Fighting for Rights of Type 1 Diabetic Children- Story of a Father from Kerala

The Kerala High Court has issued notice to both the Central Government and the state last week, seeking response on a Public Interest Litigation (PIL) which was filed by Shihabudheen, a parent of a child who has Type 1 diabetes - to consider the Type 1 Diabetes in the disability list under the Rights of Person with Disabilities (RPWD) Act 2016.

Shihabudheen, who lives in Thiruvananthapuram, is a social worker and the Vice President of the 'Parents Association for the Welfare of Type 1 Diabetic Children'

As an interim relief, the petition prayed before the court to direct the central government to issue necessary notification for including Type 1 Diabetes Mellitus (T1DM), generally called Juvenile Diabetes, as a disability in the list of Specified disabilities under the Rights of Persons with Disabilities Act 2016 (RPWD Act) for all practical purposes.

The petition also has sought to include T1DM in the list of rare diseases under National Policy for Treatment of Rare Diseases (NPRTD) and to allocate required funds for providing basic treatment facilities and other welfare measures for T1DM patients.

The petition also prays to take appropriate steps for setting up a national registry of T1DM patients and to provide special quota for admission to students with T1DM for secondary and higher education including vocational training and other institutes coming under the Central and State Governments orother autonomous bodies.

"India is a signatory to the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD). The very founding principles of the UNCRPD is non-discrimination and full and effective participation and inclusion in society."

"By leaving out T1DM from the list of Specified Disabilities, while including many other medical conditions like Thalassemia, Hemophilia, Sickle Cell disease, etc in the list of specified disabilities, T1DM patients stand discriminated against. There is a clear violation of the fundamental rights guaranteed under Article 14 of the Constitution", said Advocate Shameem Ahmed, Counsel of the petitioner to Madhyamam.

"The list of Specified disabilities under the RPWD Act includes about 21 medical/physical conditions but does not include Type 1 diabetes. The exclusion of Type 1 diabetes from the list of specified disabilities fails the test of reasonableness as there is no logical basis for such exclusion when T1DM is a more serious medical condition with no cure and affecting the day-to-day normal life activities of the patients", Ahmed added.

Type 1 Diabetes Mellitus (T1DM) or Juvenile Diabetes

Type 1 Diabetes is a serious permanent medical condition, in which, due to the pancreatic failure, the body fails to produce insulin or produces very little insulinas a result of which such children affected by the condition need to be on external insulin injection throughout their life.

In children with Type 1 diabetes, the sugar levels in the blood are not managed on its own and the sugar levels could be highly fluctuating depending upon various factors like the diet, physical activity, human mood, etc.

Children suffering from Type 1 diabetes need continuous monitoring of their sugar level 24 x 7 and they literally live on the insulin injections. It is an incurable medical condition. They have to undergo multiple daily and frequent insulin injections, daily blood glucose monitoring, prevention, and handling of acute complications, screening for and managing chronic complications and require psychological support.

The personal struggle of Shihab

Shihab is actively involved in organizing awareness camps along with the parents and children who are suffering from T1DM in association with health-care professionals specialized in care of diabetics.

He has been regularly making representations before various authorities for the last three years after his son was diagnosed with T1DM in 2017.

"I hope to get a positive result through the court's intervention", reacted Shihab to Madhyamam.

"My five-year-old son was diagnosed with T1DM at the age of two and a half years,"

"The pain and suffering of children with T1DM and their parents are extremely sympathetic. We have to be on vigil 24 hours taking note of the typeand 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," added Shihab.

"Treatment cost for a child diagnosed with T1DM and who are on insulin pen is something ordinary parents cannot afford: the cost of insulin pen alone ranges from INR 4000 to INR 10,000." he said

While Insulin pens and glucometres are the generally support treatment accessories used by the Type 1 diabetes patients, and in complicated cases of Type 1 diabetes found in children, Insulin Pumps are the most recommended form of support. However, use of insulin pumps are expensive.

"The canula and infusion set of 10 units to be used in these insulin pen costs about INR 9,000 and the site of infusion needs to be changed once in 3 days; at least 30 units are required on an average and the cost works out to be INR 18,000 in a month,' Shihab point outs.

