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Thalassemia is one of the commonest single gene disorders imposing a heavy burden on families and the health sector in India and in the world. India has the largest number of children with Thalassemia major in the world - about 150 thousand. India is considered the Thalassemia capital of the world as it has over 50 million carriers, that is 4% of the Indian population. Every year, nearly 15,000 children are born in India with Thalassemia major which is characterized by the inability to produce enough red blood cells and the oxygen carrying hemoglobin. Such children are normal at birth but within 3 to 24 months, they start showing symptoms like pallor, loss of appetite, lethargy, growth retardation etc. This is a serious medical condition where the red blood cells (RBCs) are abnormal and die fast, thus leading to severe anemia. Due to this, the patient is susceptible to frequent blood transfusions, every 2-4 weeks throughout their lives, in order to maintain normal growth and quality of life. Therefore, the mainstay of treatment is a regimen of regular blood transfusions. Thus it is a transfusion dependent disorder and places a great burden on healthcare services.
In India, the cost of transfusing and chelating a 30 kg body weight child for one year is estimated at USD 5000. With an estimated birth of 15,000 children with Thalassemia Major every year, and survival for 50 years, the cost of managing 500,000 children (15,000 x 50) works out to USD 3,750 million, and USD 37.50 million even if only 1% were to survive to 50 years of age.
Thalassemia Carriers cannot be recognized clinically but only by performing special blood tests. Where both mother and father are 'carriers', there is a chance that their children may inherit the abnormal gene from both parents and thus suffer from a severe Thalassemia syndrome or a Sickle Cell syndrome or may be normal without any abnormal gene or carriers like their parents. So, Thalassemia can be prevented through diagnosis & awareness.
To address above needs, the project has been planned with following objectives:
• Creating facility to carry out Thalassemia Carrier / Screening Test for diagnosing Thalassemia minors.
• Spreading Awareness about prevention of Thalassemia so that potetial birth of Thalassemia majors could be avoided.
GLOBAL GRANT PROPOSAL
SETTING UP "THALASSEMIA SCREENING CENTER" AT GURGAON
Project in Association with National Thalassemia Welfare Society of India (NTWS)
The Rotary Club of Gurgaon Qutab Enclave has been actively involved in various innovative projects to improve the lives of under privileged, physically challenged and un affording poor patients seeking support in the community.
The Club has identified an important project to provide EQUIPMENTS in activating a Thalassemia Screening Centre at Gurgaon, India under the banner of "National Thalassemia Welfare Society" to prevent suffering of many innocent potential children from Thalassemia. The noble cause of this project is to improve access to screening and timely diagnosis of Thalassemia carriers thereby reducing the number of potential birth of Thalassemia Children and prevent suffering caused by this hereditary disease prevalent in India.
BACK GROUND AND NEED ANALYSIS
Thalassemia is a serious inherited blood disorder. Its management requires repeated blood transfusion every 2-4 weeks and iron chelation throughout life. In India 4% healthy looking persons are Thalassemia carriers & around 15,000 new "Thalassemia Major" are born in our country, whose survival depend upon lifelong repeated blood transfusions. The disease can be prevented by generating awareness, prenatal screening and genetic counseling so that Major Thalassemia do not give birth to a child. Independent studies by medical institutions have been conducted and it was found that in target area of operation of this project, 7% population is Thalassemia carrier.
One Thalassemic child is being added every 45 minutes in our country. A Thalassemic child on an average requires 30 units of blood every year. The average cost per patient is USD 5000 per year which is beyond the pocket of even a middle class family in India. The cost is bound to escalate further with inflation.
Prevention of the birth of even 1 thalassemia major child will result in saving USD 250,000 & 1000 units of blood that too if life expectancy is 50 yrs, while many Thalassemics in India are now touching 50 and World over life expectancy has crossed 60 years of age.
PROFILE OF THE IDENTIFIED ELIGIBLE PARTNER FOR GRANT CO-MANAGEMENT
NTWS-National Thalassemia Welfare Society, formed by patients, parents, doctors and well-wishers is dedicated for the cause of Thalassemia since 1991. It was formed with the twin objective of caring the affected people and controlling the disease in future generation. To fulfill the second objective they have planned to create awareness in schools/colleges and screen the students. This strategy has been found very effective in Cyprus, Sardinia, Greece and Italy, where the incidence is very high
Current Infrastructure & activities of the NTWS: The Gurgaon Government has allotted building (built up area around 4000 sq ft. full plot measuring around 1.25 acre) to run a Dispensary at C 2 Block, Palam Vihar, Gurgaon, India in April 2008 to help the poor and needy patients. NTWS have been organizing bi-weekly camps to the doorsteps of village population and providing them free medicines and consultancy. NTWS also developed physiotherapy, dental and homeopathic departments with visiting Consultants from other specialties, as needed.
