How effective are small-time private donations in curing diseases?

Refers to: http://www.pennies.org/index.php/penny-charity/leukemia-and-lymphoma-society-15-billion-penny-milestone-reached-benefits-blood-cancer-research/79-penny-charity

Small-time, big-time, public or private, ultimately the issue is effectiveness of efforts. Can they cure (prevent debility and/or death from disease) or even eradicate (prevent it entirely)? There's probably no single approach or road-map for curing or eradicating diseases simply because so many factors are disease-specific, risk factors including genetics, transmission, geography, to name just a few. Even in 2016 the number of successfully cured or eradicated diseases is downright paltry, actually just one. Smallpox - Wikipedia is the only human disease to have ever been eradicated. On the verge of disappearing, Dracunculiasis - Wikipedia is a close second, largely courtesy the non-profit Carter Center - Wikipedia, whose motto is appropriately enough 'wage peace, fight disease, build hope'. Examining this rare illustrative example fully funded by small and large donations might help explain how to optimally put donations to use and what the process of eradicating a global disease might actually entail.

Guinea Worm Infection: What & How

Guinea worm (Dracunculus medinensis) is a parasite. People get infected by drinking water contaminated with water fleas (Copepod - Wikipedia) that carry and transmit Guinea worm larvae. Upon ingestion the fleas die, releasing the Guinea worm larvae, which penetrate through the GI tract into the abdominal cavity and remain there, taking ~ a year to grow into worms as long as 2 to 3 feet in length. Adult worms then break free through the infected person's skin, creating an extremely painful blister, locally secreting acid to burst it and slowly crawling out of the person's body over a month. Instinctive response to the searing pain from the blister burst is to plunge it into the nearest pool of water. This causes the worm to squirt a milky cloud of larvae that are then ingested by water fleas and so the cycle continues (see below from 1, 2). Though rarely fatal, unbearable debilitating pain, permanent tissue damage and even disability are Guinea worm disease hallmarks (3). Leaving its victims incapacitated for months at a time if not worse, its harmful effects ripple across already desperately poor communities, preventing children from attending school and farmers from working their land.

Entities Involved In Guinea Worm Eradication

The Carter Center: Spearheads the international Guinea worm eradication campaign (4). Works closely with national programs, WHO, US CDC, UNICEF, etc. Its activities include

• Compile and distribute case numbers.
• Provide technical and financial support to national programs.
• Provide continuing assistance to survey Guinea worm-free areas.
• Prepare nations for official certification.

National Ministries of Health

• Oversee national Guinea worm elimination programs.
• Hire and train field workers and supervisory staff.

WHO & US CDC

• Provide technical assistance.
• Verify whether worms from final patients are 'truly Guinea worms’.
• A panel of international Guinea worm disease specialists form the ICCDE (International Commission for the Certification of Eradication of Dracunculiasis Eradication)
• Established by the WHO in 1995 the ICCDE verifies and confirms whether a country has become Guinea worm-free based on the following criteria (5, 6).
• Adequate active surveillance systems have confirmed the absence of GWD for 3 or more years.
• A rumor log of suspected cases has been maintained for a 3-year period detailing:
• The particulars of each case
• The origin of each case
• The final diagnosis of each case (i.e., a true case of GWD or some other condition?).
• All confirmed cases imported from endemic countries have been traced to their origins and have been fully contained.

UNICEF

• Help provide safe drinking water sources to priority areas that national Guinea worm eradication programs identify.

Carter Center & Guinea Worm Eradication: What Made The Difference

According to former US President Jimmy Carter - Wikipedia (7), in the 1980s his former drug czar Dr. Peter Borne was the then-UN Assistant Secretary-General and visited the Carter Center seeking help in eradicating dreadful diseases such as Guinea worm that spread from bad drinking water but that garnered no interest because they occurred overwhelmingly among the desperately poor living in remote villages. According to Carter, the Carter Center avoids effort duplication and gets involved in efforts and issues others such as the WHO, the UN or even the US government aren't fully addressing. Thus they're involved in malaria, Guinea worm, river blindness, trachoma (the leading cause of preventable blindness in the world, 8), schistosomiasis and lymphatic filariasis.

• People living in Guinea worm endemic regions are taught to filter their water to remove the water fleas that carry and transmit Guinea worm larvae. Shaped like a pipe, these filters are portable water filtration units (8) that can be worn around the neck so wearers can use them as straws to filter their drinking water (3; see below from 4).
• Another portable filter is a hat with a mesh top. Water strained through this hat is safe to drink (8).
• These filters were developed by DuPont scientists after Carter explained their need to Edgar M. Bronfman of Seagram's and a major stakeholder in DuPont at a lunch in 1989 (9).

What made the crucial difference? An army of trained and dedicated volunteers (see below from 9, emphasis mine).

'While his campaign could not have succeeded without a large vision and contributions to match, the eradication of a disease ultimately depends on the dedication of workers in the field.

In rural Nigeria, as is true everywhere when literacy rates are low and telephones rare, everything must be done face to face. Twenty years ago, the Carter Center began its campaign by surveying 95,000 villages in Nigeria alone, sending someone to each one to ask if it had any cases of Guinea worm.

In each of the 6,000 villages that did, a team had to be formed to visit the authorities, explain the campaign and ask them to pick a "Guinea worm volunteer," someone who could read and write, would be willing to track each case, teach others how to roll worms out on a stick and keep their larvae out of drinking water.

The volunteers are unpaid. "They get a T-shirt, and people look up to them," said Dr. Cephas Ityonzughul, a consultant for the Carter Center's program in central Nigeria.

