DR-TB.
• NGOs are spending huge amounts of money on every case of DR-TB. Money is needed for injections, transport, and food for the patients. If a patient of DR-TB is the only breadwinner, money for food rations has to be given for the families. Rather than go all the way to the public hospital, sometimes patients insist that the NGO should pay for a test to be done conveniently by a nearby private lab.
• When costs go up, it is difficult to convince some of the existing donors to continue donating for the TB treatment program.
• ALL patients of Drug Resistant TB need some financial support, psychological assessment and nutrition supplements.
DR-TB is a frightening disease. It leads to horrifying human rights violations, disruption of families, and terrible economic loss to individuals, families, communities and countries. The amount of suffering these patients endure is unimaginable, their plight is pitiable.
My personal belief is this: those who are responsible for creation of DR-TB are no better than criminals; they have blood on their hands. I also believe that DR-TB is the new plague that had the potential to wipe out millions. It will cause great devastation to humanity and will have great adverse effect on the world economy.
Treating DR-TB is a challenging task, and there are challenges at every level. Fortunately, there are good people everywhere, and it is because of their vision that we can move forward. With their support, the fight goes on….
-Written by Dr. Shelly Batra, President, OpASHA