About the Author
Sudha Sreejesh is a Dietitian, Diabetes Educator & Insulin Pump Trainer working at Endodiab Centre, Perinthalmanna. She is also an Advisory board member of Kerala Type 1 Diabetes Welfare Society.
We, Type 1 Diabetes Welfare Society (T1DWS), Kerala Chapter was formed in the year 2018 (Reg No.: KKD/CA/823/2018) to study, analyze, arrange essential amenities, and bring awareness in the public about the difficulties faced by them. In our state itself more than 5000 children suffer from this disease.
Type 1 Diabetes is a serious permanent medical condition, in which, due to pancreatic failure, the body fails to produce insulin or produce very little insulin. Because of the non-production of insulin, the glucose doesn’t move into the cells and instead gets built up in the blood, which is generally referred to as ‘hyperglycemia’ or high sugar level. Hence, patients with such insulin deficiency are dependent upon external sources of insulin through injections throughout their life on a daily basis and the said use of external sources of insulin, often results in another medical condition, referred to as ‘hypoglycemia’ in which the blood sugar levels are too low”.
If the amount of insulin injected doesn’t match the exact amount the body needs, the children could end up with too much insulin in their system which leads to low blood sugar. Because of the pancreatic failure, the pancreas cannot “shut off” insulin production very quickly, which results in lower sugar levels. Hypoglycemia-a usual side effect of treatment with blood sugar lowering medications like insulin injections and generally happens in the event of any unplanned physical activity or eating meals later than usual etc.
In children with Type 1 diabetes, the sugar levels in the blood are not managed on their own and the sugar levels could be highly fluctuating depending upon various factors like diet, physical activity, human mood, etc. Children suffering from Type 1 diabetes need continuous monitoring of their sugar level round the clock and they literally live on insulin injections and it is an incurable medical condition. They also need to carry Glucometer and Insulin pens with them.
In the absence of timely intervention, the children can collapse, and especially when they are anxious or tense, the sugar levels can fluctuate in an alarming proportion. In many cases, when the sugar level builds up in the blood, the patient feels to urinate very often and also gets dehydrated. It’s a chronic and potentially life-threatening condition characterized by the body losing its ability to produce insulin. It is a complex, expensive, and exhausting disorder for the child and the parent, and ongoing uninterrupted care is required to be provided to such children and adolescents.
The pain and suffering of children with Type 1 diabetes and their parents are extremely sympathetic and they have to be on vigil 24 hours taking note of the kind and quantity of the diet which needs to be given based on the reading of the glucose level, the activities of the child, their mood fluctuation, etc.
Type 1 diabetes, once affected in children, is susceptible to long-term treatment process with fear in mind as it accompanies various difficult medical situations and complications thereto. As this disease can be affected in children and therefore their parents are also dragged into these sufferings along with their treating doctors and medical assistants. Never has a day passed since his/her little body hasn’t had multiple injections or finger pokes. He/she had an average of five shots a day at the time and about 6 to 10 finger pokes. The monthly cost of insulin and glucometer strips is around Rs. 10,000 – 15,000 /-.This is alarming as more than 75% of our children come from poor socioeconomic status.
However, due to a lack of proper health care facilities and a lack of a national registry exclusively for T1Ds, children in our country are facing a late diagnosis and even death. Considering the level of poverty in the country, blood test strips and continuous glucose monitors (CGMS) should be subsidized. Unfortunately, that is not the case. People with T1D are rationing them, which makes diabetes management a challenging affair. Plus high blood sugar levels and/or ketones hinder the ability to perform “normal” day-to-day activities.
From February 2019 to February 2022, within a period of three years after we started this welfare society for type one diabetic children, a total of 900 children with type 1 diabetes from below poverty level families were given monthly diabetic kits worth Rs 3,000 including a world-class Glucometer, its strips, Ultra BD pen Needles, and insulin every month and still, it continues. The SADC program in all districts was effective and useful by finding sponsors and ensuring that at least Rs 1500 per month is deposited in the bank accounts of underprivileged type one diabetic children as partial support for their education, healthy diabetic food, and treatment. Around 57 children from different districts are benefiting through the SADC scheme. We could use this program to cater to the different needs of the patients effectively. We could reach out to more patients easily through this program and also bring more awareness to society that type 1 Diabetes need not to hide and be scared. We could pass the information that there is life outside waiting for them. We can’t repair the beta cells, but we can at least help the type 1 diabetic kids.
