PUNE: While the National Policy for Rare Diseases exists only on paper, the plight of patients and their caretakers goes beyond comprehension. Many patients and doctors treating them say that the financial burden, as well as lack of facilities, add to the woes of these fighters.
Speaking to Sakal Times, Mayuresh Pathak, a resident of Pune who is suffering from Fibromyalgia, which causes widespread muscle pain and tenderness, said that he is unable to earn a living because of his condition.
“I am mostly at home as travelling is not possible for me. I used to live with my mother but after she expired I am all by myself. In such a situation, I have to visit the general hospital in the city. The problem there is that I have to visit the hospital on different days for different type of doctors. To add to my plight, the medicines as well are not available in the hospital,” said Pathak.
In addition to this, he further added that many tests are not done in the hospital and hence it is very expensive to use a private hospital for these tests.
“The fact that I am well educated but cannot work makes things worse for me,” said Pathak.
He also highlighted that the national policy may change this scenario for him as the hospital would have to provide the treatment for free and all treatment and medicines will be available there without the patient having to run around for them.
Echoing similar sentiments, Amarjeet Singh from Dhanori, shared the story of his daughter who will turn three in December. She is suffering from urea cycle disorder. It is a genetic disorder caused by a mutation that results in a deficiency of one of the six enzymes in the urea cycle. These enzymes are responsible for removing ammonia from the bloodstream.
“I have a stable IT job, however, we struggle with our finances. Due to the rare condition of my daughter, my wife had to leave her job and now, she takes care of her full time. Moreover, my daughter needs a supplement that I have to buy from the United States of America (USA) as the cost difference is much. This supplement along with the physiotherapy, speech therapy and other therapies of my daughter, we spend almost Rs 30,000 every month. We struggle to meet both ends,” said Singh.
Speaking about the need for the policy, city-based Dr Chaitanya Datar, paediatrics and expert in genetic epidemiology, said that the cost of treatment varies from patient to patient.
“These children need supplement food. And the food can vary from Rs 2,000 a can to Rs 9,000 a can, depending on the quality and the quantity needed for one child in a month. They are dependent on these cans for their diet and their growth depends on them. Hence, having a policy that supports these children and such patients is of paramount importance,” said Datar.
WHAT ARE RARE DISEASES?
- According to the National Policy for Rare Disease, rare diseases are, in most cases serious, chronic, debilitating and life-threatening illnesses, often requiring long-term and specialised treatments. In addition, they often result in some form of handicap, sometimes extremely severe.
- Moreover, rare diseases impact children. Fifty per cent of new cases are in children and are responsible for 35 per cent of deaths before the age of one year, 10 per cent between the ages of 1 and 5 years and 12 per cent between 5 and 15 years.
- The impact on families is often catastrophic at emotional and financial levels, as the cost of treatment is very high.