Former Delhi deputy chief minister Manish Sisodia's wife Seema Sisodia is said to be suffering from Multiple Sclerosis (MS). One of the most challenging things about the disease is that it looks very different in each patient. It is an unpredictable neurodegenerative disease that impacts the brain and spinal cord. In India, the actual prevalence is yet to be known as it is not much talked about and awareness is too little. Yet, it is estimated that 20 out of 1 lakh people are affected, doctors tell The Health Pioneer. They said as the medicines are quite costly, these should be brought under the essential medicine list to ease the financial burden on the patients.
For the last few days, Sunita Verma (30) had been complaining of vision problems. She thought she needed a lens. Her doctor found that her eyes and her brain were not in sync. She was suggested for further investigations. A Magnetic Resonance Imaging (MRI) revealed that there were lesions in her brain that led to her diagnosed MS. She has optic neuritis (irreversible optic nerve damage) as a result of MS, said her doctor.
Sunita was lucky that her doctor was alert enough to diagnose her disease that helped her start treatment early.
But many are not lucky like Sunita.
In fact, the invisible MS is the worst case. In such cases, the patients report the symptoms to doctors, and yet, the disease remains untraced. Some symptoms are very normal like fatigue and depression and doctors may think that the patient is exaggerating. That makes the disease difficult to trace, say the neurologists.
Also, in many cases, MS is diagnosed late as people are not much aware about this disease. A survey conducted by an MS associated organization revealed that some of the patients got afflicted with the MS as early as 19 years of age, but officially diagnosed at 21. Another said, “Oh I started to have my suspicions when I was about 28. Doctors told me I just had to stress less and it would all calm down. It just escalated more for each year so I Got my MS diagnosis in august 2019.”
Yet another said treatment started when he attained 32. “In hindsight symptoms from late teens/ early 20´s. Number of lesions on MRI correlated with this. Too busy with work / life to get seen. Until my leg stopped working and I couldn’t get up the stairs.”
MS can cause symptoms such as extreme fatigue, lack of coordination, weakness, tingling, impaired sensation, vision problems, bladder problems, cognitive impairment and mood changes, causing physical, emotional and financial drain on the patients.
Dr Sunil K Narayan, Neurologist from JIPMER, Pondicherry said that “the symptoms are different from patient to patient across a lifetime but can include weakness, numbness, vision problems, tremors and even paralysis. There's no cure for MS. It can afflict at any age but usually occurs around 20 and 40 years of age, considered to be the most productive period of any person’s life.”
“MS damages the myelin sheath, or protective covering, that surrounds nerve fibers in the brain and spinal cord, making it the most common demyelinating disease of the central nervous system. Most important investigation tool is MRI,” added Dr RK Dhamija, Neurologist and Director of the Delhi-based IHBAS.
He stressed on the need for increasing awareness of MS so that diagnose is made early and disability is prevented.
More than 2.8 million people of all ages around the world are living with MS. However, thankfully, more cases of MS are now being diagnoised throughout the country, said Dr Dhamija.
Most people with MS experience periods of new symptoms or relapses followed by quiet periods of disease remission. These relapses can take days or weeks to develop and the remission periods can last for months or even years.
“MS itself is not the cause of death because MS is not fatal. Rather, the symptoms caused by the progression of MS can lead to other conditions that are ultimately fatal. Pneumonia, infections, and falls are common causes of death directly connected to MS symptoms,” said Dr SM Katrak, Neurologist, Jaslok Hospital, Mumbai.
There are very few studies done and no information is available on the MS cases in the rural population. However, increased awareness about the condition among patients and several new therapies that have come up can make treatment cost effective and efficient.
“MS is affecting the urban population majorly. But this disease is important due to various reasons as it typically involves young individuals; however, it also occurs in kids and adolescents. Females are more affected compared to males,” said Prof MV Padma Srivastava, Head of Department, Neurology and Chief of Neurosciences Centre, AIIMS Delhi.
“If people face such conditions at an early age, their quality of life gets affected as they struggle to do even basic chores of daily routine. In this disease, people lose vision suddenly; lose balance and suffer weakness in one hand. Though they recover after the first attack generally, the disease relapses and attacks continue to occur due to which the patient does not recover and they even land onto a wheelchair.”
