CFW has received a $65,000 grant from the Chiron Foundation to support a program that will attempt to raise the life expectancy of CF patients in India.
(See “Country Close-Up: India” to read more about the project). “The Chiron Foundation is an independent, nonprofit organization committed to improving lives through better health care, empowering lives through better education and enriching lives through better communities.”
This grant will enable CFW to develop the Indian CF Foundation (ICFF), strengthen the CF services provided at the All India Institute of Medical Sciences (AIIMS) New Delhi, and begin the steps to determine the incidence of CF in India. Since the occurrence of CF in India is unknown, CFW will run a protocol workshop to determine possible program sponsors in the international community.
After establishing a course of action, CFW will work with the World Health Organization and the ECFS to find funding for a multi-site Epidemiology study.
Tentative participating sites for the study include New Delhi (AIIMS, Sucheta Kriplani Hospital), Mumbai, Chennai, and Kolkata. The goal of the 3-year study is to document carrier frequency of CF in the population, and to prepare panel of common CF mutations that can be used for diagnosis and prenatal diagnosis of CF. Findings will enable India to recognize the burden of CF on their society and enable government officials and the medical community to meet the needs of the CF population.
Strengthening existing CF services and increasing the availability of trained professionals is vital to meet the demand of existing patients and new patients the study will uncover. It is imperative to fund additional staff and offer workshops at AIIMS that will educate medical professionals working in pediatric care. CFW will help coordinate government, corporate and private support to help medical facilities with such necessities as supplying medications, procuring equipment
and helping patients pay for specialized care.
Presently, ICFF consists of a small group of parents, medical professionals and local citizens. With CFW’s help, the Indian CF Foundation will provide a strong unified effort to lobby for CF care and improved conditions for patients at government levels within the Indian ministry of Health. CFW will work with
partners in India to increase the managerial, financial and advocacy skills of the ICFF. CFW will also support the development of relationships with international and local resources to expand the knowledge and treatment of CF in India. A firm establishment of the ICFF will serve to educate newly diagnosed patients while ensuring that doctors and facilities will be able to provide proper CF treatments.
Thanks to the Chiron Foundation grant, CFW will be able to make the first steps toward providing proper CF care to the Indian population. For more information on the Chiron Foundation, visit www.chiron.com/foundation.
