A long but successful journey of Kerala’s blood disorder patients

Courtesy by: twocircles.net

They traveled three thousand kms by train taking three days and two nights to reach NewDelhi, the capital city of India. One of the main motivations behind this journey was 4th International Conference on Thalassemia which took place on 31st October and 1st November 2009 at Hotel Intercontinental Eros New Delhi. Actually they came to New Delhi not for attending the conference. They couldn’t speak or understand English or Hindi, the national language of the country. Most members of them were Thalassemia afflicted patients and their parents. Some were other blood disorder patients like Sickle cell anemia, Hemophilia, Applastic anemia and Leukemia.

Kerala is a small state with 3crores of population in utmost southern part of India. Kerala is not only a role model state in health services in India but also a complete literacy state in the nation. In the tourism map it is known as God’s own country. In Kerala near about fifty percent of population belong to Hindu religion community. Above 20% are Christians and above 25% are Muslims. The communist ideology is ruling this small state in alternative five years term getting elected by the people for last 25 years. Rest of the period after Independence has been ruled by the Indian National Congress. The communal fabrication with social amity and the peaceful social life is the salient feature of this small state. No space here for communal violence or hatred in the name of religion, caste or creed.

One of the major achievements in health sector is the low child mortality rate. But this phenomenon rises the morbidity rate of children same as the developed countries. But unlike the developed countries Kerala has no facilities to prevent or to avoid this like morbidity rate by using new technologies like antenatal diagnosis. These pathetic situation causes to rise various kinds of hereditary disorder disease like Thalassemia, Sickle cell anemia, Hemophilia and different kinds of birth defects. In Wayanad, a hill district of Tribal people in north Kerala alone, about five thousand persons are suffering from sickle cell disease among the tribal. Twenty thousand carriers among the tribal are the major threat in the health sector in the future years in hereditary disease.

Even though the prevalence of blood disorder patients is very high in north Kerala especially in Malabar region no sufficient facilities are available in hematology check up and no service of hematologist in this state.

Blood Patients’ Protection Council (BPPC) is an organization of acutely blood disorder patients like Thalassemia, Hemophilia, Leukemia, Sickle cell anemia and their parents have been fighting for the better treatment, life saving drugs and vital right of these patients for the past fifteen years. For achieving the birth right of patients many agitations were organized like road blockade including a state Secretariat march by traveling 800 km by BPPC. But the Govt. took a stubborn position against the patient’s demand. That was the one reason compelling the patients to travel to New Delhi by declaring a parliament march.

They raised slogans demanding better treatment and life saving drugs for acutely ill patients and demonstrated towards the Indian parliament on 29th October 2009. The patients raised 10 point demands including the set up of an antenatal screening facilities at Calicut medical college hospital where depends 1.5 crore people for better treatment in Malabar area and some part of Karnataka and Tamil Nadu state. Near about 100 blood disorder patients and their parents took part in the parliament march. Delhi police blocked their march with barricade at Jantar Mantar, New Delhi. The march was organised by BPPC under the leadership of Kareem Karassery, the General Convener of BPPC.

Tom Vadakkan, Secretary, Indian National Congress, the ruling party of India inaugurated the march. After the march, the participants rushed to All India Congress Committee Office New Delhi. Patients and their parents expressed their grievances and the miseries due to lack of expert treatment, life saving drugs and other ill feelings before the eminent leaders and office bearers of the ruling party (AICC) of India.

Dr. Shakheel Ahmed spokesperson of the ruling party addressed an elaborate press conference with the blood disorder patients and their parents from Kerala at AICC office. AICC Secretary Tom Vadakkan was also present in the crowded press conference. Dr. Shakheel Ahmad assured the acutely ill children and their parents from Kerala that the Govt. of India and the health and family welfare department will take urgent step to solve the 10 points demand raised by BPPC Kerala. They would bring the matter before the president of the Congress party Sonia Gandhi, central health Minister Gulam Nabi Azad and AICC gen. secretary Rahul Gandhi immediately. Only after achieving the assurance from the ruling party head quarters the patients and the parents returned from there.

The following day patients visited all monumental and significant tourism places in Delhi with their parents. They also visited Indian Parliament. Some office bearers of BPPC were delegates of the International Conference on Thalassemia at Hotel Intercontinental Eros. Due to the medium of conference and instructions was English/Hindi rest of the members of this team couldn’t register or attend the conference and same day they went to Agra and visited the Taj Mahal, one of the seven wonders of the world and other world heritage monuments like Agra Fort and well known pilgrimage center like Madura Temple etc. This journey was very pleasant for the children who are suffering with fatal diseases, especially for school going students. Parents also enjoyed this trip as great relief and relax from their painful fate of prolonged life.

On 2nd October 2009 all patients and their parents were attended in the Thalassemia clinic at Sir Gangaram hospital which was constituted by the part of International conference on Thalassemia for the registered patients. But most of our patients or their parents were not registered in the conference. Yet, Dr. V.K. Khanna, Head, Department of Hematology, Sir Gangaram hospital agreed to check up all patients even in the busy day.

The patients got a thorough check up and well medical advice from the clinic. Ms. Shoba Tuli, vice president of Thalassemia International federation helped for facilitating the check-up. Dr. P.M. Kutty, President, Malabar THAS Society, Dr. V.T. Ajith Kumar treasurer of the society also helped to make this check up a reality. The hospital authority served good delicious snacks to the patients. They returned from the hospital after the check up was over with the immense gratitude to the Gangaram hospital especially to Dr. V.K. Khanna. Many Malayalam Language dailies published this news of events with the group photograph of patients with Dr Khanna.

The following day all patients and their parents returned from New Delhi after a week-long tremendous mission and good feelings with significant knowledge to their home state by train. We reached on 5th October without any inconvenience. The journey was good with songs, jokes and dance of children.

When we reached Calicut a letter from Union Health Minister Gulam Nabi Azad reached to Calicut. He said in his letter that he has examined the matter and would get back to us shortly. In another letter sent by the secretary of All India Congress Committee (AICC) Rama Chandra Kundiya, MP, mentioned that Sonia Gandhi, President, AICC, forwarded the application submitted by BPPC to the health minister.

Along with these responses a breakthrough occurred in the health field of Kerala.

Ms. P.K. Sreemathi, health minister of Kerala declared that all acutely ill patients below eighteen years of age will get free treatment from Jan 2010 without considering their income. Besides, central health minister informed the local MP M.K. Ragavan that he sanctioned Rs 3 crore for the development of oncology department at MCH, Kozhikkode with immediate effect. The annual central budget allocated a considerable amount for the development of public health sector.

Blood disorder patients and their parents believe that the multi-purpose journey to New Delhi was not in vain. They are expecting more from the Central and State Government.

(Kareem Karassery is General Convener, Blood Patients’ Protection Council, Malabar Zone, Kerala, India, and can be contacted on 9447019182)

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