Studies suggest that genetic risk factors increase the risk of developing MS, but there is no evidence that MS is directly inherited. Environmental factors, such as low Vitamin D and cigarette smoking have also been shown to increase the risk of MS, she added.
The doctors said that several new immunomodulator based therapies have come up over the past few years.
These drugs can stave off multiple sclerosis attacks and slow down the disease, they said,
"The patient can now take medicines orally. Earlier, there were only injections given to patients on a frequent basis which were very expensive, but now there are medicines like teriflunomide (active metabolite of leflunomide) and bimethylflumorate which can be taken once a day and is much easier for patients."
But they agreed that the cost of some of the most effective medicines — which have undergone frequent price hikes over the years — can put added stress on the patients who find it difficult to bear as they are already struggling with the disease in the prime years of their life.
Added Dr Sunil K Narayan, “There’s no cure. But disease modifying therapies are available through prohibitively costly and they need to be made available for long periods by bringing under essential drug list and by supply through public health care facilities as routinely available medications.”
Dr (Prof) Rohit Bhatia at the Department of Neurology, AIIMS Delhi shared that MS doesn’t require any surgical treatment and can be cured through drugs and medicines. In fact, AIIMS Delhi has started an MS related registry.
Dr Bhatia said, “This is India’s first National Registry on MS and related demyelinating disorders. We have formed a collaborative team in twenty-seven centres for the registry. The AIIMS, Delhi has India’s first dedicated center for treatment of multiple sclerosis too since 2019.
“Our motive is that the disease should be diagnosed early and people get instant treatment so that they can live a good life. We aim to spread awareness so that people know about the disease and timely treatment. We have diagnoses and medicines to treat the disease. If patients come at the right time MS can be controlled.”
Signs and symptoms of MS can vary widely but may include:
Numbness or weakness in one or more limbs that typically occurs on one side of your body at a time, or your legs and trunk
Electric-shock sensations that occur with certain neck movements, especially bending the neck forward (Lhermitte sign)
Tremor, lack of coordination or unsteady gait
Partial or complete loss of vision, usually in one eye at a time, often with pain during eye movement
Prolonged double vision
Blurry vision
Slurred speech
Fatigue
Dizziness
Tingling or pain in parts of your body
Problems with sexual, bowel and bladder function
New treatments
Several MS patients in the state of Tamil Nadu have been on Tysabri (natalizumab), which costs around USD1,152 per dose. While some patients are enrolled in the Chief Minister’s Comprehensive Health Insurance Scheme and get free medicines, others are on a weekly drug called Rebidoss (interferon beta 1a), which costs USD81 per dose. Avonex (interferon beta-1a) costs USD102 per dose. The cost of MS treatment varies from USD 4,064 per year to USD270,954 per year.
AIIMS, Delhi had conducted a meta-analysis on the efficacy of the medicine and concluded that azathioprine is better than other US FDA approved medicines in the market for MS. Other medicines such as Interferons, prescribed by most doctors, cost $4,067 per year, azathioprine costs only $136 annually.
Azathioprine, sold under the brand name Imuran among several others, is a generic medicine and now available in the market.
Another treatment, hematopoietic stem cell transplantation (HSCT) or bone marrow transplant, allows clinicians to gain an upper hand in managing dreaded diseases like leukaemia and lymphoma along with MS.
In April 2018, Natco Pharma launched a generic version of teriflunomide tablets used for the treatment of relapsing and remitting forms of MS in India.
Teriflunomide is sold by Sanofi (Euronext: SAN) under the brand name of Aubagio in the US market, Natco Pharma said. The generic product is priced much lower than other alternate options. In August 2018, Sanofi's specialty care global business unit Sanofi Genzyme launched its MS treatment drug Aubagio in India.
Dr Anuradha HK, from Aster CMI Hospital said many of these medicines are a boon since they cost half of what earlier medications cost, and also help improve the patient’s condition and protect them from relapses. "Earlier, many would stop the medication midway due to the high cost. By taking affordable medicines they can get better sooner," she told a newspaper.
GLOBAL SCENARIO
Multiple studies are ongoing globally, including trials at the Tisch MS Research Center of New York, a trial in the United Kingdom and others. While mesenchymal stem cells offer exciting potential, other researchers are working on converting skin cells into myelin-repairing stem cells. These skin cells are easily obtained and have no potential for being rejected as they come from the person’s own body.
