“Currents in ALS Research: Harnessing India’s Innate Strength”

Jaydeep M. Bhatt, M.D.
Department of Neurology
College of Physicians and Surgeons
Columbia University

Mr. M.G. is a man who inhales life in its entirety on a daily basis. With unequivocal zest during our interview, he describes his work as a manager for major public park on Long Island, a vivid memory of his wife who succumbed to skin cancer three years ago, and his unconditional love for raising three young daughters on his own. Five months ago, however, he noticed some disturbing changes. He kept tripping on his left leg and noticed a foot drop. This was gradually followed by difficulty getting out a chair and climbing stairs. He was unable to finish even the easiest hikes at work without becoming short of breath. He cut down his hours at work and had to hire help to look after his daughters. At the tender age of 44 years, Mr. G walked into our room leaning heavily on a cane and required a family member to keep him from falling down. He had lost 30 pounds below his usual weight and appeared withered. Mr. G’s muscles were wasting rapidly. He was dying.

Mr. G’s clinical course is typical for amyotrophic lateral sclerosis (ALS), better known as Lou Gehrig’s Disease in the United States for the famous New York Yankees baseball player who was diagnosed in the late 1930’s. It is characterized by a relentless degeneration of the nerve cells which are responsible for controlling motor activities, which leads to progressive wasting of the muscles which control speech, arm and leg movements, and inevitably breathing. Patients gradually watch themselves become shadows of their former selves while loved ones witness, as muscle atrophy and weakness eventually make patients too weak to breathe.

Above all the gloom that surrounds this diagnosis for patients, their families, and various health care providers there is a beacon of hope that drives us: a concerted international research effort focusing on the molecular basis behind the death of the motor nerve cells and clinical trials of promising investigational drugs based on theory. At the Eleanor and Lou Gehrig MDA/ALS Research Center at Columbia University, we are a group of physicians who treat patients with ALS using a multidisciplinary approach to make them as comfortable as possible during their ordeal. As scientists, we are also part of international community of ALS research centers engaging in fruitful research who depend on each other’s work to advance the body of knowledge and improve the human condition. As a famous New York columnist recently postulated, the world is indeed flat and this concept extends to medical research aimed at curing challenging diseases such as ALS. India is well known for her intellectual resources and impressive diaspora of health care professionals around the world. The time has come for India to step on the same stage as the United States, Europe and Japan and become an international force in medical research for all types of neurological disorders.

ALS is a not common; epidemiological studies in the United States and Europe have placed its incidence up to 2.5/100,000 people. It is not well known to Indians except to those in the medical community because there have been not been enough formal population studies in South Asia. Other obstacles to case ascertainment include lack of access to health care for the common Indian and inconsistent medical record keeping. ALS may even be misdiagnosed as other motor neuron diseases. Which leads to the natural question: why should India care about an uncommon neurological disorder when a significant portion of its population cannot even receive primary care?

It’s simple: because India can, and she should.

India’s research scientists and facilities are on par with world class universities. There is no paucity of talent or infrastructure. What India truly lacks is funding and public awareness of uncommon disorders such as ALS. These needs are being met by networks of socially conscious and dedicated Non Resident Indians such as IYPN that are effective conduits for private funding and public health campaigns to conquer illness and improving Indian quality of life. The recent surge in India’s economy and visibility in the international community should breed greater ambition, and not complacency.

On the near horizon I foresee a day when I can tell ALS patients like Mr. M.G that scientists in New Delhi half a world away are leading efforts to find a cure for his disease.

Profile:

Jaydeep M. Bhatt was born in Vadodara, Gujurat and moved to the United States in 1978 with his parents at the age of 2. He grew up in Jackson Heights, Queens and Bethpage, Long Island. After attending Bethpage High School, he attended Columbia University and received a Bachelor of Arts in Biology. He then received his medical degree from the New York University School of Medicine with a concentration in neuroscience. He completed his Neurology residency at Harvard University at Beth Israel Deaconess Medical Center and Boston Children’s Hospital. He is now a clinical fellow at the College of Physicians and Surgeons of Columbia University in the Department of Neurology. He plans to promote awareness about neurological disorders in India with his wife, who has considerable grass roots public health experience with HIV in Mumbai and New Delhi. For more information or to contact him, please visit www.columbiaals.org or e-mail jmb73@columbia.edu