No patient benefitted from Rs 50 lakh help scheme to treat rare disease patients: Varun Gandhi
New Delhi (PTI): No patient has so far benefitted from a health ministry scheme which assures an assistance of Rs 50 lakh to people with rare diseases, BJP MP Varun Gandhi said on Saturday, warning that it endangers the lives of 432 patients, mainly children below six years of age.
Ten children have died waiting for treatment, he tweeted, urging Union Health Minister Mansukh Mandaviya to act immediately by clearing these payments.
In a letter to Mandaviya, Gandhi noted that the 'National Policy for Rare Diseases, 2021' was launched by the Ministry of Health and Family Welfare on March 30, 2021 to save the lives of patients suffering from rare diseases.
According to an amendment made to this in May, 2022, all groups of rare disease patients were assured a financial assistance of Rs 50 lakh for treatment, he said.
However, he said in the letter, even after several months of the announcement, not a single patient has been able to reap the benefits of this scheme, "threatening the survival of 432 patients, mainly children below six years of age".
Most of these children suffer from Lysosomal Storage Disorders (LSD) such as gaucher, pompe, MPS I, MPS II and fabry disease, he said.
According to the Ministry of Health and Family Welfare crowdfunding platform, around 208 Lysosomal Storage Disorder patients can immediately be put on therapy since the Drugs Controller General of India-approved treatments for most of these diseases have been available in India for many yeas, Gandhi said.
Despite several reminders from the ministry, he said, the 10 Centers of Excellence (CoEs) constituted under the policy are yet to seek financial assistance for patients with rare diseases.
According to organisations committed to the cause of rare disease patients, more than half of the CoEs have not sent a single treatment request to the health ministry, he added.
"Over ten children have lost their lives while waiting for treatment. Therefore, I request that the treatment of these 208 children at the Centres of Excellence start immediately. I hope you will consider this matter seriously as any delay in this regard will result in the loss of lives of many more children," he said.
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Rickelton's ton in vain as SRH beat MI by 6 wickets
Mumbai (PTI): Ryan Rickelton's whirlwind unbeaten ton was overshadowed by Heinrich Klaasen's unbeaten 65 as Sunrisers Hyderabad defeated Mumbai Indians by six wickets in an IPL match here on Wednesday.
Chasing an imposing 244-run target, Travis Head (76 off 30) and Abhishek Sharma (45 off 24) shared 129 runs for the opening wicket to set the platform for SRH.
Klaasen (65 not out off 30 balls) then displayed his all-round hitting abilities to guide SRH home with the help of Nitish Kumar Reddy (21) and Salil Arora (30 not out off 10) in 18.4 overs.
Earlier, Rickelton's knock powered MI to 243 for five.
MI rode on a 93-run stand between Rickelton (123 not out off 55 balls) and Will Jacks (46 off 22) in 7.1 overs for the opening stand to power the side.
MI skipper Hardik Pandya scored a valuable 31 off 15 balls before being dismissed.
Praful Hinge (2/54), Eshan Malinga (1/29), Sakib Hasan (1/39) and Nitish Kumar Reddy (1/31) were the wicket-takers for SRH.
Brief Scores:
Mumbai Indian: 243 for 5 in 20 overs (Ryan Rickelton 123 not out; Praful Hinge 2/54).
Sunrisers Hyderabad: 249 for 4 in 18.4 overs (Travis Head 76, Heinrich Klaasen 65 not out; AM Ghazanfar 2/51).
