A new legislation is on the anvil to declare tuberculosis (TB) as a notifiable disease in Pakistan. When passed, the “Tuberculosis Notification Act, 2012” would make it mandatory on all registered medical and traditional practitioners, registered hakims, healthcare providers, pathological laboratories, educational institutions, industrial concerns, mines, jails, madrasas, refugee camps, councilors, tribal heads, maliks, lumbardars, appointed and hereditary community representatives to notify District EDO Health of a confirmed or suspected TB case in accordance with the set procedures.
Notification would be done either by sending TB Notification Form by registered post to the EDO Health, completing the appropriate TB Notification form on-line a website, or by telephoning on a universal access number. Failure to notify and breach of confidentiality of the TB patient would amount to a cognizable offence and be liable to penalty.
Such a policy has far reaching consequences for the health of almost every citizen and raises many questions. What does it mean for a disease to be notifiable? What ethical, programmatic and sociological aspects must be considered for its success? How would it affect the disease control programs on the ground?
It is not in scope of this space to answer these questions at length but I would like to underlines here that these, and indeed many other arising questions, need to be fully explored and discussed within the health, patients, communities and development circles. There clearly are rights issues involved in this debate and people involved in rights campaigns need to pay attention and get involved.
TB is a notifiable disease in most developed countries including Australia, Hong Kong, Malaysia, United Kingdom and United States. Recently, India has also declared it a notifiable disease. Some examples of other notifiable diseases in these and indeed in many other developed countries are cholera, leprosy, diphtheria, plague, tetnus, typhoid and yellow fever.
According to estimates some 420,000 new cases of TB occur in Pakistan every year, of which 15,000 are suffering from multi-drug resistant TB (MDR TB). However, only about 50% of the TB patients affected by the bacteria susceptible to be killed with the first line anti-TB drugs and a fraction of the MDR TB, which is much more expensive and difficult to treat disease, avail the free TB services at the government run TB facilities.
Making TB a notifiable disease would make it mandatory for the government to ensure equal and fair distribution of resources to treat all the patients for free whether reporting at the public or private health care services. This would mean that already dwindling resource allocation for TB treatment in the country just not be enough and the question of where the additional resources going to come makes this a tricky preposition.
Success of the new policy would depend largely on whether the required sensitive approach towards stakeholders, especially the patients, their families, and the communities where they live. The policy formulation and implementation needs to done in a way which ensures that a negative public health or social justice outcome is allowed to negate the gains to be made by the new policy as well as protect those made by TB control in the past years. One particular area to watch out for is that the mandatory notification may heighten the existing stigma and discrimination faced by TB patients. This will drive patients away making them to seek care much later or even disappear altogether from the radar.
I am highlighting this last point particularly so after having reviewed the recent Indian experience. The policy mandating TB notification in India was formulated without any dialogue with the stakeholders to ensure that the policy guarantees medical confidentiality of TB patients, provides for the necessary psychosocial support and access to the most appropriate treatment as per WHO guidelines. It is quite clear that there is need for an open and inclusive discussion and debate in Pakistan with all the stakeholders, including patients suffering from TB and its different forms, regarding the different aspects, benefits versus harms of the policy of compulsory notification of TB cases to the TB authorities.
As Shobha Shukla, and Bobby Ramakant of Citizen News Service very comprehensively put it: “Genuinely engaging affected communities in TB programs as equal partners with dignity, ensuring quality counseling in TB programs, improving treatment and health literacy, addressing TB related stigma and discrimination that still is rampant in our society, thinking beyond DOTS when it comes to treatment provision, integrating TB programs with other development programs such as those on nutrition, sanitation, harm reduction, HIV, diabetes, among others, monitoring irrational use of drugs, strengthening health systems, and many such measures will yield more sustainable and positive public health and social justice outcomes”.
Watch video blog in Urdu on 'Making TB a notifiable disease '
Ayyaz Kiani is a public health specialist. He heads Devnet – a network of development consultants. Based in Islamabad, he has travelled around the world and continues to do so to meet fellow travelers. He can be reached at firstname.lastname@example.org.
The views expressed by this blogger and in the following reader comments do not necessarily reflect the views and policies of the Dawn Media Group.