"The sensor needs to be replaced at least once in six days and the cost works out to INR 3,250 to 3,500 in a month. One cartridge of 100 units insulin cost about INR 600 and on average, the children require 3 to 4 cartridges in a month. Thus, the cost of using insulin pump by a child in a month works out to more than INR 20,000' he further added.

The above words of Shihab show that apart from the mental and physical suffering associated with the treatment of Type1 diabetes, there is a huge financial burden on the parents of children diagnosed with it, unlike many other disabilities.

While running from pillar to post across many government institutions, in the month of October 2019, Shihab came to know that he has laryngeal cancers that form on the vocal cords (glottis) often causing hoarsenessor a change in the voice.

As the disease was found out at an early stage, he sought treatment in Regional Cancer Center (RCC), Thiruvanathapuram.

This slowed the pace of his struggle for these children affected by T1DM.

While he was in his first phase of treatment, in the month of March this year, he went to the offices of Kerala State Commission for Protection of Child Rights (KSCPCR) and Department of General Education, State of Kerala directly, seeking permission for candidates suffering from Type 1 diabetes to carry snacks/fruits/ juices/sugar candies/ insulin pens/ insulin pumps or such similar articles during examination time.

Based on the order of the State Child Rights Commission, the order from General Education Department was to deposit insulin pumps or such similar articles with the invigilators in the exam hall and give it to the candidates when required.

But the authorities did not realise that students affected by T1DM need insulin pumps 24/7 with them. Shihab again went to the Child Rights commission office to make corrections in the order.

When the then Chairman of KSCPCR, P Suresh came to know that Shihab was under treatment for cancer, he himself took the quick initiative to get a favourable order for these children, told Shihab to Madhyamam.

There are many others who gives active support for organizing awareness for the parents and children who are suffering from T1DM, he says.

The two name he specifically mentioned was of Dr. Riyas and Dr. Sheeja, who are working at Government Medical College and KIMS Hospital (both situated at Thiruvananthapuram) respectively.

"The support of these two doctors gave me enough courage to fight for the rights of T1DM affected persons", Shihab remembers with gratitude.

Shihab is not alone in this struggle.

Shihab who has been working as an automobile technician is not alone in this struggle. His wife Bushra Shihab stands by with him at this most desperate time.

She has completed her M. Phil and was working as an Assistant Lecturer in a private college at Trivandrum.

But when they realized that their two and half year son has been diagnosed with T1DM, she had to quit the job to look after their son. She helps her husband in writing letters to different ministries and government departments.

Last year, Mrs. Shihab gave a representation to the prime minister to request all state governments to give preference to educated and qualified mothers of such children with T1DM for contract-job appointments in Central and State Government organizations.

Mrs. Shihab hopes that if such a preference is implemented, their income can be used to at least partially bear the living expenses and the costly medical treatment of their children.

In August 2019, Mrs. Shihab got a reply from the Ministry of Health and Family Welfare (Child Health Division), saying that "the representation she had submitted has been forwarded to various departments for necessary action".

Through the joint efforts of the couple, some positive measures were taken by KSCPCR and the General Education Department, State of Kerala.

Following their relentless follow-up and representations before these institutions, on 07thMarch 2020, an order was passed by Kerala General Education Department allowing candidates suffering from Type 1 diabetes to carry snacks, insulin pumps, or such similar articles during examination time without requiring them to deposit with the invigilators.

Data on State Interventions for T1DM affected children

As per the data published in various articles in leading medical journals, it is estimated that India has about one lakh (1,00,000) children suffering from Type 1 diabetes, and India accounts for 20% of the total number of Type 1 diabetes cases in the world.

Realizing the gravity of the situation, the State of Kerala, through the Kerala Social Security Mission, under Social Justice Department, with technical assistance from Health & Family Welfare Department has recently initiated a social support project for children and adolescents with T1DM named 'MITTAYI' and has a portal by name www.mittayi.org

The objective of the project is to provide comprehensive care and support to juvenile diabetics so that their blood sugar levels are managed effectively without curbing sweets completely.

Though the portal has a registration facility, due to lack of awareness it has not been able to gather the details of the exact number of Type 1 diabetes patients in the state of Kerala.

Due to the social stigma attached to being branded as a lifelong patient, parents of many Type 1 diabetes children, especially female children, are not registered in the portal under the Mittayi scheme, pointed out Shihab.