NTWS strongly wants to develop Thalassemia screening facility in the dispensary to provide free Thalassemia screening to poor & needy young population. Even those who can pay will be highly subsidized to motivate them to screen at early age. Before screening, a lot of awareness will be generated through lectures, posters, hoardings & brochures. NTWS have produced two films on Thalassemia awareness "CHETNA" & "JAGRATI" in association with Directorate of Health Services, Govt. of Delhi. Viewing of these films before and during the camps will further help us in motivating the young people to come forward for screening. Blood samples will be taken by trained technicians with disposable syringes and needles. Reports with interpretation and advice will be given by expert counselors. Doctors will also be available for further clarification and advice.
The complete project cost is USD 85,500. In first phase 5000 young persons are targeted for screening.
Infrastructure developed for this project will be further utilized to expand the screening to whole of Gurgaon and later to all of Haryana State. The vision is to make Haryana State Thalassemia free in next coming years through screening of young adults before marriage/collage days. The success of this project will be replicated by other districts of Haryana and will have impact on whole of India. Awareness created by screening will also support us in motivating the young generation for voluntary blood donation which will strengthen our blood banks and save many lives who need blood.
PROJECT HIGHLIGHTS
Rotary Grant needed for setting up Thalassemia Screening Centre with "Equipment's " at the National Thalassemia Welfare Society Dispensary at Gurgaon, India
Rotary Club of Gurgaon Qutab Enclave and NTWS to conduct various camps in colleges/ societies for screening and detection of Thalassemia Carriers
Rotary Gurgaon and NTWS Building awareness about disease prevention and develop counseling centre for newly diagnosed Thalassemic individuals.
Details of National Thalassemia Welfare Society
Activities of NTWS is spearheaded by Dr J S Arora , General Secretary, National Thalassemia Welfare Society & Federation of National Thalassemics (NTWS), He is also Member Ethics Committee: IIT , Delhi ,Lady Hardinge Medical College and associated Hospitals, ITS dental College Hospital & research Centre, greater NOIDA, PFPS (Patients for patient Safety), campaign, Member PFPS Advisory Group, Founder Member: Indian Alliance of patients Groups
Founding Trustee: Genomics and Public health Foundation. NTWS is involved in awareness and treatment of Thalassemia Children.
Detail FINANCIALS (Estimated project finance statement are available with breakup of all heads)
The cost for providing the aforesaid facilities will be USD 85500 and project funds will be used to finance the equipments purchase cost and initial awareness campaign costs.Our Club contribution will be USD 14500,Host District DDF USD 10000, International Partner Club USD 23000 and International Partner District DDF 4650
PROJECT IMPLEMENTATION SCHEDULE HAS BEEN PREPARED AND IT IS ESTIMATED THAT AFTER FINANCIAL ARRANGEMENTS ARE IN PLACE, THE PROJECT TO GO IN OPERATION IN NINE MONTHS TIME.
OPERATION OF PROJECT
ROTARY Club OF GURGAON QUTAB ENCLAVE will enter into an agreement WITH NTWS to operate, manage and upkeep the equipment as per guidelines of manufacturer and over see the same by committee of Rotarians. Our members will be directly involved in awareness campaign in the community so that more and more young persons are screened and the detected Thalassemia carriers be counseled , not to produce child.
RI GLOBAL GRANT PROJECT ELIGIBILITY COMPLIANCE
The above project qualifies as per RI eligibility Guidelines:-
a. Relate to one of the Six Areas of Focus- Disease Prevention .
b. Rotarian of our Club would be actively participating in the project during the LIFE of the Project.
c. There will not be any liability to The Rotary Foundation or Rotary International beyond the funding amount of the grant.
d. All project activities will adhere to governing laws of the USA and the Host area of the grant and no harm to individuals and entities.
e. Grant will not be used for any reimbursement to club and district.
f. Will demonstrate sensitivity to host area's traditions and culture.
g. Comply with the Conflict of Interest policy for Program Participants.
h.Comply with the Rotary International policies for use of the name Rotary
i. Will include signage on or in conjunction with projects that identifies the role of the grant sponsors and The Rotary Foundation.
j. Will follow Rotary Privacy Policies.
We hope you will find the above proposal interesting and join hands to become our Global Partner in realizing this suffering avoiding Project. We shall be pleased to furnish further details as and when require.
Warm Rotary Greeting
Ram Kishan Goenka
President
Rotary Club of Gurgaon Qutab Enclave
Phone: +91 99 713 77988
mail: sitakishan@hotmail.com
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