Dr. Hemangi Sane is the founding president of “Asha Ek Hope foundation for MND/ALS”, a not for profit organization. She completed her MBBS from the prestigious GS Medical College & KEM Hospital, Mumbai University and MD in Internal Medicine from the renowned New York Medical College, USA. In 2004, at the age of 29, during her medical practice in New York, she was diagnosed with Amyotrophic Lateral Sclerosis (ALS), a Motor Neuron Disease (MND). ALS/MND is a progressive degenerative neurological disorder affecting only the motor neurons, which are the cells that control voluntary muscle activity. As per available medical literature and research, in most cases, patients suffering from ALS/MND do not have a lifespan of more than 10 years post diagnosis. ALS/MND causes muscle weakness which spreads all over the body, resulting in difficulty in walking, hand movements, standing up, bending, speaking, swallowing and breathing.
Post diagnosis, she consulted the best doctors in USA who told her that her life span would not be more than 3-5 years. Eventually, she started getting dependent for her daily activities and could no longer continue working in USA and had to return to India. In 2009, after learning about the effective treatment of autologous stem cell therapy from various credible research and media reports, she underwent autologous stem cell therapy at Lokmanya Tilak Municipal General Hospital and College, Mumbai (public hospital). During and post autologous stem cell therapy Dr. Sane’scondition was stabilized and improvements were seen in her symptoms. Due to the treatment, she has been able to outlive the general life expectancy of patients suffering from ALS/MND. She has not only been able to survive but has also managed to live a dignified and respectable life because of autologous stem cell therapy which was provided to her in a public hospital. Through her non-profit organization “Asha Ek Hope foundation for MND/ALS” Dr. Sane supports patients with ALS/MND. She envisions an independent and better quality of life for patients with ALS/MND. Her positivity, compassion and enthusiasm are an inspiration to others.
The concerned Government department(s) with the intent to regulate the stem cell research jointly issuedguidelines in 2007 which were subsequently revised in 2013 and were further revised through the National Guidelines of Stem Cell research (NGSCR), 2017 which were released in October, 2017 by the Government of India. However, these guidelines were not only restrictive but also appeared to be in violation of the fundamental right to healthcare of the patients. The concerned government department under the guise of NGSCR, 2017 issued various notices because of which public and private hospitals all throughout the country had to discontinue the on-going autologous stem cell therapy treatment of lakhs of patients. As Dr. Sane came to know about the discontinuation of this treatment, she was disappointed as the last hope (autologous stem cell therapy treatment) for lakhs of patients like her, suffering from serious incurable and fatal disabilities and conditions was arbitrarily put to an end and such patients would not be able to benefit from this treatment thereafter. As a result, she took up the initiative and filed various RTIs to seek information about the sudden discontinuation of on-going autologous stem cell therapy across the countryfrom the concerned department of Government of India.
However, the department did not provide any information within the stipulated time period of 30 days. Due to which she filed the first appeal for which the concerned government department replied saying that the information asked was confidential and cannot be shared.Consequently, Dr. Sanefiled a second appeal, adjudicating upon the same,Hon’ble Chief Information Commission, New Delhi passed an order dated May 22, 2019. In the order, the Hon’ble Information Commissioner asked the Respondents i.e. the concerned government department to re-examine the contents of the RTI applicationand provide point wise information held and available with the public authority to Dr. Sane and also directed the concerned government department to suomotu disclose the information on their website in the larger public interest of all stakeholders within a period of 15 days from the date of receipt of the order.
Through her NGO, she helps a lot of patients and basis the credible research and efficacy of available medical literature and research papers, she believes that autologous stem cell therapy effectively treats patients with various incurable and fatal disabilities and conditions. She is also a living example of the same. As mentioned before the Government Department ’s intervention through NGSCR 2017 led to depriving such patients of this treatment and jeopardizing their right to life and right to medical care. As a result, she filed a PIL beforethe Hon’ble High Court of Delhi highlighting the infringement of these rights of several suffering patients, due to the denial of autologous stem cell therapy.
Dr. Sane herself has experienced the benefits of autologous stem cell therapy and she wants that this treatment should be widely available to all the needy patients of our country. However, due to vested interests of some government officials the availability of this treatment is being stalled. Dr. Sane’s only aim is to create awareness about how regressive and restrictive the NGSCR, 2017 is and highlight the alleged defaults and various procedural and statutory violations and offences committed by the government officials which are presently sub-judice before the Delhi High Court under the PIL. [doc.hemangi@gmail.com]
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