10 Nov 2023 10:11 AM GMT
On October 12, 2023, the Jharkhand High Court after hearing a Public Interest Litigation (PIL) for the cause of thalassemia patients asked the state government to outline the facilities that are available in the state of Jharkhand regarding treatment and blood transfusion to patients suffering from thalassemia. Sickle cell anaemia and thalasmmeia has a reasonable prevalence rate of eight...
On October 12, 2023, the Jharkhand High Court after hearing a Public Interest Litigation (PIL) for the cause of thalassemia patients asked the state government to outline the facilities that are available in the state of Jharkhand regarding treatment and blood transfusion to patients suffering from thalassemia. Sickle cell anaemia and thalasmmeia has a reasonable prevalence rate of eight to ten percent in Jharkhand. This is double the national average. No wonder the state is considered to be an endemic zone for these diseases. It is a matter of huge concern that the state does not have a single hematologist or the appropriate infrastructure to provide specialized care to patients of these blood related disorders. Given this situation, the patients are left with only two options. They may choose to get mere mediocre assistance or are compelled to go to other states with better medical infrastructure in order to obtain proper treatment.
The public interest litigation delineating the situation was filed on some really genuine grounds which require urgent attention and immediate action. It was stated that it is an alarming situation that the state lacks even a single hematologist, a specialist doctor in blood related issues, in order to guide and treat thalassmeia patients. This is in a country where the right to health is a part of Article 21 of the Constitution of India. The malady is largely prevalent among the Scheduled Tribe population of the state which according to Census 2011, constitute around 26.2 percent of its total population. The tribes are vulnerable to many hereditary disorders including thalassemia. These genetic disorders adversely affect the general health of an individual. Concerted efforts are therefore required to identify their health issues.
It is disheartening to find that there is no lab testing facility for the lack of manpower and is in clear violation of the drafted policy for prevention and control of haemoglobinopathies. Patients suffering from thalassmeia have to undergo huge financial expenses together with the need to travel to neighboring towns only adding to the existing misery. The cost of maintaining health of such patients is quite high and the state’s apathy towards the problem have led the sufferers to lead a stunted and unhealthy life. Sonal Tiwari, advocate for petitioners’ in the state said that the National Health Mission Guidelines for Prevention and Control of Haemoglobinopathies in India clearly provides for financial assistance for obtaining medicines together with establishment of day care facility for blood transfusion at the district hospitals.
Around four years back, in August 2019, Nitin Madan Kulkarni, the health secretary of the state confirmed that Jharkhand does not have any hematologist. This, he attributed, to the lack of seats in courses of haemioglobinopathy. He told that the requirement is often looked after by specialists from various departments. He also said that a proposal has been made to set up a haemoglobinopathy department at the state run super specialty hospital i.e. Rajendra Instititute of Medical Sciences (RIMS). It was also found that there are more than 50,000 recorded patients of thalassemia and sickle cell anemia across Jharkhand.
It is to be noted here that according to the guidelines issued by the Ministry of Health and Family Welfare no cost should be charged for the issue of blood or blood components to patients of thalasmmeia who require repeated blood transfusion. The patients are often forced to pay extra money for the fact that the state doesn’t provide adequate relief and facilities to them. Apart from it, the National Blood Transfusion Council, Ministry of Health and Family Welfare, had directed the professionals engaged in blood transfusion services to facilitate maintenance of adequate stocks of safe blood to meet the requirements.
Jharkhand lacks any institutional mechanism to formulate policies and keep a check upon the prevention of the disease as has been mandated in the National Health Mission Guidelines for Prevention and Control of Hameoglobinopathies in India. The guidelines propose to create laboratory facilities for testing and confirmation of haemoglobinopathy carrier at district levels but the state government lacks any such lab facility.
The severity of disease has led to its inclusion as a form of disability under the Rights of Persons with Disabilities Act, 2016. Section25 (1) (b) & (a) of the Act directs the appropriate government to ensure barrier free access to them in all health institutions whether public or private and for providing free healthcare in the facility. Despite this, the patients are forced to pay exorbitantly high prices for the medical treatment. The provision under Section25 (2) (a) of the Act envisage to undertake surveys, investigate and research regarding the cause of such disability. The state lacks having undertaken any such surveys. Also the Act directs the state and the local governments to make schemes and promote healthcare during the time of natural disasters and other situations of risk. However, the state government record reveals that it could not stand the test of this legal provision during Covid ‘19 pandemic.
The situation reveals that the state has failed to perform its duty as per Article 47 of the Indian constitution which states that the primary duty of the state is improvement of public health, extension of benefits pertaining to sickness, disability, old age and maternity. Article 41 of the Indian constitution provides for public assistance by the state in special circumstances such as sickness, disability, old age, etc. Letting the patients visit private hospitals by paying unreasonable amounts depicts that the respondents are reluctant to provide any kind of assistance.
Right to Health – A Fundamental Right
Through various judicial pronouncements, the Supreme Court of India has interpreted Article 21 liberally to extend its scope so as to include the right to health as a fundamental right under Part III of the constitution. In Bandhua Mukti Morcha v.Union of India, the Apex Court, inter alia, interpreted the dignity and health within the ambit of life and liberty under Article 21 of the constitution of India which must be appreciated. In Paschim Banga Khet Mazdoor Samiti, the scope of Article 21 was further widened whereinthe honourable Supreme Court held that it is the responsibility of the government to provide adequate medical aid to every person and also to work for the welfare of the general public. Moreover, it imposed an obligation on the state to protect and safeguard the rights of every person. Is this being done in the case of thalasmmeia patients of the state?
The thalassmeia patients have consistently made efforts to contact the concerned authority ranging from civil surgeon to even the health ministry of the state government but have not received any sort of assistance from the concerned ministry. Above all, what about the violation of the World Health Organization’s (WHO) resolution which considers health as a basic fundamental right which must be appreciated.
Fine tuning health infrastructure – An appropriate remedy for Thalassmeia sufferers
Thalassmeia sufferers across Jharkhand expect a sincere endeavor from the state government. This can be in the form of the state government keeping an updated and user-friendly database which can enable one to check the availability of blood transfusion facilities in localities for thalassmeia patients. A proper lab facility must also be created in order to ensure that no laxity takes place in managing the public blood transfusion centers so as to enable the patients an easy and affordable access. There lies an urgent need for a board to be constituted which shall look after the research and developmental aspect of haemoglobinopathy and ensure proper infrastructure for its flourishment which can also cater to the needs of thalasmmeia patients in the state. Above all, a compliance report needs to be filed before the honorable Jharkhand High Court.
The author is an Assistant Professor of Law at the Institute of Legal Studies, Ranchi University. Views are personal.