State govt to provide medication for patients with rare diseases

Vijayawada : Medical, health and family welfare special chief secretary M T Krishna Babu promised a slew of healthcare measures for rare disease community in the state besides listing out several steps the state government has already taken for them.

He said that the state government would initiate measures to provide affordable medications/drugs for rare disease patients by seeking a list of such drugs from director of medical education, AP.

He also promised to seek a Centre of Excellence for Rare Diseases designated by the Centre either at AIIMS Mangalagiri or Andhra Medical College, KGH, besides utilising the services of ASHA and ANM health workers for creating awareness and identification of rare disease patients.

Krishna Babu participated in the World Rare Disease Day organised by ‘The Indian Organisation for Rare Diseases’ (IORD), a non-profit advocacy body in a hotel here on Saturday.

The event, attended by healthcare experts, policymakers, and patient advocates, spotlighted the urgent need for systemic interventions to address the challenges faced by over 90 million Indians living with rare diseases.

Participating as the chief guest, the special CS said the IORD president and CEO Prof Ramaiah Muthyala put in tremendous efforts in the field of rare diseases and his passion and dedication to this cause are truly commendable.

The participants addressing the gathering said World Health Organization (WHO) estimates that 65 people in one lakh people are affected by rare diseases. However, statistics indicate that nearly 5 per cent of the population suffers from some form of rare disease. While some of these conditions are partially treatable, others require lifelong treatment, often with expensive medications.

In 2021, the Government of India introduced the National Policy for Rare Diseases, which provides a structured approach to addressing these conditions. Under this policy, individuals can register at one of the 12 designated Centres of Excellence for Rare Diseases. However, given that India has a population of nearly seven to eight crore people affected by rare diseases, these centres alone are insufficient.

The speakers said every state government must formulate its own policy to address this pressing issue. Unfortunately, due to a lack of awareness and vocal representation from affected individuals, governments have not allocated substantial budgetary resources for rare disease treatments. Dr Ramaiah Muthyala, IORD president, said, “Andhra Pradesh has the potential to lead India in rare disease care. Prioritising these steps will save lives and set a national benchmark.”