Therapies for Prader-Willi Syndrome: Types, Benefits, and Costs in India

Understanding Treatment Options and Expenses for Prader-Willi Syndrome

Prader-Willi Syndrome (PWS) is a rare genetic condition that affects growth, metabolism, behaviour and cognition. As per a study, this disorder affects approximately 1 in 10,000 to 30,000 births in India. Growth hormone (GH) replacement therapy is a primary treatment for this condition. In India, various therapies for PWS typically cost around Rs. 5,000 - Rs. 2,00,000 per month, with comprehensive care.

Different Types of Therapy for Prader-Willi Syndrome with Cost

While there is currently no cure for Prader-Willi Syndrome (PWS), several treatments and therapies can significantly improve the health and quality of life of individuals living with this condition. Here are some different types of therapies or treatments for PWS:

1. Growth Hormone Therapy

Growth Hormone (GH) is the only FDA-approved drug for addressing growth failure in children with PWS. Other treatments, such as diazoxide choline (VYKAT XR), have been approved for managing hyperphagia. It supports linear growth, increases muscle mass, reduces fat mass, and improves energy and respiratory function. This therapy starts in early childhood and continues until the desired height, sometimes even into early adulthood, under endocrinologist supervision.

The cost of GH therapy may vary depending on the dose, and it can range between Rs. 50,000 - Rs. 2,00,000 per month.

2. Dietary and Behavioural Management

Uncontrollable appetite is one of the most challenging factors of PWS. Strict calorie-controlled diets, regular exercise, behavioural strategies and environmental controls are crucial to prevent obesity. Dietary therapy for weight management for someone with PWS costs around Rs. 15,000 per month in India.

3. Feeding Support

Infants with PWS often struggle with feeding due to poor muscle tone. They may require special feeding techniques such as high-calorie formulas, feeding tubes, or customised nipples to support adequate nutrition and growth. The estimated cost can range from Rs. 500 - Rs. 5,000 per month. However, the cost may vary based on the method and duration of treatment.

4. Hormone Replacement Therapy (HRT)

People with PWS may require hormone replacement during puberty to compensate for low levels of sex hormones. HRT (testosterone for males and estrogen, progesterone for females) can support sexual development, bone health, mood regulation, and overall well-being. The estimated cost of HRT ranges from Rs. 500 - Rs. 5,000 per month, based on type and dosage.

5. Sleep Disorder Treatment

Sleep apnea and other sleep-related issues are common in individuals with PWS. It impacts their daily behaviour and functioning. Sleep apnea is typically managed using CPAP (Constant Positive Airway Pressure) therapy, while other sleep disorders may require medication or behavioural interventions under the guidance of a sleep specialist. The average cost of sleep disorder treatment is around Rs. 20,000 per month in India.

Challenges in India for Prader-Willi Therapies

Several challenges patients and their families may face while accessing the treatment. It includes:

• High recurring costs of GH injections and support services.
• Limited awareness among general paediatricians and families.
• Access gaps in rare disease centres, especially outside the urban areas.

PWS is a complex, lifelong condition without any cure. Although there are several treatment options available to help patients with this condition. With early diagnosis, structured intervention and long-term care, India can offer hope to thousands of children with Prader-Willi Syndrome. It enables them to reach adulthood healthier, happier and more independent.