When we heard the heartbreaking death of a 14 years old type one diabetic patient’s death due to lack of unawareness and regular checkups and proper treatment, we committed ourselves to take an oath that no more incidents like this happens in our type one diabetic family. The result of this was that is we were able outreach with awareness Programmes with medical checkups and various routine lab tests. These programs were done in 14 districts all-over Kerala.
Our future plans are as follows:
Declaring a disability as Type 1 diabetes can help these children cope with the struggles in their daily lives. Most countries treat Type 1 diabetes as a disability and provide special assistance to these children. The right to disability was expanded in 2016 to include thalassemia, hemophilia, dwarf and sickle cell disease that were not traditionally considered a disability.
Someone with T1D cannot live without insulin, but medical insurance in India does not cover it, and not every type of insulin is subsidized. So for those with T1D and financial struggles, there are the worries about the price of life-giving insulin and medical supplies. The sad part, however, is that T1D is not considered a disability under this Act, even though the current problems faced by people with T1D in India do “hinder their full and effective participation in society equally with others”.
More than 5000 affected Type 1 diabetes children are prevailing in our state of Kerala. Out of which 1700 has been registered under MITTAYI project, an initiative of the State Government. But the same project is eligible for the age group falling under 18. Unfortunately in every district of Kerala, there are approximately 20 + patients who are falling above 18 and belong to Poor family. The expenses to be incurred by such a patient will be around Rs.10,000- 15,000 monthly towards purchase of medicine, Sugar Strips, Needles and periodic Lab Test. Most of this group as they have just entered into the youth after their studies, will be looking for some kind of employment. The above amount will be a heavy burden to them as well as to their parents. Our talk with the Government machinery are still going on to extend the facilities given under the MITTAYI project to the higher age groups until they are in a good financial position.
The same MITTAYI Project is now operational and executed from 6 medical colleges across the state. We wish our talks with the government authorities will be fruitful in spreading the same facilities to the taluk level and then to the panchayat level also in the immediate future.
Urging Both Central Government and State Government to include type one diabetic children in disability category and all treatment free of cost.
Disabling Type 1 diabetes will help efforts to ensure universal access to insulin and sugar monitors for children with diabetes and to provide a conducive environment for school and home.
Every type 1 kid needs to test Average Quarterly Blood Glucose level (HbA1c) which is expensive. They need to also monitor their other vital organs like eyes, kidneys, liver functions & heart by periodically visiting their respective doctors. These diabetes children are at times taken by unexpected ups and downs of blood sugar during which they feel blackouts and fatigues and unconsciousness.
We wish to spread more awareness programs to more clusters and schools also. We wish to spread awareness to every needy patient through KUDAMBASREE units which are actively available in the Panchayat level. Through them, different schemes are being implemented easily by the different departments. Our aim and purpose can easily be reached to grass root level through the above units effectively making available, all the diabetic requirements.
We are planning to coordinate with all PHC centers in the urban and rural areas so as to make things easily available and effectively to all the deserving ones. Our awareness programs can also be conducted in these PHCs so that the parents along with their affected children can be brought to the venue without much difficulty.
At present, we are issuing CONTOUR Glucometers to the needy across our state. We are inviting more companies and public to come forward to extend their physical, mental and financial helps to bring more awareness and providing facilities to the T1 diabetes.
When we achieve the above goals which we are determined to achieve in a short period…..we then like to start counseling centers with the available resources like PHC’s and KUDAMBASREE which will help the patients and parents to have a good standard of treatment and continue in their life in a better manner.
When we have set up this platform, we can have annual cultural programs to entertain and publish success stories of their Type 1 diabetes treatment. This will enable others to follow their path and be a good example to the future members in the T1d society.
We can easily bring new technology and innovations to the group when our network has reached to every look and corner of the society. We can bring specialist doctors like Nephrologist, Ophthalmologist, Gastroenterologist who can come and speak about so many ways to improve and tackle different situations and complications.
A diabetic whether it is type 1 or type 2, need to make sure he is adequately taking nutrients , minerals and antioxidants so as to have a good quality of life. The need of a dietitian is inevitable in the society….effective counseling and awareness of the above necessities can be brought by the presence of one or more dietitians. We plan to bring in more professional staff into our network so as to cater these needs.
We are an organization to cater different infrastructure and services to the Type 1 kids across Kerala through government missionaries. Such as district Hospitals, ASHA workers, Kudumbasree units etc… We would like to better the services and infrastructure to these kids and to address certain problems and bring your kind attention certain problems they are facing even today.
