Timely intervention by Karnataka State Government Saves Lives of Rare Disease Patients

Bengaluru: The battle for Rare disease patients in Karnataka has been going on
since 2015 (Refer to WRIT Petition #: 19061 / 2015 (GM-RES)) and at today’s hearing at the State High
Court brought a respite to their plight. The State Government made a promising move by assigning 40
per cent of the allocated funds for the treatment of patients suffering from Lysosomal Storage Disorder
(LSDs). These funds will support existing and recently diagnosed rare disease patients with
uninterrupted treatment. This order comes as a silver lining to the patients and families who have been
struggling to receive treatment support for years.
The fund allocation in the ratio of 60:40 between the central and state government is as per the
National Policy for Treatment of Rare Disease (NPTRD) which was announced in 2017. The Karnataka
Chief Minister and Chief Secretary had addressed several letters to the Central Government requesting
for funds and received no concrete response. To which, Chief Justice AS Oka of The Karnataka High
Court, directed the advocate of the Central Government to seek support with the rest (60 per cent) of
the treatment fund.
Rare Disease patients lead a debilitating life. They suffer from Lysosomal Storage Disorders (LSDs) a
group of genetic disorders that radically impact the quality of life. These patients suffer from lack of self-
sufficiency and are unable to do even simple daily tasks. The delay in treatment can lead to worsening of
their condition. These funds will support patients in receiving timely treatment, helping them lead near
normal lives.
Mr. Prasanna Shirol, Co-founder and Director, Organization for Rare Disease India (ORDI) said, “We
thank the State Government of Karnataka for addressing the need for treatment and committing their
financial share towards treatment of LSD patients and considering treatment for existing patients which
will help save lives of children. The State of Karnataka is the only State in the country who are supporting
rare disease patients. I applaud the Government of Karnataka for taking necessary actions and
addressing rare diseases a public health priority facilitating accessible treatment for all.”
While this brings relief to the rare disease patients in Karnataka, we hope the Central Government will
address the need for continuous treatment and support from the Government to rare disease patients
across India.