Nation Current Affairs 19 Mar 2019 Funding problems mak ...

Funding problems make life nightmare for rare disease patients

DECCAN CHRONICLE. | ABILASH MARISWAMY
Published Mar 19, 2019, 3:40 am IST
Updated Mar 19, 2019, 3:46 am IST
Those being treated at Indira Gandhi Institute of Child Health have not received treatment in 10 weeks.
Rare diseases are chronic and often life-threatening. Many patients are unable to carry out daily tasks without systematic treatment.
 Rare diseases are chronic and often life-threatening. Many patients are unable to carry out daily tasks without systematic treatment.

Bengaluru: Patients suffering from rare diseases at the Indira Gandhi Institute of Child Health (IGICH) have been left stranded as the hospital has stopped treating them for the last 10 weeks, citing lack of funds.

The patients had approached the High Court against the state government, requesting resumption of specialised treatment for them. After multiple hearings, the state government recently announced that it allocated Rs 3 crore to IGICH. Though the hospital has received the funds, the treatment is yet to resume, the patients complained.

 

The order copy of the High Court too stated that Rs 3 crore has been released, but hospital authorities seem unaware of it.

Rare diseases are severe and chronic and are often life-threatening. The patients with such diseases are unable to perform their daily chores and the quality of their life is compromised drastically. Many such patients face hurdles at every stage, from diagnosis to timely treatment.

There are 11 such patients, and of them six are Gaucher patients and one is an adult onset Pompe patient, who were already being treated at the hospital. But their treatment has stopped since the problem surfaced. The court has also asked the hospital to treat four new patients, who are waiting for treatment.

“We were assured of continuous treatment when the state government sanctioned funds in 2016. But over the last 10 weeks, our children are not receiving any treatment at IGICH. After the recent hearing at the high court, the government has released Rs 3 crore. We hope that IGICH understands the plight of patients and starts the treatment immediately,” said Mr Shivashankar, who is the father of Revathi – a Gaucher patient.

“By understanding the condition of rare diseases patients, it is imperative that provision for medications and treatment be made beforehand as the lives of these patients are at stake. The delay in treatment can lead to worsening of their condition,” he said.

Doctors at IGICH have reportedly told the patients that they too are helpless. Calls to the hospital remained unanswered.

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Location: India, Karnataka, Bengaluru




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