Bombay High Court Directs Union Health Ministry to Respond on SSPE Treatment Funding
The Bombay High Court has issued a directive to the Union Ministry of Health and Family Welfare, requiring a formal response to a public interest litigation that seeks financial assistance for the treatment and care of patients suffering from subacute sclerosing panencephalitis (SSPE). This rare neurodegenerative disease is caused by a mutated measles virus and currently falls outside the scope of the National Policy for Rare Diseases (NPRD) established in 2021.
Judicial Bench Hears Heart-Wrenching PIL
A division bench comprising Chief Justice Shree Chandrashekhar and Justice Shyam Chandak presided over the hearing of the PIL filed by Mahadu Belkar, a resident of Panvel. Belkar's sixteen-year-old son, Tanish, battled SSPE for over three years before passing away on March 10. The petition outlines the devastating progression of SSPE, which leads to severe neurological deterioration in children, resulting in vision loss, movement impairment, inability to eat, muscular rigidity, seizures, and eventual coma. Fatality typically occurs due to damage to brain regions controlling vital functions like breathing and heart rate.
The petition makes two primary demands: first, that the central and state governments be directed to provide financial aid for SSPE treatment, and second, that they be instructed to conduct research to find a cure and establish comprehensive policies for affected patients.
Government Positions and Judicial Observations
During the proceedings, the state government's advocate, Onkar Chandurkar, informed the court that Maharashtra currently has no specific scheme for SSPE patients. The central government's advocate, Apurva Gupte, requested additional time to seek instructions from the ministry.
The judges noted that the NPRD does include a provision for a fund offering financial assistance of up to Rs 50 lakh as a one-time payment. However, advocate Kaushal Tamhane, representing Belkar, highlighted the central government's stance that SSPE "is not curable and hence cannot be included" in the NPRD. To support this claim, he presented a letter dated January 30, 2025, from Union Health Minister J P Nadda to MP Ajay Tamta, detailing the decision made by the Central Technical Committee for Rare Diseases (CTCRD).
The bench also took cognizance of a subsequent letter from State Health Minister Prakash Abitkar to Nadda, dated July 19, 2025, urging a review of the CTCRD's decision regarding SSPE.
Legal Arguments and Fundamental Rights
Drawing a parallel to a Delhi High Court ruling concerning Duchenne Muscular Dystrophy, another rare genetic disorder, Tamhane argued that the right to health has attained the status of a fundamental right for individuals suffering from SSPE. The judges acknowledged the gravity of the issues raised in the PIL and emphasized the necessity of a detailed reply affidavit from the Union Ministry. Consequently, the hearing has been adjourned and scheduled for June 19.
Parents' Anguish and Financial Struggles
The courtroom witnessed the presence of parents representing some of the "62 known SSPE cases" in Maharashtra. Outside the High Court, Mahadu Belkar shared with reporters that his son Tanish was in the seventh grade before contracting SSPE. His wife, Jaya, emotionally recounted their ordeal, stating that their son "died peacefully as compared to his suffering for the past three and half years."
Several parents detailed their immense financial and emotional hardships:
- Doctors often advise against hospital visits unless complications like pneumonia arise.
- Families have been seeking government assistance for three years, approaching numerous ministers in Mantralaya without success.
- One parent was forced to sell a house and farm to fund treatment, while another resorted to taking substantial bank loans.
- Notably, all affected children had received the MMR (measles, mumps, and rubella) vaccine, yet still contracted SSPE.
Kalpana Jagtap, a Thane resident and mother of an eight-year-old boy with SSPE, revealed monthly expenses ranging between Rs 50,000 and Rs 55,000. These costs cover physiotherapy, anti-seizure neurological medications, essential hygiene products like diapers, and specialized nutritional food and supplements, including protein.
Imran Shaikh from Mahad in Raigad district poignantly displayed a video of his daughter at age four, contrasting it with a current picture of her at nine years old, now completely bedridden. "All children were normal before this," he lamented.
Expressing desperation, the parents collectively stated that the court represents their "only hope" and "final resort." They added, with profound gravity, "or else the court should allow euthanasia for our children as done in Harish Rana's case."
