Include CMT nerve disorders in multiple disability category and in niramaya health insuran
Include CMT nerve disorders in multiple disability category and in niramaya health insuran
The Issue
I am writing this petition as a citizen living with Charcot-Marie-Tooth Disease Type 4C (CMT 4C), a rare and progressive genetic neurological disorder. My medical evaluations at AIIMS, New Delhi, and genetic testing via MedGenome confirm that this condition is not merely a single physical impairment but a complex Multiple Disability that severely impacts every facet of daily existence.
1. Why CMT(Charcot Marie Tooth) is a "Multiple Disability"
Unlike many other forms of CMT has many Type which is particularly aggressive and affects multiple sensory and motor systems simultaneously. My clinical reports show:
Motor Disability: Severe sensori-motor axonal polyneuropathy in all four limbs, leading to Foot Drop, muscle wasting, and loss of balance.
Sensory Disability (Hearing): BERA tests show non-recordable auditory stimulation, confirming auditory neuropathy or significant hearing impairment.
Sensory Disability (Vision): VEP tests reveal prolonged P100 latencies, indicating demyelination of the optic nerves and visual delay.
Skeletal Deformities: The condition has caused secondary structural issues like Kyphoscoliosis (spinal curvature), requiring long-term orthopedic intervention.
Under the Rights of Persons with Disabilities (RPwD) Act, 2016, a combination of these impairments qualifies as a Multiple Disability. Therefore, CMT(Charcot Marie Tooth)must be explicitly included in the eligibility criteria for the Niramaya Health Insurance Scheme.
2. The Struggle with Daily Life & Financial Burden
Living with CMT(Charcot Marie Tooth) requires lifelong, multi-disciplinary care, including:
Regular Physiotherapy: To manage muscle contractures and maintain mobility.
Orthotics: Continuous need for Ankle-Foot Orthoses (AFOs) and spinal braces to prevent further skeletal degradation.
Specialized Supplements: Research indicates that targeted support like Nicotinamide Riboside (NAD+ boosters), methylcoblamin ,High-Dose Biotin, and Benfotiamine are essential to decelerate axonal degeneration.
Advanced Diagnostics: Frequent NCV/EMG studies and MRI scans to monitor nerve and brain involvement after these test for confirmation of CMT type to do genetic testing like PMP 22, whole exome sequence etc
3. Our Demands
Recognition as Multiple Disability: Include CMT(Charcot Marie Tooth) under the Multiple Disability category to allow access to the Niramaya Health Insurance card.
Increase Coverage to ₹5 Lakh: The current limit is insufficient for a progressive disorder. We urge the government to increase the annual limit to ₹5 lakh to cover surgeries, specialized therapies (like Ayurvedic and Physical therapy), and advanced nerve-support supplements.
Early Access to Care: Ensure that patients diagnosed via genetic testing can access these benefits immediately to prevent symptom escalation and maintain a dignified life.
Conclusion
CMT is a "silent" struggle where our nerves slowly lose their ability to communicate with our muscles, eyes, and ears. This petition is a plea for equality and healthcare justice. We deserve a fair chance at a dignified life, supported by the very insurance schemes designed for India’s most vulnerable citizens.
We urge the relevant authorities to recognize CMT(Charcot Marie Tooth)and grant us the protection we need.
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The Issue
I am writing this petition as a citizen living with Charcot-Marie-Tooth Disease Type 4C (CMT 4C), a rare and progressive genetic neurological disorder. My medical evaluations at AIIMS, New Delhi, and genetic testing via MedGenome confirm that this condition is not merely a single physical impairment but a complex Multiple Disability that severely impacts every facet of daily existence.
1. Why CMT(Charcot Marie Tooth) is a "Multiple Disability"
Unlike many other forms of CMT has many Type which is particularly aggressive and affects multiple sensory and motor systems simultaneously. My clinical reports show:
Motor Disability: Severe sensori-motor axonal polyneuropathy in all four limbs, leading to Foot Drop, muscle wasting, and loss of balance.
Sensory Disability (Hearing): BERA tests show non-recordable auditory stimulation, confirming auditory neuropathy or significant hearing impairment.
Sensory Disability (Vision): VEP tests reveal prolonged P100 latencies, indicating demyelination of the optic nerves and visual delay.
Skeletal Deformities: The condition has caused secondary structural issues like Kyphoscoliosis (spinal curvature), requiring long-term orthopedic intervention.
Under the Rights of Persons with Disabilities (RPwD) Act, 2016, a combination of these impairments qualifies as a Multiple Disability. Therefore, CMT(Charcot Marie Tooth)must be explicitly included in the eligibility criteria for the Niramaya Health Insurance Scheme.
2. The Struggle with Daily Life & Financial Burden
Living with CMT(Charcot Marie Tooth) requires lifelong, multi-disciplinary care, including:
Regular Physiotherapy: To manage muscle contractures and maintain mobility.
Orthotics: Continuous need for Ankle-Foot Orthoses (AFOs) and spinal braces to prevent further skeletal degradation.
Specialized Supplements: Research indicates that targeted support like Nicotinamide Riboside (NAD+ boosters), methylcoblamin ,High-Dose Biotin, and Benfotiamine are essential to decelerate axonal degeneration.
Advanced Diagnostics: Frequent NCV/EMG studies and MRI scans to monitor nerve and brain involvement after these test for confirmation of CMT type to do genetic testing like PMP 22, whole exome sequence etc
3. Our Demands
Recognition as Multiple Disability: Include CMT(Charcot Marie Tooth) under the Multiple Disability category to allow access to the Niramaya Health Insurance card.
Increase Coverage to ₹5 Lakh: The current limit is insufficient for a progressive disorder. We urge the government to increase the annual limit to ₹5 lakh to cover surgeries, specialized therapies (like Ayurvedic and Physical therapy), and advanced nerve-support supplements.
Early Access to Care: Ensure that patients diagnosed via genetic testing can access these benefits immediately to prevent symptom escalation and maintain a dignified life.
Conclusion
CMT is a "silent" struggle where our nerves slowly lose their ability to communicate with our muscles, eyes, and ears. This petition is a plea for equality and healthcare justice. We deserve a fair chance at a dignified life, supported by the very insurance schemes designed for India’s most vulnerable citizens.
We urge the relevant authorities to recognize CMT(Charcot Marie Tooth)and grant us the protection we need.
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Petition created on 15 April 2026