Advocacy Groups Urges Union Ministry to Prioritize Rare Diseases Within its 100-day Action Plan

In a letter addressed to Health  Minister Nadda, the advocacy groups underscored the ongoing challenges faced by patients, particularly children, grappling with chronic rare conditions such as Lysosomal Storage Disorders (LSDs). 

Rare disease patients and advocacy groups have raised urgent concerns over the policy and funding lapses affecting their treatment access and outcomes. 

In a direct appeal to Union Health Minister JP Nadda, they highlighted critical policy gaps. They pressed for immediate interventions to safeguard the lives of those suffering from rare genetic disorders.

In a letter addressed to Minister Nadda, the advocacy groups underscored the ongoing challenges faced by patients, particularly children, grappling with chronic rare conditions such as Lysosomal Storage Disorders (LSDs). 

They emphasized that despite initial benefits from government policies, including the National Policy for Rare Diseases 2021 (NRDP), significant gaps persist in allocating and utilizing funds crucial for treatment.

‘Lives of many patients, mostly children, suffering from chronic rare genetic disorders are still fraught with uncertainty due to the lack of sustainable funding," said a spokesperson for the advocacy groups.

Key Issues

The letter outlined three key recommendations aimed at addressing these issues. 

Firstly, they called for sustained funding beyond the one-time provision of up to INR 50 Lakh for Group 3a conditions. They argued that this is essential to ensure continuous care and life-saving interventions for affected patients.

According to the letter, "The current budgetary provision up to INR 50 lakh as one-time support hinders the process of saving lives for patients diagnosed with these conditions."

Secondly, the advocacy groups urged equal prioritization of all notified disease conditions under the NRDP 2021. They highlighted discrepancies in treatment accessibility among different rare diseases at designated Centres of Excellence (CoEs), which they claim leads to unnecessary delays and heightened health risks.

"The lack of equal weightage to all notified disease conditions under NRDP 2021 exacerbates delays in treatment and poses serious risks to patients," stated another spokesperson.

Lastly, the groups emphasized the need for enhanced accountability and efficiency within the CoEs to streamline processes and ensure optimal utilization of allocated funds. They lamented a perceived lack of improvement despite repeated appeals to both CoEs and the Ministry.

"Despite our repeated appeals, no improvement has been made in enhancing the accountability and efficiency of CoEs," the letter noted.

Inclusion in 100-Day Action Plan

Additionally, the advocacy groups urged the Union Ministry to prioritize rare diseases within its 100-day action plan. They stressed that immediate action is necessary to improve the quality of life for thousands of rare disease patients nationwide.

"We urge the Union Ministry to include rare diseases as a top priority in the 100-day action plan and thereby improve the lives of thousands of patients across the country," the groups concluded.

The appeal comes amid ongoing challenges in healthcare accessibility for rare disease patients, highlighting persistent gaps that threaten the well-being of those affected. 

As the Ministry of Health and Family Welfare prepares to address these concerns, stakeholders remain hopeful for meaningful reforms to alleviate this vulnerable patient group's burdens.