What is Therapy for Mannosidosis and Its Cost?

Understanding Treatment Approaches and Financial Support for Mannosidosis Patients

Living with a rare genetic disorder like mannosidosis can be challenging, but modern therapy offers new hope. With targeted treatment options, individuals affected by this condition can now manage symptoms more effectively and improve their overall quality of life. Let’s explore how therapy for mannosidosis is changing lives and opening doors to a healthier future.

What is Therapy for Mannosidosis?

Mannosidosis is an inherited disorder, categorised into two types: alpha-mannosidosis and beta-mannosidosis. Here are the different therapy options for both these types:

1. Therapy for Managing Alpha-mannosidosis

For patients with rare alpha-mannosidosis, the first enzyme replacement therapy is considered the most effective. Approved by the FDA, Lamzede (velmanase alfa) works like the missing enzyme alpha-mannosidase, helping the body's cells function normally. Patients take Lamzede as a 10mg injection once a week to treat symptoms of the non-central nervous system.

2. Therapies for Managing Beta-mannosidosis

To treat beta-mannosidosis, a team of healthcare professionals, which included paediatricians and physicians, play a key role in diagnosing and managing neurological and hearing-related issues. They suggest several therapies for addressing different issues, such as:

• Rehabilitation Therapy: Affected individuals must consult rehabilitation therapists to address feeding and swallowing difficulties, along with appropriate medications.
• Physical and Occupational Therapy: These sessions help improve motor skills and muscle strength. Children with hearing loss may also benefit from special education services and the use of hearing aids to improve their quality of life.
• Speech Therapy: For communication challenges, healthcare professionals recommend speech therapy. Similarly, therapy sessions with a developmental paediatrician can help address behavioural issues, while a psychiatrist or psychologist can manage psychiatric concerns.
• Genetic Counselling: These sessions are recommended to help affected individuals and their families cope with these challenges. Emotional and mental health support play a crucial role for the entire family to deal with this rare health condition.

What is the Cost of Therapy for Mannosidosis in India?

1. Treatment Cost of Alpha-mannosidosis

The annual cost of Lamzede (velmanase alfa) enzyme replacement therapy in India is approximately ₹70–75 lakh, based on weekly dosing and current market rates. Enzyme replacement therapy involves 26 vials of the medicine annually.

2.  Treatment Cost of Beta-mannosidosis:

• Speech Therapy: It can cost between 1,000 and Rs. 2,500 per session in private clinics. If you consider online therapy, the cost can range from Rs. 4,000 to Rs. 14,000 per month.
• Physical and Occupational Therapy: For 1 month, the fee can be Rs. 21,999 at acertified network that specialises in the diagnostic procedure of occupational therapy. It can go up to Rs. 61,999 if you opt for a 3-month therapy structure.
• Genetic Counselling: These sessions, conducted by certified genetic counsellors, can be 45 minutes to 1 hour long and cost up to 3,000per session.

Disclaimer: The cost information is sourced from various references and may vary significantly. Consulting renowned professionals for accurate and up-to-date details on Mannosidosis treatment costs would be a wise decision.

The Indian government has increased the grant from Rs. 20 lakh to Rs. 50 lakh in March 2021 under the National Policy for Rare Diseases (NPRD), issued by the Ministry of Health & Family Welfare.

Note that this financial support to treat any category of rare health conditions would not be limited to BPL families. About 40% of the population is eligible according to the norms of Pradhan Mantri Jan Arogya Yojana. However, only individuals who opt for government hospitals can access this facility.