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KEM Hospital becomes the first in western region to start centre for rare diseases

The King Edward Memorial (KEM) Hospital, Parel has become the first hospital in the western region to start a centre for excellence of rare diseases. The Government of India (GOI) will partially sponsor treatment while the rest will be done via crowdfunding.

Welcoming the move, medical experts said rare diseases are treated as “orphan disease” owing to a small number of patients per disease.

The common denominator of rare diseases is the infrequency of their occurrence in the population. World Health Organization (WHO) defines rare disease as often debilitating lifelong disease or disorder with a prevalence of one or less per 1,000 people. There are around 7,000- 8,000 rare diseases.

As per the Foundation for Research on Rare Diseases and Disorder, there are over 7 million people living with rare diseases in Maharashtra. However, patients living with rare diseases have to suffer due to unavailability and cost of medical treatment.

“At present, there were six such centres in India dedicated to the treatment of rare diseases. We are the seventh one and the first in the western region to have the facility,” said Dr Hemant Deshmukh, dean of KEM Hospital. “There is no specific out-patient department (OPD) for such patients as they are identified from different medical departments during diagnosis.”

At the centre, profiles of patients will be directly synced with the centralised portal where citizens can donate money for their treatment. “They (donors) can choose according to enlisted names of hospitals, diseases or through profiles of patients,” said Dr Deshmukh.

The Central government, in its National Policy for Rare Diseases, stated that less than 5% patients have therapies available to treat them. About 95% of rare diseases have no approved treatment and less than one in 10 patients receives disease-specific treatment.

“We have also formed a local committee which comprises of doctors from different departments like hepatologists, cardiologists to look into such cases,” he added. The hospital, with the help of non-government organisations (NGOs) and social workers, will also help raise funds for patients for treatment.

Though doctors have welcomed the initiative, they claim the Central government is not paying much heed to the needs of the patients. They also said that for such diseases for which drugs are available, they are prohibitively expensive, placing immense strain on resources.

Dr Aabha Nagral, liver specialist with Jaslok Hospital and trustee at Children’s Liver Foundation, said, “There are three categories — in some cases like Wilson Diseases, the treatment is readily available. In the second type of diseases such as Lysosomal storage disorders, the treatment cost goes over ₹1 crore. Lastly, there are diseases where treatment is not available except for limited trials or research.”

“Due to less profit, pharma companies are not producing these life-saving drugs. These are the most neglected diseases like orphan diseases,” she added. Hindustan Times

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