Delhi HC Directs AIIMS: To examine medical records of Patients before commencing treatment for Duchenne Muscular Dystrophy (DMD)

New Delhi: The Delhi High Court recently directed the All India Institute of Medical Sciences (AIIMS) to examine medical records of children with Duchenne Muscular Dystrophy (DMD) in order to frame a recommendation of whether beginning the treatment would likely give any results, while hearing pleas related to treatment of children with rare diseases.

The order was given by a single judge bench of Justice Yashwant Varma while hearing a number of petitions related to children with rare illness like like Duchenne Muscular Dystrophy (DMD), Hunter's syndrome. The plea sought the court's directions to to provide children with free treatment as the medical treatment for them was very expensive.  

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The court noted that exercise involving examination of medical records should be done by the Competent Committee, noting that, "a recommendation in respect of the DMD patients forming part of this batch be placed on the record on or before the next date fixed in AIIMS."

The order came following Dr. Madhulika Kabra's told the court about the various complexitties attached to the treatment of children with illness like DMD, Gaucher and MPS (II). 

Dr. Kabra from AIIMS had apprised the court that the affidavit of AIIMS filed earlier on 26 October 2021 had observed that the patients would be "amenable to treatment", however, keeping in mind that the drugs and treatment protocols presently available themselves represent experimental therapy. It is because of the absence of requisite and adequate data, and because the patients' responses to the treatment and its efficacy in individual cases is yet to be determined. 

Dr. Kabra then told the court that it would be expedient for the Institute to further examine the medical records of these patients in order to frame a recommendation of whether commencement of treatment is likely to yield results. 

The court also took note of the patients who have been diagnosed with Gaucher and MPS (II). The court observed that AIIMS had placed its demand for release of funds upon the Centre on 16 February 2022, which was reiterated in terms of its communication of 27 April 2022. The court directed the ASG to take appropriate actions regarding this. 

As per a media report in the Live Law, this direction is coming days after the court had sought the response of Central Government regarding release of funds as per the demands of AIIMS, which it required to meet the needs of treatment of children suffering from rare diseases. 

In December last year, Justice Palli had given a detailed report directing that the treatment of children with rare illness should begin immediately at AIIMS or other Centres of Excellences as they cannot be made to suffer when they are covered under the policy promulgated by Central Government for the welfare of the children. 

The court had also criticized the union government for not using the unspent budget, which was allocated for people having rare diseases, for the last three years. 

The centre had previously informed the court that it had established an online crowdfunding platform for collecting funds for the treatment of the children, which was made operational as well. This had come in response to a court order in July last year where it had asked the Union Ministry of Health and Family Welfare to immediately launch a dedicated online crowdfunding platform for collecting funds for treatment of the children. 

The court had that time also noted that children with rare diseases should not be denied treatment merely because of the exorbitant price of a drug or treatment, reports the Live Law. 

The next hearing of this case has been scheduled for 1st June, 2022. The court order can be accessed here, https://medicaldialogues.in/pdf_upload/delhi-hc-order-29th-april-2022-416604-175704.pdf 

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