Some patients have run out of medicines and are forced to get stop-gap treatments from doctors.
It was February when Deputy Superintendent of Police Mahadev Maruthi Yadawad managed to procure an imported drug for his three-and-a-half-month-old baby to treat his seizures. A colleague who was in Bengaluru helped deliver it to Kalaburagi, where Mr. Yadawad lives. Little did he know that his child would soon be left with no medicine once the lockdown came into effect.
Life was already tough for patients with rare diseases. Few were aware of what ailed them, treatment was not available everywhere, and where it was available it was incredibly expensive. As their fight for adequate care yielded results, some governments, such as the one in Karnataka, stepped in to help. But since the lockdown, uncertainty has set in again.
Some patients have run out of medicines and are forced to get stop-gap treatments from doctors. In other cases, where hospital visits are common, fear of the virus coupled with failure to get treatment has come as a double-edged sword.
In Mr. Yadawad’s case, he got lucky twice. But that relief ended soon. “My son gets myoclonic jerks. There is an imported tablet that stops it. I live in Kalaburagi and it is not available here. We managed to learn about a pharmacy in Bengaluru and a colleague brought it for us. Then the lockdown came into effect and the Bengaluru pharmacy ran out of stock,” he said. After an intensive search, they found a pharmacy in Hyderabad with some stock left. The drug made it to his hands in a goods vehicle to Raichur and then to Kalaburagi. They eventually ran out of it as well.
“The spasms are continuing now. They come some 30 to 40 times a day. We contacted a doctor in Bengaluru, who has given us a temporary arrangement now,” he said.
Paediatric neurologist Ann Agnes Mathew said it was difficult to see children, who were getting better with treatment, suddenly lose access to medicines. “Parents call us in panic, asking us what is going to happen. It is heartbreaking. For example, there is a particular medicine that stops seizures. A particular rare type of epilepsy that happens to children under the age of two, and 50% of them do badly. Locally, it is known as the salaam attack. It is a powerful and rare form of epilepsy. It is called the West syndrome and is caused by many different factors. Babies are not capable of dealing with it. There are only two drugs — steroids or this medicine. Many children respond only to the medicine, which is not available in India,” she said, adding that an adult seizure was not life-threatening.
There are several such rare diseases, such as haemophilia, thalassemia, sickle cell anaemia and primary immunodeficiencies, auto-immune diseases, Pompe disease, Hirschsprung’s disease, Gaucher’s disease, cystic fibrosis, and forms of muscular dystrophy.
Prasanna Kumar B. Shirol, co-founder of the Organisation for Rare Diseases India and parent to a child with a rare disease, said that apart from drugs going out of stock, physiotherapy that most such children undergo has also stopped since the pandemic arrived. “It has also been difficult for caregivers,” he said.
But he pointed out that patients in Karnataka were slightly better off. “Enzyme replacement therapy has not stopped in Karnataka fortunately, unlike in other States. Otherwise, we would be going back a few steps if we missed one dosage. We are also lucky to have an exclusive ward — Centre of Excellence for Rare Diseases at the Indira Gandhi Institute of Child Health — in Bengaluru. So those who need life-saving drugs can be taken here, though there is fear,” he said.