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Dated Nov 23, 2022

Children live with rare immunity disorder, state decides on funds

Health Minister Had Promised To Bear Cost Until Aid Resumes From Centre

Chandigarh: Despite promising to cover the treatment cost, the Punjab government has failed to come to the rescue of children living with rare, life-threatening immunity disorder hypogammaglobulinemia. The reason it can't decide from which head the money will come.

The 25 children with this condition in Punjab need lifelong treatment that costs between Rs 20,000 and Rs 40,000 a month. Unaffordability has forced their families to stop the treatment, putting their lives at risk. Earlier, the Post Graduate Institute of Medical Education and Research (PGIMER) in Chandigarh took care of them and the Centre paid for it under the Rashtriya Bal Swasthya Karyakram (RBSK). This help is on hold while the health ministry is in the process of implementing the national rare disease policy.

Punjab's neighbouring states of Haryana and Himachal Pradesh support their patients of this disorder. Skipping treatment since June has deteriorated the condition of 11-year-old Dolly at Malout. Her father, Mukesh Kumar, a farm labourer, fears losing her. He said: "The treatments costs Rs 25,000, a hefty sum for me. I hope the government resumes funding her treatment before it's too late." Raja Singh, a small farmer from Gidderbaha, has exhausted all his savings on the treatment of his 16-yearold son. The monthly bill is 35,000. He said: "I took a loan for continuing his treatment, but won't be able to sustain its cost for long." On October 12, TOI had highlighted the is sue, prompting Punjab health minister Chetan Singh Jouramajra to declare that the state will pay for the treatment of these children until the central funding resumes.

Dr Sandeep Gill of the Punjab health department maintained that the government was sensitive to the situation. He said: "Since there was no provision for this cost in the budget, the department is looking for a head from which the funds can be released. We also consider taking a loan from Punjab Health System Corporation's Cancer and Drug Addiction Treatment Infrastructure Fund (CADA)."

Social activist Captain Gaurav Preet Singh Brar, who took up the issue with the Punjab health department, said: "The condition of some of the children has be come critical I hope the mo ney comes at the earliest." Congress member Sukhpal Singh Khaira said: "The state government, which has crores of rupees for 'false adver tisement', has none for the treatment of a few needy children."

For implementing the national rare disease policy, the Centre has identified eight centres of excellence, including the PGI, and fixed Rs 50 lakh for each patient's treatment. PGI paediatrician Dr Ankur Jindal said: "We have completed all the formalities and just await the approval."