(This is the second part of a two part story, read the first here.)
ALS does not distinguish between the rich and the poor, but it demands huge financial resources from everyone, if any treatment is desired. Ajay Gupta spends over ₹1 lakh a month in order to help his mother, Usha Gupta (61), who was diagnosed with ALS in November 2010. “Medications are around ₹35-40,000 rupees every month. And it was a must to hire a nurse and a nursemaid as well. So if you add up the medication cost, salaries for the nurse and aayah, cost of daily physiotherapy (Rs.1100 per day), and the opportunity cost, you could say that I easily spend around ₹1.2-1.5 lakhs per month,” Ajay said.
“To provide good care, I need to earn well to make that happen. And in order to earn enough, one needs sufficient time to put in the work needed,” Ajay says. His current routine makes it impossible for him to go to the office for at least two days a week. In order to accommodate the duty of taking care of his beloved mother; he has shifted three jobs since 2013.
“Initially, after giving care to my mother, I used to work remotely till 2-3 a.m. at night. But then I had to resign from my job in the U.S. because that arrangement was no longer working for me or the company,” Sohil said. Now, Sohil works from 5:30 p.m. to 11 p.m. as an independent consultant. “It’s psychologically straining, because apart from all the resources, treatments, and help needed for my mother, I need to provide for my kids as well.”
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There is no support from insurance agencies when it comes to ALS. Receiving health insurance for irreversible conditions is not common. “Insurance only covers reversible illnesses or conditions. Anything that is chronic or irreversible is bound to demand a large amount of money,” said Dr. Joy Desai, a neurologist in Mumbai.
However, Mrs. Veena (who, as mentioned in Part 1, succumbed to ALS in 2017) did get reimbursed for the cost of immunotherapy that she went through at a hospital. But that was just one of the many treatment methods that her daughter Devaunshi, and the rest of the family had tried.
A salient feature of the Union Government’s National Policy for Rare Diseases (NPRD), 2021, is that ‘financial assistance up to ₹50 lakhs will be provided to the patients suffering from any category of rare diseases and getting treatment in any of the Centre of Excellence (CoEs) identified’.
The NPRD, 2021 also states that there are multiple definitions of what a ‘rare disease’ is. World Health Organisation (WHO) defines a rare disease as an ‘often debilitating lifelong disease or disorder with a prevalence of 1 or less, per 1000 population’. However, the NPRD also states the average prevalence threshold used to define rare diseases is from 1 to 6 in 10,000 people.
A total of 4579 patients suffering from rare diseases have been enrolled into the ICMR’s National Registry for Rare and Other Inherited Disorders (NRROID), in 2021-22, according to the data provided by Dr. Bharati Pawar of the Union Health Ministry in the Lok Sabha on March 31, 2023.
Six out of one lakh (1,00,000) people have ALS, according to a study “Global Epidemiology of Amyotrophic Lateral Sclerosis: A Systematic Review of the Published Literature” by Chio et. al. This amounts to less than 1 in 10,000 having ALS, and thus, should qualify as a ‘rare disease’ in India, as per the definitions stated in the NPRD.
There are three different categories of diseases listed under the NPRD, and ALS is not mentioned in any.
Effectively, there is absolutely no monetary support for PALS and their caregivers from the government and it’s the family that has to bear the complete burden. Ajay, Sohil, and Devaunshi come from humble backgrounds in urban areas like Mumbai and Kolkata. But there are many PALS and caregivers who have minimal to no financial resources. It’s distressing to consider that the caregivers of this financially draining illness, but they’re also in a helpless state of getting absolutely no mode of assistive living.
Community effort and camaraderie
Being a rare disease implicates its lack of awareness in the general public. But within the medical fraternity too, there is no real help or counselling provided beyond the diagnosis and prescriptions – which itself is a challenge. “It would have been so helpful if we knew the pathophysiology and trajectory of the disease, generally, in the long-term,” Ajay said.
To address the issues of the lack of guidance in daily routines, gathering financial resources, and preparing the caregivers and PALS for what’s to come, in 2015, Satvinder Kaur, whose mother had ALS then (but succumbed to it in 2018), founded the ALS Care & Support Foundation (ALSCAS). This compassionate community functions like a support group offering 24x7 assistance and consultations to PALS and their caregivers.
“A colleague of mine said that ‘you don’t know where the angels of help are going to come from’, and that’s the impact ALSCAS had with all the support, care, comfort, and knowledge they’ve provided us. If it weren’t for them, my mother would not have been alive right now,” Sohil said.
“I have encountered patients who didn’t even have the resources to purchase a pulse oximeter. When a fruit seller from a remote area in the district of Mandi in Himachal Pradesh, who had ALS, spoke to us, we somehow managed to send an inverter, bi-pap machine, battery, and a few other essential resources,” Ms. Kaur mentioned. ALSCAS has gathered and donated funds, and equipment, along with guidance and knowledge for those who come from financially weaker households across the nation.
Be it nutrition, timely procedures, or equipment needed for assistive living at subsidised rates or donations, ALSCAS’s patient advocacy, through experiences of other families or discussions with medical practitioners, helps the caregivers with nuanced practices that increases the PALS’s quality of life to some degree. ALSCAS is one, if not the only, community pushing for the inclusion of ALS in the list of rare diseases.
Lack of awareness, misdiagnosis, late diagnosis adds to the financial burden
As mentioned in Part 1, it takes an average of 8 to 15 months for diagnosis.
Through ALSCAS, Ms. Kaur, has come in contact with over 500 families who have or had a PALS, and from her experience she has come across many cases which were misdiagnosed, too. After the onset of symptoms, families rush to physicians, ENTs, orthopaedics, physiotherapists and other health professionals seeking a diagnosis or plan of action to counter the effects, Ms. Kaur mentioned. “Some have gone to the extent of surgical interventions i.e. knee replacement, ankle and elbow surgery, throat surgery and even a shocking incident of installing a pacemaker. Also, there are others who got diagnosed when they have already reached the advanced stage of breathing difficulty.” This is not pocket-friendly either.
While there is little awareness about the disease in public and among the medical fraternity too, Ms. Kaur and community support groups like ALSCAS come as a ray of hope. For Sohil, had it not been for the symptomatic strategies and guidance offered about various decisions like tracheostomy, feeding tubes, acquiring bipap machines (which help the PALS breathe), and ventilators, his mother would not be alive.
“Many cases go undetected, especially among those who come from financially weaker backgrounds, because of lack of education and awareness”, says Ms. Kaur, as she plans to integrate more families of caregivers and PALS into ALSCAS.