According to Shihab's estimate, there are about 1500 children registered under the Mittayi Scheme, but the actual number of Type 1 diabetes children in the State of Kerala are three or four times this number.

Even though the State of Kerala had launched the Mittayi Scheme, due to budgetary constraints, there is a very strict scrutiny process and it is difficult for all children with Type 1 diabetes patients to get the benefits under the said scheme.

There are only about 4 mittayi clinics in the State of Kerala, which means children with T1DM residing in one district have to travel to the nearby districts to avail themselves of the healthcare support required for them.

When it comes to the case of the northern part of Kerala, commonly known as Malabar, the situation becomes worse. There is only one Mittayi clinic at Calicut Medical College, which is the only government medical college relied upon by the patients from five districts that form the Malabar region.

Even the insulin pens, cartridges, and strips provided through the Mittayi clinics are very inadequate compared to the actual requirement of the patient, and many times, the parents have to depend on the private clinics/pharmacies for buying insulin cartridges, syringes and strips, which avery expensive proposition.

The insulin pump being very expensive, it is not easy to get it from Mittayi clinics, says Shihab, whose son Ihsaunul Haque was one among the very few patients in the state to obtain the insulin pump through the Mittayi project - that too after running earth an dheavenand based on the recommendations of the treating doctor.

But when it comes to persons above the age of 18, no specific rules or projects are existing in the country so far. This makes their life unbearable and they have to struggle both in their personal life and professional career.

The stand of the Central government on T1DM patients

Based on the directives of UNCRPD, 2008 "The Rights of Persons with Disabilities Bill, 2014" was introduced in RajyaSabha on 7 February 2014. It was referred to the Standing Committee on Social Justice and Empowerment on 24th of the same month, and again re-referred to the standing committee on 16 September 2014. The Standing Committee submitted its report on5 May 2015

On the coverage of various medical conditions under the list of 'Specified Disabilities', the Standing Committee had specifically raised a question as to why medical conditions like kidney failure, blood cancer, diabetes Type-I (Type-I IDDM), and several other similar ailments have not been included in the categories of disabilities as specified in the Schedule to the Bill.

After considering the reply of the ministry, the Standing Committee strongly recommended that disabilities like Type 1 diabetes should also be included in the list of specified disabilities under the RPWD Bill. But the bill was passed by the Lok Sabha on 14 December 2016 and by the Rajya Sabha on 16 December 2016 and received the President's assent on 27 December 2016.

Even though the definition of the 'person with disability' is wide enough to include any physical, mental or intellectual impairment which hinders full and effective participation in society equally with others, the list of specified disability contained in Schedule 1 is restricted to only 21 disabilities and left the rest of the disabilities from the coverage of the Act for the purpose of the benefits under the RPWD Act.

Hitherto, no positive steps were taken by the Central Government for the inclusion of the Type 1 diabetes in spite of the recommendation of the Standing Committee.

On March 2019, Madras High Court had considered a similar petition.

While hearing the plea,the Court had sought the views of the central government on various points and one of the specific points was whether Central Government had received any proposal to include Type 1 diabetes as a disability under the Schedule of including Type 1 diabetes as a disability under the schedule of Persons with Disabilities.

Now Shihab expects that Central Government will consider his plea in Kerala HC in a positive manner.

Last year, Shihab had also tried to meet and speak in person with Shashi Tharoor, Member of Parliament from Thiruvananthapuram to convey the plight of T1DM affected persons. He could not make it as Tharoor was busy with the Lok Sabha election engagements.

He tried to meet him again this year. When contacted again, Tharoor's office replied he was staying on in Delhi due to Covid 19 lockdown restrictions since March.

Shihab is waiting to meet Tharoor, as he is the MP of his native constituency, Thiruvananthapuram. He believes that if the issue is raised in Lok Sabha, the central government will take positive steps for T1DM affected persons.

He had also contacted the Thiruvananthapuram office of V Muraleedharan, Union Minister of State for External Affairs & Parliamentary Affairs. He believes if Muraleedharan could take up the issue, it would be a great help to lakhs of children afflicted with T1DM.

The determination and steadfastness of Shihab to struggle for the rights of the persons affected with T1DM,even when he is suffering from a chronic disease ie laryngeal cancer, is a role model for many.