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BHOPAL — Medical bodies in Madhya Pradesh have issued a stern warning regarding the state’s healthcare infrastructure, noting that state-run medical colleges still lack dedicated rare disease centres. Five years after the notification of the National Policy for Rare Diseases (NPRD), specialized care remains concentrated in a singular national hub—AIIMS Bhopal—leaving thousands of patients across the state navigating a fragmented and overburdened referral system.
The growing chorus from the medical community calls for the state’s super-speciality medical colleges to establish their own Centres of Excellence (CoE). Advocates argue this expansion is vital to improving diagnostic accuracy, streamlining treatment access, and reducing the “diagnostic odyssey” often faced by families dealing with rare genetic disorders.
Why It Matters: The “Rare” Paradox
While individual rare diseases affect small numbers, their collective impact is a significant public health challenge. Global estimates suggest there are over 9,000 documented rare diseases, with India home to an estimated 70 to 96 million people living with these conditions.
In Madhya Pradesh, the challenge is twofold:
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Delayed Diagnosis: A lack of localized expertise often leads to years of misdiagnosis.
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Geographic Barriers: For a family in Rewa or Jabalpur, the journey to Bhopal for every consultation and treatment cycle is a prohibitive financial and physical burden.
“Rare diseases are not rare as a public health burden; they are only rare in the frequency of each specific condition,” says a public health researcher. “When care is consolidated into one building for an entire state, the system naturally creates bottlenecks that can be fatal for children with progressive disorders.”
The Policy Gap: Funding vs. Infrastructure
The National Policy for Rare Diseases (NPRD) 2021 was a landmark shift, providing financial assistance of up to Rs 50 lakh per patient for treatment at notified Centres of Excellence. However, this funding is strictly tied to these designated hubs.
Currently, the Union Ministry’s rare disease portal lists only 12 institutions nationwide as CoEs. In Madhya Pradesh, AIIMS Bhopal stands alone as the designated national centre. While AIIMS provides world-class care, doctors’ associations argue that the state’s own super-speciality infrastructure in cities like Jabalpur, Indore, Gwalior, and Rewa is being underutilized.
Expert Commentary: A Call for Decentralization
Medical leaders emphasize that relying solely on a central institute limits the policy’s reach.
“There must be rare disease treatment centres in medical colleges across the state,” says Dr. Akash Soni, a national executive member of the Federation of Medical Association. “The Centre provides the funding—up to Rs 50 lakh per case—but we need the local infrastructure to utilize it. Our super-speciality colleges are already equipped with much of the necessary base technology; they just need the formal designation and specialized training.”
Dr. Pankaj Shukla, former Director of the National Health Mission (NHM), echoed these sentiments, urging the state health department to take the initiative. He noted that rare disease care requires a comprehensive ecosystem, including:
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Genetic counseling services
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Advanced neonatal screening
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Specialized rehabilitative care
Public Health Implications: The Cost of Waiting
The absence of regional centres has profound socio-economic consequences. Rare diseases often manifest in early childhood, leading to permanent disability or premature death if not managed.
| Impact Area | Consequences of Lack of Regional Centres |
| Financial | High out-of-pocket costs for travel and private testing. |
| Diagnostic | Average of 5–7 years to reach a correct diagnosis. |
| Treatment | Bottlenecks in fund disbursement and drug procurement. |
| Caregiver Burden | High rates of burnout and depression among family members. |
For many, the current system is a “referral loop” where patients are sent from district hospitals to medical colleges, only to be told they must go to AIIMS Bhopal for registration under the national policy.
Limitations and Counterpoints
Despite the push for expansion, some experts urge caution. Establishing a CoE is not merely a matter of branding a wing of a hospital.
Infrastructure isn’t everything: Critics point out that even existing CoEs face funding bottlenecks and bureaucratic delays in drug imports. Expanding the number of centres without addressing the global shortage of “orphan drugs” or the high cost of gene therapies may not immediately improve outcomes.
Resource Allocation: Some health administrators argue that with limited budgets, the state must prioritize primary healthcare. However, proponents of rare disease centres counter that the NPRD funding comes from the Central Government, meaning the state primarily needs to provide the administrative and clinical framework to tap into those resources.
The Road Ahead
The debate in Madhya Pradesh reflects a broader national struggle to move rare disease care from policy to practice. As the theme for Rare Disease Day 2026—”More than you can imagine”—suggests, the scale of the problem requires an equally imaginative response.
For the patients of Madhya Pradesh, the measure of success will not be the existence of a national policy, but whether their local medical college can provide the diagnosis and treatment they need to survive.
Medical Disclaimer
Medical Disclaimer: This article is for informational purposes only and should not be considered medical advice. Always consult with qualified healthcare professionals before making any health-related decisions or changes to your treatment plan. The information presented here is based on current research and expert opinions, which may evolve as new evidence emerges.
References
- https://medicaldialogues.in/news/education/medical-colleges/doctors-body-flags-lack-of-rare-disease-centres-in-mp-medical-colleges-168913
