Updated: March 22, 2021 6:24:32 pm
Written by Anubha Taneja Mukherjee
Patient Organisations (POs) play a pivotal role in healthcare as their insights allow stakeholders such as regulators, payers and the industry make better decisions. The key to reshaping the healthcare industry is empowering POs so that they can advocate for themselves and other member patients to improve care across the country. Take thalassemia as an example. Many patients are successful doctors, lawyers, and genetic engineers. They have developed an understanding, competence, and capability to participate in decision making, so why should they not be included in policy making? Instead of considering them victims, there is a need to work with them in tandem to improve patient outcomes.
It is imperative to understand that not all decision makers will be experts in subjects related to thalassemia and it is critical to include patients as they are the ones who have suffered and learnt to live with the disease. Taking a cue from several other countries, India should have patient advocacy groups (PAG) who can help in establishing better patient services, saving millions of lives. When policy makers and key stakeholders work with patients, they identify the challenges and hardships faced by them. This can be replicated in India by involving thalassemia PAGs in propagation, implementation and formulating laws directly impacting them. RPWD Act 2016 and National Health Mission would be the apt examples and platforms for such engagement.
Thalassemia has been recognised as a disability under the RPWD Act. However, during the lockdown, thalassemia patients were not given importance as mandated by the Act. As per the data available on the National Blood Transfusion Council website, the blood donated in the country dropped from 38,189 units in February to 26,741 units in March of 2020. This was worrisome for thalassemia patients who require life-saving transfusions after every two weeks depending on their haemoglobin level. There were several reports from across the country stating that blood banks were facing a shortage of blood units due to lack of donors. During this difficult time, patient bodies like Thalassemia Patients Advocacy Group came forward to help the community while working with industry bodies, corporates and policy makers at the same time. From propagation of awareness around voluntary blood donation through digital platforms and traditional media, to engaging with MoHFW and NBTC, TPAG established itself as a partner more than a beneficiary.
While the above is an example of partnership in terms of propagation of guidelines of NBTC with regard to voluntary blood donation, TPAG’s efforts at safe blood transfusion services present an example of how patient bodies can and must be involved in policy amendment/ formulation as well.
Currently, the Drugs and Cosmetics Act regulates the functioning of blood banks and the National Blood Transfusion Council (NBTC) guidelines are voluntary. The NHM is responsible for thalassemia and National AIDS Control Organisation (NACO) has blood transfusion services under its ambit. The status quo demands India to consider having a consolidated blood regulation which is separate from the Drugs and Cosmetics Act and does not give adequate power to the NBTC in the future. There is also an urgent need to harmonise and mandate screening methodologies across India to prevent mortality by transfusion-transmitted infections like HIV, HCV, etc. Being the direct recipient of blood every fortnight, thalassemia patients have identified the lack of uniform screening methodology as a critical issue and have approached the government to look at this aspect and broader aspects of blood transfusion services. And, patients must be involved in rejigging the regulations regarding blood transfusion services in India.
More and more patients are now coming forward and demanding that their voices be heard, and they should be included in research, coverage, approval, and access. In the long run, keeping a patient-centric approach will help in improving healthcare in India. Doctors are constantly looking for tools that allow them to provide personalised treatment to their patients. Forcing a one-size-fits-all approach will put patients at risk and undermine the value of shared decision making. Therefore, a patient’s input is crucial at every level of care, from the clinician’s room to the policy making decisions. Organisations that represent patients know that the key to improving care is making the voice of patients heard. India has made significant strides in delivering care for thalassemics and is in the midst of a revolution in healthcare. The only way forward now should be to push patients in becoming advocates for their own health.
The writer is Member Secretary, Thalassemia Patients Advocacy Group