Fight against Spinal Muscular Atrophy in India
Understanding Spinal Muscular Atrophy (SMA)
Spinal Muscular Atrophy (SMA) is a rare genetic disorder that affects nerve cells responsible for controlling muscle movement. It primarily targets infants and children, leading to severe muscle weakness and motor difficulties. The root cause of SMA is a mutation in the SMN1 gene, which disrupts the production of survival motor neuron (SMN) protein. As a result, the body’s muscles weaken over time, making it difficult to perform basic tasks such as breathing, swallowing, and moving. Spinal Muscular Atrophy in India has become an alarming concern. Let’s first understand the different types of this condition.
Types of SMA and Their Effects
There are four types of SMA, and each has different levels of severity. Types 0 and 1 severely affect infants, often causing respiratory complications, muscle weakness, and frequent coughing. In contrast, Types 2 and 3 cause gradual loss of movement in the hands and legs, often leading individuals to become wheelchair-bound. Over time, this loss of movement makes even simple tasks more challenging.
India’s Fight Against SMA
In India, approximately 4,000 children are born with SMA each year. Unfortunately, one in 38 people in the country carries the faulty gene that causes this disorder. This situation creates not only emotional stress for families but also significant financial burdens, especially given the high cost of treatments.
The Expensive Treatment Options
Treatment options for SMA are available, but they come with staggering costs. The most expensive is Zolgensma, priced at Rs 17 crore, making it one of the costliest drugs globally. Other options include Nusinersen, which costs Rs 87 lakh, and Risdiplam, the least expensive at Rs 6.2 lakh per bottle. However, Risdiplam is mainly prescribed to adults, making it inaccessible for many children affected by the disorder.
The Inspiring Story of Akshat and Roli Rastogi
Spinal Muscular Atrophy in India has affected Akshat and Roli, siblings aged 26 and 28, both suffer from Type 2 SMA. They rely on Risdiplam to help maintain the motor neurons in their bodies, but the high cost of the drug remains a challenge. A bottle of Risdiplam, priced at Rs 6 lakh, lasts only 12 days, putting immense financial pressure on their family, who run a small stationery business in Varanasi. Despite these obstacles, both siblings remain optimistic. Roli, despite facing accessibility issues during her schooling, now excels in mandala art and poetry. She is also preparing for banking exams.
A Call for Affordable Treatment and Better Healthcare
The story of Akshat and Roli underscores the urgent need for affordable healthcare options for SMA patients. With the soaring costs of treatment and the limited availability of drugs, families like theirs continue to struggle. The need for more accessible and reasonably priced treatments is critical to help improve the quality of life for patients suffering from Spinal Muscular Atrophy in India.
