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.