World Parkinson Day: Experts call for awareness & timely therapies for such rare disorders

New Delhi: “The burden of Parkinson’s Disease and Parkinsonism disorders is rapidly rising in India. Not long ago, Parkinson’s was considered a disease prominent only in Western countries. However, in the last two decades, its incidence and prevalence in India has increased to 300-400 people per lakh population. The WHO has predicted that India would see a massive 200-300% increase in Parkinson’s disease over the next two to three decades.” says Dr. Prashanth LK, Specialist at the Center for Parkinson’s Disease & Movement Disorders, Manipal Hospitals, Bengaluru in his comments on the World Parkinson’s Day.

Dr. Prashanth LK, considered Bengaluru’s foremost expert on Parkinson’s disease, further added, “Bengaluru has seen a major increase in the number of movement disorders patients in recent years, especially Parkinson’s disease and Parkinsonism disorders, at the specialized Movement Disorders Clinics in the city. According to recently published research covering three major movement disorders clinics at Bengaluru, Mumbai and Kolkata, it was discovered that 65% of total patients coming to these clinics had Parkinsonian disorders.”

Dr. Prashanth LK informs that the research revealed some interesting findings about Indian people.

“Some of the neurodegenerative diseases were found to be common or limited only to India.  For example, the SCA-12 (Spinocerebellar ataxia-12) is almost exclusive to the Aggarwal community. Wilson’s disease, a rare but treatable disorder affecting liver and brain, is actually quite common in India. Several different types of Parkinsonism disorders have also been noticed in the Indian population. These atypical parkinsonian disorders account for about a quarter of the movement disorders patients seen at specialized movement disorders clinics, indicating the burden and requirement for more research in these fields,” he added.

Dr. Ritu Jha, HOD & Senior Consultant – Neurology, Sarvodaya Hospital, Faridabad believes that the incidences of Parkinson’s Disease increase with age, with almost 1% of people above 65 years suffering from this illness.

“Though Parkinson’s is primarily a neuro-degenerative disease of old age (usually above 60 years), about 3-5% cases are of young people. More cases of Parkinson’s are now being recognized in younger population due to increasing awareness. It affects males twice as much as females. According to some studies, the prevalence is also slightly higher in rural population in India compared to the urban,” said Dr. Ritu Jha.

“While patients of Parkinson’s Disease are doing much better these days with availability of more treatment options, increasing life span means there is more disability and disease burden. Parkinson’s patients face many challenges in terms of treatment. First and foremost is the acceptability of this lifelong disease that requires medicines as long as one lives. Other challenges include cost of the medicine, access to a health facility where Parkinson’s treatment is available and adapting to the disease by making changes in one’s lifestyle to live with the disorder. Many patients, when diagnosed, first go into denial and then become withdrawn, as they are not as good functionally as earlier,” Dr Jha added.

Treatment options

Parkinson’s patients also have many non-motor symptoms such as depression, mood changes and cognitive decline. These are hardly recognized by physicians or family members as part of the disease, and hence are addressed poorly.

Treatment for Parkinson’s has come a long way with new drugs, procedures like Deep Brain Stimulation and effective rehabilitation programs. Apomorphine injections and pumps are also available to decrease the “off periods” when medication, namely levodopa, is not working optimally, but these need to be used under strict supervision. Gene therapy and stem cell therapy are also being evaluated as newer modalities but are still in experimental stages.

The Government needs to partner with neuro-physicians to spread awareness about Parkinson’s Disease in India, establish rehabilitation centres and palliative care centres where patients suffering from advanced stages of the disease can be provided care. The cost of Deep Brain Stimulation (DBS) surgery also needs to be brought down so that more and more Parkinson’s patients can benefit from it,” said Dr. Ritu Jha.

Talking about upcoming therapies on treatment for Parkinson’s patients, Dr. Prashanth LK said: “Work is going on regarding both therapeutic outcomes and understanding the pathophysiology of Parkinson’s. Insights from genetic research have given us hope for specific gene-based therapies for certain subsets of Parkinson’s disease patients. Early trials are going on for possible disease modification and cure-based approaches. We may possibly have dramatic disease modifying therapies over the next couple of decades for Parkinson’s disease.”

The focus of the government in India has usually been on treatable and preventable disorders such as nutritional and infectious diseases. Funding for ageing-related disorders is slowly being increased now, as it is now being appreciated that age-related disorders would constitute major healthcare burden in a few decades in India.

“The Government should encourage private funding agencies, philanthropic organizations and CSR initiatives of corporates to be channelled towards improving the care and support system of Parkinson’s disease and other aging disorders.  A good government policy impetus can give a boost to research in this field,” added Dr. Prashanth LK.

About 10-15 years back, there used to only 5-10 exclusive Parkinson’s disease specialists in India. In the last 10 years, there has been a sudden increase in the number of neurologists who exclusively specialize in Parkinson’s Disease (called Movement Disorders Specialists). India now has an exclusive society for movement disorders, called Movement Disorders Society of India, which is making impact globally.

During the last 10 years, exclusive research groups working for Parkinson’s disease have also been formed, like the Parkinson Research Alliance of India (PRAI), to collaborate, understand and possible get breakthroughs for movement disorders.