Capacity Building for the CF-SAT
Dr S K Kabra, Pulmonology Division, Department of Pediatrics, All India Institute of Medical Sciences, New Delhi
Cystic Fibrosis Worldwide
Project monitoring committee:
1. Christine Noke, CFW Executive Director
2. Advisors, board and staff from Cystic Fibrosis Worldwide
3. CF-SAT Board of Directors
Coordinating center: New Delhi, CF-SAT office
Tentative list of participating states:
New Delhi (AIIMS), Mumbai, Chennai, Calcutta
Aim of the Project: To Build capacity of CFW member, CF-SAT
Objective: To develop CF-SAT into an organization that continually expands its resources and programs creating a viable organization long term.
Long term objectives: To improve life expectancy and quality of life for South Asian CF Patients.
Background: Cystic fibrosis is the most common life-limiting hereditary illness in the Caucasian population with an incidence of 1 in 2,500. CF was considered to be extremely rare in the Indian population, however recent reports suggest that CF does occur in Indian populations and diagnosis is missed due to lack of awareness. The precise incidence of CF in the Indian population is unknown. The estimated prevalence in migrant populations in the UK and US vary from 1 in 10,000 to 1 in 40,000. There are no large community based studies that give a clear idea about the disease burden in India, and with the lack of this critical data, CF does not get appropriate attention by the policy makers. In order to improve awareness among medical professionals, government officials and the lay community, it is imperative to establish a CF patient association working to develop specific projects aimed at increasing awareness and improving condition for patients.
Cystic fibrosis services were started at AIIMS, New Delhi, India in 1999 with help from the International Cystic Fibrosis (Mucoviscidosis) Association. The services were developed and implemented with guidance and support from the Southampton CF Unit and Dr Gary Connett. CF-SAT was developed with the support of CFW in 2006. By-Laws and legal registration in India was established as well as a tentative strategic plan. The objective for CFW is to build capacity in India allowing India to develop its own programs to aid patients.
Currently AIIMS and the Indian CF Working Group run annual conferences to build awareness and spread knowledge in South Asia. Family workshops are run consecutively during these annual conferences. Funding has come primarily from Solvay India who is the only source of funding for CF in India at this time. A recent CF conference for families conducted by CFW included the donation of nebulizers and the spread of printed treatment/care documents.
An analysis of the situation in India has been conducted via questionnaires for both the medical and families. During our analysis it was determined that the needs were as follows:
1. A Parent patient organization needs to established (CF-SAT)
2. Information needs to be provided in Hindi for families
3. Diagnostics via sweat tests needs to be implemented (DR Kabra designed a sweat test machine that allows for affordable diagnostics. Solvay supported education on using this âhome made machineâ and the cost to develop the tests)
4. Continued education of both medical and lay is imperative
5. Financial support needs to be established via national contributions, international support and government support. (The current situation in India has shown that government support of patients is highly unlikely due to the overwhelming demands to control HIV, TB, Polio i.e. curable/controllable diseases.) Therefore funding must come from the communities where CF patients live and international sources.