Supervisors like Mr. Ogebe are also unpaid but may get the use of a bicycle or motorbike, which in rural Africa are major status symbols. They also receive a Carter Center backpack full of sterile bandages.

Part of their job is to fight folk-medicine habits that sometimes die harder than any disease.'

Someone who reads the above and remains unmoved surely has a heart of stone. Even Civil War couldn’t deter Carter's staunch determination. Consisting of village-by-village case identification in areas accessible to the government, the Sudan Guinea Worm Eradication Program started in 1992 to 1993. While this helped interrupt disease transmission in northern Sudan by 2003, problem was not all areas were accessible due to a decades-long civil war between northern and southern Sudan. In 1995 Jimmy Carter even negotiated a 6 month 'Guinea Worm Cease Fire' (10).

Presenting the 2005 Gates Award for Global Health to the Carter Center, Bill Gates Sr. emphasized the tenacity and dedication of this army of volunteers in achieving such a startling success, the near-elimination of an ancient, dreaded, accursed disease (see below from 8).

'We all know there are critics who despair that people in the developing world are too incompetent or corrupt to take care of themselves. The Guinea worm effort has proved them wrong. In village after village, it is the people at the grass roots who have moved themselves and their countrymen to the verge of eradicating an ancient disease.'

Guinea worm Disease Numbers Since 1986

The non-profit Carter Center made Guinea worm eradication a centerpiece of its efforts in 1986. At that time there were ~26500 affected villages (8) with ~3.5 million cases per year (5).

• In 1998, the Carter Center received a US $9 million donation from the World Bank, American Home Products Corporation and the governments of Japan, Norway, UK and Denmark to start the final push for Guinea worm eradication (11).
• North and South Sudan signing a Comprehensive Peace Agreement (CPA) in Jan 2005 allowed the eradication program to proceed in South Sudan starting in 2006, at which time 20582 Guinea worm cases were reported from 3137 villages (10).
• In 2006, the Gates Foundation awarded the Carter Center its annual Award for Global Health for its Guinea worm eradication efforts (8).
• In 2008, 3618 of global 4619 Guinea worm cases (78%) were reported from 947 southern Sudan villages (10). The UK Department for International Development and the Gates Foundation then pledged US $55 million for its final eradication (12).
• Sustained effort and focus got the total number of cases for 2014 down to a mere 126 (3).
• By 2008 Guinea worm was eradicated in previously endemic Cameroon, the Central African Republic, India, Pakistan, Senegal and Yemen (10).
• By 2015, worldwide annual Guinea worm cases had dwindled to a mere 22 (13) and it had been eradicated the world over except Chad, Ethiopia, Mali and South Sudan (14).
• As of Aug 2016, a total of 12 cases worldwide with none reported from Mali (see below from 10, 13, 15).

Ironically, the last stage is the most expensive because given fewer annual cases, remote locations of most cases, one-year disease incubation period, maintaining a monitoring system that is simultaneously broad, sensitive and capable of providing a 'rapid response when necessary' becomes much more expensive.

• Though Guinea worm is not known to infect many other animals, recently Chad reported some cases of dogs with it (14). If this turns out to be more widespread then eradication efforts would have to include wiping it out in dogs as well.
• War, famine and other forms of instability in the last regions that are holdouts for Guinea worm could also slow down eradication process. For example, Mali reported only 7 cases in 2012 but more in 2013 and 2014 when conflict with Islamist rebels hampered field eradication efforts (14).

Thus, the yeoman efforts of the Carter Center-led Guinea worm eradication program show that absent vaccines, drugs and even therapies of any kind, vision, grit, and thorough, well-trained and dedicated volunteer ground efforts can make even relatively modest dollar amounts and low-tech approaches go tremendously far in not just making a dent but in fact in practically eradicating what was a global scourge as recently as the 1980s. Of course, this endeavor couldn’t have succeeded over so many decades without the Carter Center’s excellent, transparent communication and coordination of activities with its various partners, the WHO, US CDC, UNICEF, etc. Being a neglected tropical disease largely afflicting the impoverished in remote villages may also have been a blessing in disguise. With few others focused on this disease, the wastefulness inherent to effort duplication was easily avoided.

Bibliography

1. CDC - DPDx - Dracunculiasis

2. Jimmy Carter: 'I would like the last Guinea worm to die before I do'

3. Jimmy Carter's Work to Defeat Guinea Worm Highlighted in New Exhibit

4. Guinea Worm Eradication Program

5. Eradication Program

6. World Health Organization. "Criteria for the certification of dracunculiasis eradication." (1996). http://apps.who.int/iris/bitstre...

7. 'Watch Out, Guinea Worm, Here Comes Jimmy Carter'

8. Carter Center News and Publications - Gates Award for Global Health Speech

9. Dose of Tenacity Wears Down a Horrific Disease

10. Chapter 108. Dracunculiasis. Ernesto Ruiz-Tiben, Donald R. Hopkins. Guerrant, Richard L., David H. Walker, and Peter F. Weller. Tropical infectious diseases: principles, pathogens and practice. Elsevier Health Sciences, 2011.

11. Timeline and History: 1990-1999

12. Carter Center Receives Historic Guinea Worm Challenge Grant from Gates Foundation

13. An International Health Organization Committed to Guinea Worm Disease Eradication and Disease Control Health Programs

14. This Species is Close to Extinction and That's a Good Thing

15. Hopkins, Donald R., et al. "Dracunculiasis eradication: the final inch." The American journal of tropical medicine and hygiene 73.4 (2005): 669-675. https://www.researchgate.net/pro...

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