Rare disease patients in UP awaiting treatment support despite judicial intervention

New Delhi: Mr Dinesh Jaiswal, father of 3 MPS patients, is tired of the prolonged wait for continuity of treatment for his children.  Last year, Mr Jasiwal, a tailor from a remote village had received 3 lakhs for each of his children as a treatment fund from the State Government. Post which, the treatment started for the children and their condition started improving. However, the funds weren’t enough to continue the treatment. And since the past few months, the health of these children has started deteriorating due to non-availability of the treatment.

In May 2019, after witnessing the plight of these patients, the High court of Uttar Pradesh had multiple hearings in the span of one month to understand the situation. After considering all the aspects, the High court ruled in the favor of the children and ordered SGPGI to re-initiate treatment. The order has directed treatment for these children under RAN and has asked the patients to submit their files to the central government through SGPGI on 15^th July 2019. Post which treatment will be provided to these children at SGPGI.

Commenting on this Advocate Prem Chand Chauhan said, “While the judiciary has understood the urgency of providing treatment a faster approach needs to be taken into consideration for these patients. While the Central Government processes the funds for treatment through RAN, the State Government should provide the funds of 1.5 lakhs which was promised at the court hearing on 17^th May 2019, to address the intermediate treatment needs for these patients at SGPGI.”

The aggrieved father Mr Dinesh Jaiswal said, “As a parent, seeing your child suffering from any disease is always very painful. It’s been more than 8 months since my children have stopped receiving treatment. My children’s condition has been deteriorating day-by-day due to this delay. With the recent court verdict, we now see a ray of hope. In the meanwhile, I would like to request the State Government to understand my children’s situation and help my children by at least initiating the treatment till the funds from the Central Government is received.”

There are about 21 such rare disease patients in Uttar Pradesh, and 7 of them have already died due to lack of treatment support from the government. Mr. Dinesh and his children are one among them who are awaiting treatment. The Centre must introduce a collaborative policy to address the problem because states alone do not have the money to tackle the issue. The onus now lies with the State Government to ensure immediate treatment initiation for these children as everyday counts.