Patna High Court: The Division Bench of Sanjay Karol, CJ. and P.B. Bajanthri, J., took up a petition which following issues were into consideration:

  1. Is not the State under an obligation to make available all facilities, including blood, to patients who have the disability of Thalassemia?
  2. Is the refusal of blood on account of unavailability to patients suffering from Thalassemia a ground available to the State?
  3. Is the State obligated to pay compensation to the families of the patients suffering from Thalassemia who died due to the non availability of adequate medical facilities?

Petitioners herein were individuals directly or indirectly affected by Thalassemia, and they were all committed to working to better the people suffering from this disease. The petitioners have cited seven real-life instances from where an apparent lack of proper medication and blood has resulted in five fatalities. One common contention of all was the lack of medical resources and other essential equipment for treating Thalassemia patients. Some patients and their relatives have further contended that blood is being sold on the black market. The petitioners contend that each of these instances brings forth a chilling realization for the need to introspect. One issue that all patients face is the non availability of filters in hospitals which is considered indispensable during the treatment of Thalassemia. In addition to the lack of filters in hospitals, there is also a dearth of medicines that are neither available in hospitals nor in medical stores and can only be acquired through Thalassemia Societies.

As per reported statistics, 25% of all cases reported in India are from Bihar and Uttar Pradesh. As per the March of Dimes Global Report on Birth Defects, India has a prevalence of pathological hemoglobinopathies of 1.2 per 1000 live births.

Further, treatment of Thalassemia was part of India 12th Five Year Plan (2012-17) and, in light of its incurable nature, was recognized as a disability under the Right of Persons with Disabilities Act, 2016.

The Government, through the counter affidavit filed by Respondent, highlighted the action taken and further action proposed to be taken. Some of the initiatives which the Government has taken are as follows:-

  • Carrying out awareness, education and screening programmes in the community and schools
  • 2. Establishing labs to carry on screening for hemoglobinopathies.
  • Screening Pregnant Women and their husbands to prevent the birth of children with Thalassemia.
  • Establishing prenatal diagnostic centres in medical colleges.

The Court discussed the International obligations as per the UDHR, International Covenant on Economic Social and Cultural Rights, (1966), UN Convention on Rights of Persons with Disability, World Health Organization Constitution (1946) and reiterated numerous case laws decided by the Supreme Court of India one of them being Vikash Kumar v. Union Public Service Commission, (2021) 5 SCC 370 wherein Dr. Justice D.Y Chandrachud, elaborating upon the concept of “reasonable accommodation” and the Rights of Persons with Disabilities Act, 2016, had stated: “Intrinsic to its realization is recognizing the worth of every person as an equal member of society. Respect for the dignity of others and fostering conditions in which every individual can evolve according to their capacities are key elements of a legal order which protects respects and facilitates individual autonomy… The law does this by imposing a positive obligation on the State to secure the realization of rights. It does so by mandating that the State must create conditions in which the barriers posed by disability can be overcome. The creation of an appropriate environment in which the disabled can pursue the full range of entitlements which are encompassed within human liberty is enforceable at law.”

The Court further elaborating upon the Right to Health under the Constitution discussed the cases of Consumer Education & Research Centre v. Union of India, (1995) 3 SCC 42 and National Legal Services Authority v. Union of India, (2014) 5 SCC 438. The Court finally was constrained to direct the formation of an independent committee of doctors to take a survey of all the facilities present in the State, examine their readiness, availability, accessibility and quality, and submit a report on the same to the Chief Secretary, Government of Bihar within four months for taking appropriate action at all levels. Further directions were issued to the State:

  1. A committee comprising (i) Dr Chandra Mohan Kumar, Additional Professor, Paediatrics, AIIMS, Patna, (ii) Dr Ravikirti, Additional Professor, General Medicine, AIIMS, Patna, (iii) Dr Avinash Kumar Singh, Consultant Haematologist, Paras HMRI, Patna, (iv) Dr Bankim Das, Assistant Professor in Transfusion Medicine, AIIMS, Patna,, is constituted with a twofold mandate- (a) They shall inspect all the Institutions offering treatment to patients suffering from Thalassemia for examining their readiness, availability, accessibility and quality. (b) They shall also suggest suitable compensation for the five above named juvenile fatalities as reported by the petitioners. The report so prepared within four months to be submitted to Chief Secretary, Government of Bihar.
  2. The State is to extend all necessary help to this independent committee in the formation of this comprehensive report.
  3. The Chief Secretary, Government of Bihar, upon receipt of such report to take action. He will also take appropriate action concerning the compensation recommended by the Committee formed.
  4. The State must take all possible efforts to ensure that health-related needs, most importantly, as well as others, are met for those suffering from Thalassemia, and for vulnerable groups as a whole.
  5. For the two cases, namely Shubham (aged seven years) and Md. Talha Tanveer (aged three years) highlighted by petitioners, the Government is to appoint an officer to verify the details and provide all the assistance permissible under the law to ensure that the number of fatalities is not increased beyond what has already occurred.
  6. Government to explore the possibilities of appointing a nodal officer per district who shall be responsible for ensuring that needs of people belonging to vulnerable groups have their needs met, and take appropriate steps in that regard.
  7. Blood banks should be set up at the earliest in the two districts, i.e. Sheohar and Supaul, in which they are absent, and constructive steps should be taken to ensure the proper availability of blood throughout the State.
  8. The State to ensure that the second child of Shri Vijendra Yadav, as mentioned in paragraph 14(a) of the petition, is given proper care entitled to as per the authorities mentioned above in this order.
  9. Liberty reserved to the petitioners to move an application afresh if the need so arises subsequently.

[Amit Kumar Agarwal v. Union of India, 2021 SCC OnLine Pat 2777, decided on 01-11-2021]

Suchita Shukla, Editorial Assistant has reported this brief.

For the Petitioner/s:    Mr Vishal Kumar Singh, Advocate

Mr Deepak Kumar Singh, Advocate

Mr Akash Keshav, Advocate

Ms Akanksha Malviya, Advocate

For the Respondent/s: Dr K. N. Singh (ASG)

Mr Kumar Priya Ranjan, CGC

Mr S.D. Yadav, AAG-9

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