Just because someone is poor, the State cannot allow him to die; Delhi HC in landmark Judgment orders Enzyme Replacement Therapy at AIIMS free of charge to a Minor aged 7 years; [Read Judgment]

In a landmark Judgment, Delhi High Court today directed Government of NCT of Delhi, to discharge its constitutional obligation and provide a minor boy aged 7 years who is suffering from a rare genetic disease called Gaucher Disease, with enzyme replacement therapy at AIIMS free of charge as and when he requires it.

Justice Manmohan, who delivered the Judgment held that "Just because someone is poor, the State cannot allow him to die. In fact, Government is bound to ensure that poor and vulnerable sections of society have access to treatment for rare and chronic diseases, like Gaucher especially when the prognosis is good and there is a likelihood of the patient leading a normal life.  After all, health is not a luxury and should not be the sole possession of a privileged few"

The  issue  that  arises  for  consideration  in  the  Case was whether a minor child born to parents belonging to economically weaker section of the society suffering from a chronic and rare disease, gaucher, is entitled to free medical treatment costing about rupees six lakhs per month especially when the treatment is known, prognosis is good and there is every likelihood of petitioner leading a normal life.

A young boy aged 7 years suffers from a rare genetic disease called Gaucher Disease, which is Lysosomal Storage Disorder, wherein the body cannot process fat resulting in accumulation of fat around vital organs of the body.    If this disease is left untreated, the petitioner is unlikely to survive.  Petitioner is the fourth and only surviving child of his parents; his other three siblings have already succumbed to the same disease. A  treatment  by  the  name  of  Enzyme  Replacement  Therapy  is available for this disease.  It is expected that patients receiving this treatment have  a  high  degree  of  normalcy. The  treatment,  however,  is  monthly, lifelong and exorbitant. Petitioner's father, who is a rickshaw puller by profession cannot afford the same. Hence he approached the Court.

Asserting Right to health is a fundamental right flowing from Article 21 of the Constitution of India, the Court held that "In the opinion of this Court, Article 21 of the Constitution clearly imposes a duty on the Government to take whatever steps are necessary to ensure that everyone has access to health facilities, goods and services so that they can enjoy, as soon as possible, the highest attainable standard of physical and mental health.  By virtue of Article 21 of the Constitution, the State is under a legal obligation to ensure access to life saving drugs to patients. A reasonable and equitable access to life saving medicines is critical to promoting and protecting the right to health. This means that Government must at the bare minimum ensure that individuals have access to essential medicines even for rare diseases like enzyme replacement for Gaucher disease. Availability of a very expensive drug virtually makes it inaccessible."

The Court also opined that Government needs to seriously consider expanding its health budget if their right to life and right to equality as enumerated in Articles 14 and 21, are not to be rendered illusionary.  If poor patients are to enjoy benefit of recent innovations in the medical field, like robotic  surgery,  genome  engineering  the  Government  must  immediately think of increasing its investment in the health sector.

The Court issued the following suggestions relating to the issue

i. All  government  hospitals  could  have  a  separate  CSR/  Charitable entity/account  wherein  donations  can  be received. The donations could be subject to an audit.

ii. Each hospital could have a designated officer, to whom applications for assistance can be made by patients in need. The decision to whom financial assistance could be provided, be left to the Medical Superintendent/CEO of  the hospital along with Head of the Departments. Delhi could be adopted as the first model state.

iii. The  Ministries  of  Corporate  Affairs  and  Finance  could  consider providing extra credit (for instance increased credit) for donations in certain sectors, such as health.

iv. The Government could adopt a holistic approach to facilitate donations, so that the tax regime supports the said efforts.

v. All donations in cash and kind must be accounted for, with complete transparency to ensure no misuse or misappropriation of donations.

vi. Government hospitals could put up list on the State Department of Health website of the drugs, implants and devices they require for EWS/BPL patients. This way people would donate as per the need of each hospital. This could be revised on a monthly basis.

vii. The  State  Government  may  put  up  a  list  of  drugs,  implants  and devices  which  are  excluded  from  its  budget  for  which  donations would be welcome.

viii. Both the Central and State Governments could create a revolving fund to  take  care  of  recurring  expenditure  of  patients  suffering  from chronic and rare diseases.

ix. The Government could constitute a High Powered Inter-disciplinary Committee to:

-              Develop and update a list of guiding principles/best practices in the area of donations in healthcare.

-              Develop a policy for tackling rare diseases and promoting the development of orphan drugs.

-              Evolve new and innovative methods for attracting spending in the area of healthcare.

-             This Committee could have representatives from various State and Central Government departments, private and government hospitals, non-governmental organizations working in the area of \healthcare, representatives of patients rights groups, representatives of pharmaceutical and other companies in the healthcare sector.