1. National Rural Health Mission (NRHM) – 1
Title : Pilot project to set a model for district wise identification and prevention of Duchenne Muscular Dystrophy and Spinal Muscular Atrophy in 5 health unit districts of Tamil Nadu viz. Coimbatore, Tirupur, Dharapuram, Erode and Salem.
As a grassroot level initiative, our current programmes are on identification and prevention of these lethal genetic disorders in rural areas of Tamil Nadu. We carried out a pilot project from December 2011 to March 2013 entitled, “Identification and Prevention of Pediatric Neuro-muscular Disorders- viz., Duchene Muscular Dystrophy and Spinal Muscular Atrophy covering Five Health Unit Districts in Tamil Nadu” jointly funded by the National Rural Health Mission, Government of India and the Department of Public Health and Preventive Medicine, Government of Tamil Nadu. The following activities were carried out systematically for the successful completion of the project in a sequential manner.
1. Networking with District Collectors, Deputy Director of Health Services (DDHS) about the need and purpose of the project.
2. Awareness and training of all medical and paramedical personnel in the public health system
3. Door to door survey of the rural population with the specially designed forms by village health nurses
4. Scrutinisation of the filled forms at MDCRC
5. First and second level screening of suspected cases by Primary Health Centre(PHC) doctors and neurologists respectively and sample collection
6. DNA diagnosis
7. Genetic Counseling and carrier sampling
8.Carrier Diagnosis and Counseling
9. Multidisciplinary Care clinics with the help of a panel of specialist physicians to improve the quality of life.
Outcome Of The Project
In the above said project, genetic diagnosis was carried out for 585 children affected with DMD and 200 children affected with SMA. Multidisciplinary care was provided to 131 affected children. On the requests from the state and central governments, this pilot project has been expanded to 3 districts of Karur, Namakkal and Nilgiris for the year March 2013 – February 2014.
2. National Rural Health Mission (NRHM) – 2
Title : Expansion of Pilot project towards Identification and Prevention of Pediatric Neuro-Muscular disorders – viz., Duchenne Muscular Dystrophy and Spinal Muscular Atrophy covering three Districts in Tamil Nadu Networking & Introduction with District Collectors, Deputy Director Health Systems in the selected 3 Health Unit Districts, (HUD) viz., Karur, Namakkal, Nilgris of Tamil Nadu for the purpose of the project and the services offered. Training program conducted for all the field staffs including Block Medical Officers in the 3 HUDs for identification of DMD & SMA based on the questionnaires. As a part of the project, we received the list of muscular Dystrophy children from DDRO & SSA and conducted a screening camp with the help of Neurologist to collect the blood samples for Genetic analysis.
Karur & Namakkal Districts
This year being the 150th birth anniversary of Swami Vivekananda, we have commenced a student’s initiative to help the VHNs and complete the door to door survey under the NRHM-DPH- MDCRC program. Our initiative will target the student’s population. We have organized the meeting to address the Youth Red Cross, National Service Scheme, Community Social Service and National Cadet Corps Coordinators of the colleges in Karur & Namakkal district. In this meeting, we explain the roles of Academic Institutions in the project in detail and create a link between VHNs and student volunteers. VHNs will help the students geographically to complete the door to door survey.
We have trained ASHA’s for door to door survey, for 4-Blocks in Nilgiris.
The children who are identified by the survey are taken up for 1st level screening by the PHC doctors. Cases clinically suspected for DMD/BMD/SMA will further undergo 2nd level differential diagnosis by a panel of experienced neurologists and blood samples will be taken up for molecular analysis. Genetic counseling followed by carrier analysis is offered for the affected families towards the prevention. Since there is no cure, multidisciplinary care is offered to improve the quality of life for the children and effectively manage the disorder.
3. Health EVillage Project
Donato Tramuto, the Chairman and CEO of Physicians Interactive and the Founder of Health eVillages, presented two awards for healthcare programs in India and announced that Health eVillages is committed to expanding its efforts in India. The awards were made during Health 2.0 India’s “Simply Lead” conference at Bangalore’s CMR Institute of Technology, where Tramuto was also asked to provide closing remarks.
Tramuto announced two grants from Health eVillages during the conference, which focuses on rebooting and reframing leadership in India for the needs of 21st Century healthcare. The awards were presented to Dr. B.R. Lakshmi for her efforts to eradicate Duchenne Muscular Dystrophy (DMD) in the country, and to Kid Powered Media for its work on social issues faced by street, slum and working children in India.
Followed by the award Dr. B.R.Lakshmi and Tramuto came with collaboration on pilot project to create the awareness about the orphan disorders, viz Duchenne Muscular Dystrophy (DMD) and Spinal Muscular Atrophy (SMA) among the rural people through Angnwadi’s by using the technology.
Under the ICDS (Integrated Child Development Service Scheme), one trained person is allotted to a population of 1000, to bridge the gap between the person and organized healthcare, and to focus on the health and educational needs of children aged 0-6 years. This person is the Anganwadi worker. Their services also include the health and nutrition of pregnant women, nursing mothers, and adolescent girls. Today in India, about 2 million anganwadi workers are reaching out to a population of 70 million women, children and sick people, helping them become and stay healthy. Anganwadi workers are the most important and oft-ignored essential link of Indian healthcare.
In Coimbatore district, there are 14 blocks, 46 PHC (primary health centres) and 328 HSC (health sub centre). In these blocks, we have 1688 Anganwadis working under ICDS for 854489 populations in the rural places.
Usually we explain with the aid of PowerPoint presentations and videos in laptops during the trainings. In this pilot project, we used the iPads and mini projectors for training. During the short visual interaction we gave them awareness about this lethal genetic disorder and quick tips to identify the suspected cases of children with DMD/SMA related videos. This effect would further strengthen our goal to not leave any kid with DMD/SMA unidentified. The trainees were provided with the pre and post questionnaires which will help us for betterment of the project further. We successfully completed the training over all the given districted within the stipulated time period.