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Experts underscore need for healthcare funding for rare diseases

HYDERABAD: There is an urgent need for healthcare funding for rare diseases and that governments must prioritise this crucial component to aid people in managing rare diseases, experts noted at an event commemorating the International Rare Disease Day on Sunday.

The event organised by the Lysosomal Storage Disorders Support Society (LSDSS), a patient support group for rare diseases, in collaboration with the Centre for DNA Fingerprinting and Diagnostics (CDFD) and the Nizam’s Institute of Medical Sciences, stated that Lysosomal Storage Disorders are rare genetic disorders with an incidence of 1 in 7,000 people worldwide.

There is currently no cure for LSDs, and therapy is prohibitively expensive, ranging from Rs 50 lakh to Rs 2 crore per patient, making it unaffordable. The event emphasised the critical need for heightened awareness, improved diagnosis, and more affordable treatment choices for LSD patients in the country, the experts noted. Roughly 700 patients in the country are currently known to be impacted by various types of LSDs. While the number is estimated to be around 65 in Telangana and Andhra Pradesh, the annual treatment cost is prohibitively high, and the government funding is required to improve access to therapy and care for LSD patients, they felt.

“It’s an emotional time for me today as I see children all around painting and actively engaging in the event. We used to receive letters from Lysosomal Storage Disorder sufferers asking for help, but we didn’t know if there was a solution because of the exorbitant treatment costs. We have now written a letter to the Central government requesting that funds be released for rare disease patients in our state, and the state government is also willing to assist these people financially. These patients need our help and we request continued help from the government so that the lives of these children can be saved,” said Dr Nagari Beerappa, NIMS director.

Rare diseases are chronic in nature, but they can be treated with early diagnosis and timely intervention. The government has taken some positive and encouraging efforts, beginning with the National Policy for Rare Diseases in 2021, followed by an increase in funding to Rs 50 lakh per patient in 2022, and lastly disbursement of funds as well as enrolment of eligible patients in 2023, said Dr Ashwin Dalal, head of the Diagnostics Division at the Centre for DNA Fingerprinting and Diagnostics. “The announcement of a Centre of Excellence for Rare Diseases in Hyderabad is yet another testimony of the progress in the right direction. The need of the hour is continued funding for group 3 disorders such as Lysosomal Storage Disorders. While the government is providing monetary assistance, the contribution of corporates through CSR will help save more lives. Indigenous production of drugs will help reduce the exorbitant treatment costs,” he averred.

Manjit Singh, LSDSS president stated that the event was aimed at creating awareness about rare diseases such as LSDs, and advocate for better treatment, care, and government support for patients. “We are delighted to have collaborated with the CDFD and NIMS to organise the event. Through this event, we wanted to create awareness about rare diseases and advocate for better support and resources for patients and their families. Now that money for around 130 eligible patients has been released by the Ministry of Health and Family Welfare, we request the government to continue its support towards this cause by setting up an annual budgetary allocation, particularly for patients suffering from rare diseases such as LSDs. This could go a long way in ensuring sustainability of funding,” he noted.

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