Open Letter to Indian Government.
Dear Indian Authorities,
This is a letter to bring to your attention to a devastating illness that many in India are unaware of, including doctors at our esteemed institutions. Amyotrophic Lateral Sclerosis (ALS), also known as Motor Neuron Disease (MND), is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost and as a result ALS patient become speechless, motionless and in later stages lose self respiratory ability.
There are roughly one lakh patients in India suffering from this illness and 95% of the cases survive between 1 to 5 years. A small percentage continue to live more than 10 years, with the late scientist Stephen Hawking being a good example of an ALS patient living more than 50 years.
We are all part of the ALS/MND Community in India consisting of more than 300 ALS patients and their families. Presently, there is no cure for the disease, and the disease requires management which is arduous and involves fairly complex processes, and many patients and their loved ones who are affected are neither informed nor equipped to provide for the best that is possible. In this letter to you, we have attempted to curate a list of suggestions to address this debilitating illness, and seek your support in making this a reality.
There are a lot of govt. aided research (genetic, stem cell) in the US, UK and other countries currently underway. And Govt of other countries are taking huge interest in funding these researches for fighting this devastating illness and establishing policies to ease life of CALS(caregivers of ALS) and PALS (Patients with ALS).
Until a cure is found, caring for an ALS patient involves receiving multi-disciplinary care from a portfolio of doctors including a Neurologist, Pulmonary Specialist, Speech Therapist, Nutritionist, Occupational and Physiotherapist, Psycho Therapist, and a primary physician to prescribe medicines. Additionally, giving daily care to an ALS patient is a full time job, and most patients either take help from a nurse, an attendant or helping staff, and sometimes both of them. This financially drains the family.
To summarize, please find below our suggestions on steps the govt. can take in partnership with the community of patients to help tackle this ghastly disease and provide possible support to those in need. We request you to consider:
Please refer to following few website/links build by caregivers in India, for ALS India community. Owing to the lack of above mentioned facilities, these are the straws holding the community together presently.
We will be highly grateful for your attention to this matter and look forward to your response.
Thanks and regards,
All ALS care and Support India Community members
[email protected]
This is a letter to bring to your attention to a devastating illness that many in India are unaware of, including doctors at our esteemed institutions. Amyotrophic Lateral Sclerosis (ALS), also known as Motor Neuron Disease (MND), is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost and as a result ALS patient become speechless, motionless and in later stages lose self respiratory ability.
There are roughly one lakh patients in India suffering from this illness and 95% of the cases survive between 1 to 5 years. A small percentage continue to live more than 10 years, with the late scientist Stephen Hawking being a good example of an ALS patient living more than 50 years.
We are all part of the ALS/MND Community in India consisting of more than 300 ALS patients and their families. Presently, there is no cure for the disease, and the disease requires management which is arduous and involves fairly complex processes, and many patients and their loved ones who are affected are neither informed nor equipped to provide for the best that is possible. In this letter to you, we have attempted to curate a list of suggestions to address this debilitating illness, and seek your support in making this a reality.
There are a lot of govt. aided research (genetic, stem cell) in the US, UK and other countries currently underway. And Govt of other countries are taking huge interest in funding these researches for fighting this devastating illness and establishing policies to ease life of CALS(caregivers of ALS) and PALS (Patients with ALS).
Until a cure is found, caring for an ALS patient involves receiving multi-disciplinary care from a portfolio of doctors including a Neurologist, Pulmonary Specialist, Speech Therapist, Nutritionist, Occupational and Physiotherapist, Psycho Therapist, and a primary physician to prescribe medicines. Additionally, giving daily care to an ALS patient is a full time job, and most patients either take help from a nurse, an attendant or helping staff, and sometimes both of them. This financially drains the family.
To summarize, please find below our suggestions on steps the govt. can take in partnership with the community of patients to help tackle this ghastly disease and provide possible support to those in need. We request you to consider:
- Establish ALS clinics and Genetic testing centres – Diagnosing and managing ALS requires a multi-disciplinary team of doctors and experts. Presently, this is rarely possible at any leading medical institution or hospital in India, which led to delays in diagnosis by months. In the US, there are many ALS dedicated centers which provides all services under one roof. We request you to consider opening these centers, potentially in at least the major cities of the country. Also, since genetic testing is key to diagnosis, management and prognosis determination, we request that these centers be equipped for state of the art genetic testing.
- Govt initiative to fund ALS research in India - a panel of experienced select team of doctors, scientists and researchers can be formed on the subject to find the cause and cure of this disease. We as Indians have outstanding scientist, doctors, researches, we are very hopeful if funds are there,ALS cure can come from India.
- Inclusion of ALS in rare & incurable diseases category and disability - there are national policies for treatment of rare diseases in India which aide in various accommodative practices, including financial help. We urge you to help include ALS also in this list. Secondly, confirmed diagnosis of ALS should be sufficient to prove disability. The patient and their family should not be required to run pillar to post for a disability certificate.
- Special grant/subsidized rate of medical supplies and equipment - ALS patients can lead a happy life for many more years if they are provided with the right equipment and resources in time. Medical equipment like suction machine, oxygen concentrators, respiratory support in the form of BiPaP machines and ventilators, recliner bed, power wheelchair, eye tracker for communication along with medical supplies like tracheostomy tube, catheters, PEG tubes, ventilator circuits, nebulizers, BP machine, air bed etc. can go a long way in ensuring patient health and longevity. At present no medical supplies are reimbursable or subsidized under any govt schemes (like CGHS etc) in India, and equipment just to the level of a BiPAP machine is provided, that too rarely, after a year-long process full of paperwork and formalities. In fact, many countries in the world provide grant for two ventilators (one primary and another backup) and various medical supplies for ALS patients, while in India we lack even the bare minimums.
