Cystic Fibrosis in India

1. Cystic Fibrosis in India Erika Roberts, Scott Poirier, Alyssa Lalonde, Kaylin Massie

2. The Problem • Cystic Fibrosis once thought non-existent in India • Only in Caucasian populations • Now estimates as high as 100,000 (IndUS Business Journal) • Limited governmental support • Few doctors interested in CF • Limited Access to healthcare • Diagnostic equipment (IMS Health) • Poverty • Can’t afford treatment (IMS Health) • Malnourishment

3. What is CF? • An inherited disease • Causes thick, sticky mucus to form in the lungs, pancreas and other organs • CF mutation exists on chromosome 7 CFTR genes (American Lung Association) • 50% chance of passing the mutation to their children, their children have a 50% chance of being carriers, and a 25% chance of being affected (National Heart, Lung and Blood Institute) • Both parents must at least be carriers of the disease to produce a child who is affected

4. Signs and Symptoms Respiratory • A persistent cough that produces thick spit (sputum) and mucus • Wheezing • Breathlessness • A decreased ability to exercise • Repeated lung infections • Inflamed nasal passages or a stuffy nose Digestive • Foul-smelling, greasy stools • Poor weight gain and growth • Intestinal blockage, particularly in newborns (meconium ileus) • Severe constipation (Mayo Clinic)

5. CF in India • First case was reported in 1968, once believed to be non-existent (Indian Journal of Clinical Biochemistry) • Yielding the largest population of undiagnosed cases in the world • These estimates range from 1 in 10,000 births to 1 in 40,000 births According to these estimates, there may be as many as 100,000 people suffering from CF in India Many Indian children will ultimately die at a young age from complications brought on by their CF (Pediatric Pulmonology) • As of 2006, there were only three major centers equipped to both diagnose and treat CF patients (Cystic Fibrosis Worldwide)

6. Economic Aspect • India remains one of the poorest countries in the world, with a per capita GDP of just $4,000 (Central Intelligence Agency) • Healthcare is extremely expensive for the poorer families • A 2013 study found that poor patients receiving outpatient care paid an average of 23% of their monthly income for each treatment in a public healthcare facility (IMS Health) • The high annual cost of CF treatments costs nearly $40,000 (American Lung Association). This is over ten times what the average Indian citizen makes in a year(IMS Health)

7. Environmental Aspect • India has a population of 1.2 billion The people of India have access to 90 hospital beds and 65 physicians per 100,000 residents • Compared to the United States citizens who have access to 300 hospital beds, staffed by 242 physicians • 72% of Indians live in rural areas • Access to about 1/3 of the beds • High population density increases the chances that CF patients acquire secondary infections such as pneumonia or bronchitis (Central Intelligence Agency)

8. Historical Aspect • Dr. Dorothy Anderson wrote the first medical report on cystic fibrosis in 1938 (Prasad et. al) • The disease was not discovered in India until the late 20th century • Dr. Raju Khubchadani has hypothesized that the disease was introduced into the country by the British through “cross-pollination” (Indus Business Journal) • Limited historical data and a lack of interest for CF in India has made training the doctors extremely difficult, according to Dr. SushilKabra, a professor at the All India Institute of Medical Sciences (AIIMS).

9. Cultural Aspect • Hinduism teaches that death is a crucial "transition," with karmic implications (University of Pennsylvania Health System) • Patients much rather die at home than at a hospital • These cultural practices may prevent medical professionals from treating patients in the later stages of CF

10. Political Aspect • India is considered a federal republic where the central government powers are limited and the states are self-governed (Central Intelligence Agency). • Indian government is reluctant to provide funding for CF research (IndUS Business Journal) • Without governmental funding, hospitals and clinics are forced to search elsewhere for help, or open up their own wallets

11. Interventions Health • Cystic Fibrosis Worldwide (CFW) -non-profit organization that helps to lobby for governmental support and raise funds for CF across the globe • CFW is working to reach out to affected patients in India who have limited access to healthcare • They are also lobbying to raise awareness for CF among doctors, as well as pushing to add the disease to medical school curriculums in India. (IndUS Business Journal)

12. Scientific Method • The Problem • Unknown prevalence • Hypothesis • Limited interest • CF misconceptions • Prediction • Raising awareness • Recruiting doctors • Testing • Establishing testing facilities • Epidemiological studies

13. Social Media • The number of internet users is expected to reach almost 243 million by June of 2014 (India Times) • With the most undiagnosed cases of CF in the world, many medical experts are now spreading awareness through Facebook, Pinterest, online news outlets, forums and blogs

14. Living with Cystic Fibrosis • Excessive sputum production • Multiple treatments

15. Living with Cystic Fibrosis • Surfing Video • http://www.pinterest.com/pin/143904150567870290/

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