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Diverts Funds From Another Scheme As A Stop-Gap Arrangement

Chandigarh:Ā Families of 25 children suffering from hypogammaglobulinemia a rare, life-threatening immunity disorder can heave a sigh of relief as the Punjab govern ment has finally started providing promised financial assistance for their treatment.

The health department on Thursday released around Rs 11 lakh which was credited to the bank accounts of family members of the patients. As there was no budgetary provision, the health department borrowed funds from another sche me as a stop-gap arrangement. The state government will continue to cover the treatment of these children until the central funding Oresumes.

This followed after TOI on November 23 highlighted the delay on part of the Punjab government in providing financial assistance to cover the treatment cost, which was promised by health minister Che tan Singh Jouramajra after TOI highlighted the plight of the pati ents on October 15 after discontinu ation of their treatment.

Mukesh Kumar, a farm labourer, whose 11-year-old daughter Dolly could not take the treatment for want of funds, will resume it from Friday at PGIMER, after a gap of more than three months. “Her condition was getting worse and we were worried about her well-being. We have already lost our elder son to the same disease,” said Kumar, who requested the government to also cover transportation costs.

The treatment of hypogammag. lobulinemia, which is caused by low serum immunoglobulin or antibody levels, involves infusion of intravenous immunoglobulin (IVIg) ona life-long basis. With the help of regular treatment, patients can lead normal and productive lives. However, the cost of treatment is expensi ve, which ranges between Rs 20,000 and Rs 40,000 a month. A majority of the patients belong to the economi cally weaker section of society.

Dr Sandeep Gill of the Punjab health department held technical issues as the reason for a slight delay in arranging the funds. “As there was no provision in the budget, we had to find a source of funding which we have managed to arrange,” he said.

Dr Abhinav Trikha, mission director, NHM, Punjab, maintained that the government would continue to aid these children till they start getting treatment under central-funded National Rare Disease Policy. He added that the state health department is in constant to uch with the officials of PGIMER to ensure that treatment of these children resumes under the central scheme at the earliest.

Social activist Captain Gaurav Preet Singh Brar, who was pursuing the issue with the Punjab health department, thanked the government for covering the treatment cost and urged that the monthly treatment bills be reimbursed in time so that patients face such inconvenience.


These children were undergoing treatment at PGIMER, Chandigarh, and the funds were being provided by the Centre under Rashtriya Bal (RBSK), Karyakram Swasthya which covered 30 diseases. Though the immunity disorder was not covered under RBSK, the Centre, at the request of the Punjab government, started providing funds in 2016.

However, it stopped releasing funds under RBSK earlier this year, after it came up with the National Rare Disease Policy. Punjab’s neighbouring states of Haryana and Himachal Pradesh started providing support to their parents soon after the central funding was stopped under RBSK.

The central government has identified eight centres of excellence and PGIMER is one of the centres. PGIMER has completed all the formalities for implementation of the National Rare Disease Policy and just awaits approval. Under the scheme, the central government will provide Rs 50 lakh for each patient’s treatment.

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