Upload
johnathan-cain
View
227
Download
0
Tags:
Embed Size (px)
Citation preview
Cystic Fibrosis in India
Erika Roberts, Scott Poirier, Alyssa Lalonde, Kaylin Massie
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
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
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)
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)
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)
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)
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. Sushil Kabra, a professor at the All India Institute of Medical Sciences (AIIMS).
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
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
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)
Scientific Method
The Problem Unknown prevalence
Hypothesis Limited interest CF misconceptions
Prediction Raising awareness Recruiting doctors
Testing Establishing testing facilities Epidemiological studies
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
Living with Cystic Fibrosis
Excessive sputum production
Multiple treatments
Living with Cystic Fibrosis
Surfing Video
http://www.pinterest.com/pin/143904150567870290/
Webliography
"Corticosteroids." Cleveland Clinic. Cleveland Clinic, 16 Sept. 2010. Web. 30 Mar. 2014
"Cystic Fibrosis." Lung Disease Data: 2008 (2008): 55-59. Lung USA. American Lung Association, May 2008. Web. 24 Mar. 2014.
"Cystic Fibrosis." Mayo Clinic. Mayo Clinic, 13 June 2012. Web. 26 Mar. 2014
Ehman, John. "Religious Diversity: Practical Points for Health Care Providers." University of Pennsylvania Health System. Penn Medicine, 8 May 2012. Web. 28 Mar. 2014.
"IMS Health Study Establishes Roadmap to Address Healthcare Access Barriers in India." IMS Health. IMS Institute for Healthcare Informatics, 19 July 2013. Web. 11 Mar. 2014.
"India to Have 243 Million Internet Users by June 2014: IAMAI." The Times of India. IndiaTimes, 29 Jan. 2014. Web. 26 Mar. 2014.
"Indian Freedom Struggle." Know India. National Informatics Centre, n.d. Web. 29 Mar. 2014.
Imbesi, Paul. "Thought Rare, Cystic Fibrosis Now Rising in India | Articles |." IndUS Business Journal (2006): n. pag. IndUS Business Journal Online. The Mishra Group Inc., 4 May 2006. Web. 25 Mar. 2014.
Lakhan, Shaheen E. "Hinduism: Life and Death." Global Medicine. International Federation of Medical Students' Associations, n.d. Web. 28 Mar. 2014. Noke, Christine, and Sushil K. Kabra. "Cystic Fibrosis in India." Cystic Fibrosis Worldwide. Cystic Fibrosis Worldwide, 15 July 2006. Web. 29 Mar. 2014. Prasad, R., H. Sharma, and G. Kaur. "Molecular Basis of Cystic Fibrosis Disease: An Indian Perspective." Indian Journal of Clinical Biochemistry 25.4 (2010): 335-41. National Center for Biotechnology Information. National Institutes of Health, 19 Nov. 2010. Web. 25 Mar. 2014. "Rural India's Access to Healthcare Patchy: Study." The Economic Times. Bennett, Coleman & Co. Ltd., 22 July 2013. Web. 11 Mar. 2014. "What Is Cystic Fibrosis?" National Heart, Lung and Blood Institute. National Institutes of Health, 26 Dec. 2013. Web. 23 Mar. 2014. "The World Factbook." Central Intelligence Agency. Central Intelligence Agency, n.d. Web. 10 Mar. 2014.