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Appeal to cover rare diseases under National Health Policy

NewsAppeal to cover rare diseases under National Health Policy

NEW DELHI: Meryl is 29 years old and is suffering from a rare metabolic disorder called “pompe”, an autosomal recessive metabolic disorder that damages muscle and nerve cells throughout the body, which was diagnosed nine years ago. But she is finding difficulty in accessing proper treatment due to the disease’s rarity and high cost of the medicines.

Meryl’s disorder is among a few health issues which affect only a very small portion of the population and whose cost of treatment is also quite high. In view of these impediments, the patients and their relatives have demanded the category of rare diseases to be included in National Health Policy. However, despite the Delhi High Court’s order for releasing a budget of Rs 100 crore towards the treatment of such diseases, the Centre has held back the fund and announced that the policy is being “kept in abeyance”.

Speaking to The Sunday Guardian, Meryl said that she was diagnosed in 2010 but it wasn’t until 2011 that she started receiving the treatment. “One of the main reasons for the delay was that the cost involved was really huge, which a normal person cannot afford.” She said, “We understand that the government cannot provide free medicines to each and every patient, but arrangements can be made so that at least half of the cost is covered.” The government should acknowledge the fatality of these diseases, she added.

Lysosomal Storage Disorders Support Society (LSDSS) president Manjit Singh told this newspaper that if not treated in time, these rare diseases become lethal. “We want this policy to be implemented for the children who were not getting any treatment,” he added. LSDSS is a non-profit organisation started by 585 families of the patients suffering from rare diseases all over the country.  Singh said that they have demanded for creation of a Rs 100-crore corpus to treat such patients under 60:40 ratio, where 60% of the cost will be borne by the Centre and the rest by the states. “The Court has given the government another nine months’ time to frame and amend the policy. Meanwhile, we have also asked that the patients be given an interim treatment,” he added.

Shashank is a young photographer who is suffering from gaucher disease, which is a rare genetic disorder characterised by the deposition of glucocerebroside in cells of the macrophage-monocyte system. Speaking to this correspondent, Shashank said that he wants every patient to receive treatment on time so that they can lead a life like any other healthy person. “I had a lot of problems; my growth was less; so when I was 14, I looked like six or seven. But after taking treatment, I am living a normal life,” he said. Meanwhile, the LSDSS members have appealed to Prime Minister Narendra Modi and Ministry of Health and Family Welfare to reinstate National Policy for Treatment of Rare Diseases (NPTRD). According to the policy, the government has to start a pilot programme under the corpus fund kickstarting the interim process of treating eligible patients.

“The problem right now is that awareness among the medical fraternity is also less and the diagnosis rate is low. This is because there is no treatment policy,” said Shashank. He emphasised that the patients can lead a healthy life if timely diagnosis and treatment can be provided to them. Singh said that about 240 children, who are undergoing enzyme replacement therapy (ERT) for the diseases, get treatment funds through national and international charitable trusts. “The corpus fund is urgently needed because some of the therapies cost from Rs 50 lakh to Rs 3 crore per year. The dosage and treatment also increases according to the weight of the child,” he added.

Speaking to The Sunday Guardian, Dr Seema Kapoor, professor and head of Department of Genetics at Maulana Azad Medical College in New Delhi, said, “The number of cases is 1 in 2,000, but if you look at it collectively, then it is pretty common. A rare disease causes morbidity and mortality and is a lifelong debilitating disease.” Asked to comment on the police framework, she said, “At the moment, there are a lot of discussions going on, so it may take some more time to implement the policy.” Echoing similar sentiments, member of Rare Disease policy Sub-committee, which was constituted after the High Court’s order to make suggestions towards framing a national policy, Dr I.C. Verma said that the previous policy has been ended. “Work on the new policy is going on, so we just have to wait and see,” he added.

Even as the government is working on the policy, patients have appealed to bring it in as soon as possible so that no life is lost due to the fatality and they can live a life of dignity.

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