- Medicines under trial and inclusion in Trials– Since there’s a lot of active research on the disease in the US and UK, many patients from India stay devoid of any opportunity to participate.. This is both a loss to the individual and our country, since any regional factors contributing to the disease will never be discovered. The govt. is best positioned to form alliances and partnerships via our institutions like the AIIMS and PGIMER to facilitate participation from patients in India to these trials across the globe. Also provide gateway to easy access to medicines under trials in other countries to India.
- ALS patient database – Current number of patients suffering from the disease will be hard to determine. Such a registry helps both the patients and the Govt. find and fund programs and support respectively, much like it is mandated to report Tuberculosis. This will also help the Govt. assess statistics and formulate if we as a nation are at the risk of a mass suffering in future due to any environmental factors and prepare to respond.
- Awareness – There is currently a severe lack of awareness amongst the population and even the medical fraternity on the disease. That results in many sub-optimal experiences for the patients and their families. The current Govt. of India has been successful in raising awareness on important issues like Swachh Bharat and Incredible India. We request some creative investment from the Govt. on ALS as well. Creating an “ALS care and support” body/association (like our informal group) and formalizing it will provide day-to-day support for both patients and their families.
- Encourage and influence pharma companies to do ALS research in India - Given the sizable ALS population in India, attract major pharma companies who intend to ALS research but face constraints due to lack of patient data in other countries.
- Income Tax Exemption - At present current 1.25 lac of exemption for critical illness is not appropriate for patients living on ventilator support at home. For comparison, the cost of ICU treatment which is where these patients would be if admitted to hospital is over INR 20K per day, which amounts to over 73 lacs per year! The govt. Should provide at least the maximum possible tax exemption across brackets, if not commensurate to the hospital costs.
- Employment benefit - There should be equivalent policy of on duty paid leaves for patients and their family caregivers to maintain quality of life as much as possible. In other nations like the US, there is a concept of Family Medical Leave which covers the full salary of the family member for upto a 1 year period.
- Home-Care/Nursing: Despite multi disciplinary care needed, MND/ALS patients stays at home for most of time. Home-Care Coverage for PALS should be specifically considered for continuous maintenance of the PALS health. As hospital stay for indefinite period may cost Govt huge chunk of money and limits the resources. Govt may consider opening up of nursing employment scheme/department for home care specially and depute the staff for the needful patients with standard charges, as otherwise current way of charging by private hospitals and nursing agencies mushrooming around the countries is well beyond the limits. This initiative will bring standardization in this field.To motivate the the Nurses involved in ALS care(or home care of patients) to select home care job, Govt may consider some special Scheme which ensures the kind of 'home care' job gets required acceptance in the medical fraternity.
- Health Insurance coverage - Insurance companies in India bail out on most of the equipment needs for ALS patients, much like the govt. Aided programs. Wide variety of equipments, various regular medical procedures, and few surgical interventions are required during ALS journey. There is a very high need to include all possible items in insurance coverage. The Health Insurance Coverage should be covered for the following categories for the Critical Care Illness/ ALS/MND patients:
- In-Patient Coverage : 'In-Patient Coverage' which means hospitalization which may be for more than 1 day and onwards. This coverage includes hospitalization, medication, general physician and other specialists attending to the patient, Surgeries, Equipments and other accessories provided to the PALS by the hospital from the time of admission of the PALS till discharge from the hospital.
- Out-Patient Coverage : 'Out-Patient Coverage' which is when the PALS’s has to visit the hospital for a brief period, may range from a general Check-up, Follow-up visit with the consulting Doctor/Specialist, or a visit to the hospital requiring changing of Tracheostomy Tube or Changing of PEG Tube etc. (which has to be executed by a professional doctor/surgeon) or any other complications with regard to his/her health which may be for a few hours to a day but does not require hospitalization for more than 24 hours (the insurance coverage policy wordings call it DAY TREATMENT). Any equipment, accessories used for the PALS’s disease during the visit to the hospital shall be covered under the Out-Patient Coverage.
- Transportation of the PALS : Coverage for transportation of PALS to the hospital and back whether short term (from few hours to a day, including waiting period at the hospital). When the PALS is on ventilator, it is mandatory to hire a Cardiac Ambulance which includes a qualified doctor, attendant, ventilator, oxygen cylinder etc. The rates for these cardiac Ambulances is higher than the normal ambulances.
- Home-Care/Nursing support : PALS spent most of their journey at home. There should be some part of coverage for nursing care at home distributed between insurance and self pay(50:50). Considering that the Motor Neuron Disease/ALS does not have any definite period, the coverage should not be limited to any no. of days/months.
- Equipments, consumables related to the disease : All equipments required related to the PALS’s illness to make his/her life more comfortable, recurring purchasing of consumables for maintenance of the good health of the PALS, should be covered without any limitations of no. of days/months.
- Medication : Since the Motor Neuron Disease/ALS does not have a definite period and requires long term medications for the maintenance of the good health of the PALS, should be covered without any limitations of no. of days/months.
Please refer to following few website/links build by caregivers in India, for ALS India community. Owing to the lack of above mentioned facilities, these are the straws holding the community together presently.
- www.alslifemanagement.weebly.com
- www.mndIndia.org
- ALS/MND India facebook group- www.facebook.com/groups/42158708100/
We will be highly grateful for your attention to this matter and look forward to your response.
Thanks and regards,
All ALS care and Support India Community members
[email protected]
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Dressing Home Vent care management (equipments, procedures and regular supplies) Feed preparation and PEG feeding
Ventilator Shout Out!!! ICU -Build safe ICUs, save lives. Open letter to Indian Government on ALS C & S group demands
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