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Rare diseases treatment: Centre files detailed affidavit in Delhi HC

"In purported compliance of the orders dated 23.03.2021 and 19.04.2021 , respondent no. t has filed an affidavit, ltowever the said affidavit does not deal with various issues of concern that were noted by the Court in these orders.

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The Central Government filed a detailed affidavit in the Delhi High Court on Thursday wherein it has addressed the question of capping funding for treatment of rare diseases at Rs 20 lakh and also gives details about the crowdfunding option as well as talks about the progress made vis-a-vis National Policy for Rare Diseases 2021. The matter is listed for further hearing on July 14.

The Delhi High Court had ordered on May 20 this year had sought detailed replies. It’s order said: “In purported compliance of the orders dated 23.03.2021 and 19.04.2021, respondent no. t has filed an affidavit, however, the said affidavit does not deal with various issues of concern that were noted by the Court in these orders. In this additional affidavit, the respondent no.l will specifically deal with the issue regarding the prescribed limit of Rs 20 lakh per patient, as noted in paragraph 5 of the order dated 19.04.2021, as also state its detailed response in respect of the “crowd-funding option” that the Government was expected to explore as an alternative option to finance the treatment o/ such patients. It is made clear that no further time will be granted to respondent no. I to file this affidavit.” 

The affidavit by the Centre on Thursday says:

“it is submitted that the utilization of fund of Rs 40 crore transferred to the Rare Disease Account of AIIMS, New Delhi, shall be governed as per the existing provision envisaged at para 10(i) of National Policy for Rare Diseases(NpRD), 2021 (Annexure A), which is reproduced as under:

“l0(i) Financial support up to Rs 20 lakh under the Umbrella Scheme of Rashtriya Arogya Nidhi(RAN) shall be provided by the Central Government for treatment, of those rare diseases that require an one-time treatment (diseases listed under Group l). Beneficiaries for such financial assistance would not be limited to BPL families, but extended to about 40% of the population, who are eligible as per norms of Pradhan Mantri Jan Arogya Yojana, for their treatment in Government tertiary hospitals only.”

It further says;

“…the limited resources of the government are to be used in a way that maximum persons are benefited out of it. It is further submitted that keeping in view the limited resources and to provide maximum possible benefit to the beneficiaries and further in order to cover up all type of patients suffering from rare diseases…”

It further says;

it is submitted that for the diseases/ disorders amenable to one-time curative treatment, financial support will be provided under the umbrella scheme of RAN i.e. an amount up to Rs. 20 lakh shall be provided by the Central Government. The diseases requiring long-term / lifelong treatment having a relatively lower cost of treatment, the financial support will be provided under the schemes of the State Governments. The diseases for which definite treatment is available but involves very high cost and lifelong therapy, the policy provides assistance to the patients by the creation of Digital Platform for crowdfunding inviting donations from individuals and corporate donors. Donors will have a choice to make donations to different centers of Excellence (CoEs) and for the patients being treated by these CoEs. Funds will be utilized in a decentralized manner i.e. every center of Excellence (CoE) will have its own Rare Disease Fund which will be utilized with the approval of CoE’s in charge.”

While addressing the progress on the crowdfunding option, the affidavit says;

“That as regards the detailed response in respect of the crowdfunding option’, it is submitted that this Ministry is continuously making most sincere efforts in this direction. However, the efforts have suffered a setback due to the adverse situation created by the intense second wave of Covid-I9 and the answering respondent Ministry being the Nodal Agency for handling the same..”

Learned counsel appearing for the petitioner said that initially, the Delhi High Court said the entire unspent budget allocated for rare diseases for years 2018-19, 2019-20, 2020-21 was to be moved to a fund called the Rare Diseases Fund which shall be managed by the AIIMS. Later the UOI reduced the funding to the unspent budget of only 2020-21. And now there is a cap on even that.

“…It was never the idea of the learned predecessor (Justice Prathiba Singh) to put a cap on the funding,” Justice Rekha Palli said, adding the court has its limitations and cannot intervene in the internal functioning of the respondent. 

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Justice Palli further said that it is open for the petitioners to respond to the affidavit. The Delhi High Court had earlier constituted a committee with Dr. Renu Swarup as its Chairperson and directed the committee to file a detailed report on major aspects of the said subject.

The court had also earlier opined that the “right to health and healthcare was a fundamental right, and therefore, finalization of the policy on rare diseases could not be kept pending indefinitely.”

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