(Written by Anubha Taneja-Mukherjee)
Decision making is an inherently complicated procedure, which by its very nature requires the decision-maker to co-opt all the stakeholders concerned. The procedure may vary from country to country, depending on its size, culture, history and special demographic circumstances. Around the world, key decision-makers include the executive, the legislature and the judiciary. While the distribution of powers between these three may vary according to their relation to each other, their roles remain the same. While the legislature enacts laws for its citizens, the executive, implements these laws and while doing so promulgates policies that are in alignment with the said laws. Mostly, the executive is also authorised to promulgate some laws of its own. The judiciary comes into the picture when there is a dispute with regard to such laws. It also steps in on its own at times. While settling such disputes, the judiciary also ends up setting what we know as precedents, which also become a part of the legal fabric of society. In a nutshell, these three are the key decision makers in any country.
As mentioned above, while making decisions, these authorities are mostly required to co-opt all the stakeholders concerned, thereby making decision making a consultative process. These stakeholders include think tanks, research bodies, media and most importantly the affected party. The reason for having such a consultative procedure in place is that the decision makers are not experts on every issue that comes their way. For instance, when a need to promulgate a national policy on thalassemia presents itself to a certain government, whether it be owing to media reportage or representations from the civil society, the decision makers will look towards people considered to be the experts in the subject to be a part of the policymaking. As far as the participation of patients in policymaking on healthcare is concerned, while it does sound obvious that those impacted with a particular disorder would be the ones with the first-hand knowledge about the disorder and therefore the natural choice of policymakers as far as participation in decision-making is concerned, substantial distance remains to be covered in the area. And, the journey needs to be undertaken by both the patients’ community as well as the policymakers. The case of Thalassemia Patients Advocacy Group (TPAG) well illustrates the point.
Thalassemia is an inherited blood disorder that causes the body to have less haemoglobin than normal. Such patients need blood on a regular basis for the whole of their lives. Management is the cure, in most cases. India has close to two million such patients. I am one of them. Our struggles range from blood shortage to associated hepatic, endocrinological and cardiac issues. Disparity of management — lack of one standard of care across India – is the biggest challenge though. We, the members of Thalassemia Patients Advocacy Group (TPAG), decided to address these challenges and started moving from the beneficiary mode to partnership mode when seven of us trained in areas like law, medicine, IT, etc decided to form TPAG under the aegis of our parent organisation Thalassemics India on September 16, 2017. Our Mission is to protect the overall interests of thalassemics in India and prevent thalassemia. We are delighted to have completed three years and were supported by many along the way, including the Government itself. “Unite, Engage and Partner” has been our Mantra and partnership has been the wind beneath our wings. We have never looked at ourselves or patients as activists of beneficiaries but as affected professionals who understand conditions like thalassemia and are eager to align our goals with the Government’s goals like “Healthcare for All”.
From prevention of thalassemia to its management across India, we have worked on studying the relevant laws, pushing for their speedy implementation and calling out areas where laws are required. In this journey, we have had the opportunity to work with corporates and think tanks alike. It is heartening to note that the Hon’ble Health Minister not only related to our problem but has taken steps like launching the thalassemia screening centre at the Indian Red Cross Society HQ at Delhi. The Rights of Persons with Disabilities Act 2016 is another progressive law that, if implemented as per the intention of the legislature, will prove to be a gamechanger in preventing and managing disabilities like thalassemia.
While India, like any other country, is facing the challenge of COVID-19, it is not only the right of patient bodies but also their duty to draw the attention of policymakers and other stakeholders to the peculiar needs of patients across conditions. For obvious reasons, the role of preventive diagnostics has never been understood and appreciated like it is during COVID times. When one struggles for safe blood and other facilities during these times, it becomes clear how much better it would have been to prevent the disease and lessen the burden on the country’s economy. India can do without tags like “thalassemia capital of the world” and patient bodies have a huge responsibility to ensure that they participate in decisions related to prevention and management of diseases so the country saves resources for developmental activities. At the same time, it is high time that patient bodies were given their due place in policymaking and not considered only as victims. As TPAG turns three, I can only hope and pray that more patients and patients and patient bodies come forward to understand that there can be #NothingAboutUsWithoutUs.
The writer, a lawyer by training, is a policy advocacy professional and Member Secretary, Thalassemia Patients Advocacy Group. Views are personal