Tonight well wrap up our Hannukah and NTDs series with a focus on the remaining NTDs as defined by the WHO: buruli ulcer, dengue fever, guinea worm, African sleeping sickness, leishmaniasis, and leprosy. At the Global Network, we are commonly asked why do you only focus on seven NTDs? The seven NTDs weve detailed over the last seven nights are the most common NTDs, representing approximately 90% of the total disease burden. We also focus on them, however, because they are generally referred to as tool-readythat is to say, we have medications that are safe, affordable, and available to treat the seven most common.
Which brings us to the other NTDs that also cause significant suffering among the poorest of the world’s communities. Like the most common ones, these NTDs promote the continuation of poverty in developing communities by impairing physical and intellectual growth and decreasing worker productivity. But unlike the others, they are either missing treatment/control tools altogether or the tools are difficult to access or afford.
For the most neglected diseases, patients are so poor that they have virtually no purchasing power and cannot spark market interest in drug R&D among pharmaceutical companies. Recently, the field of R&D for neglected diseases has seen the emergence of several new organisations, new donors, new financial mechanisms, and a new political environment.However, although the global R&D landscape has improved for neglected diseases since 2003, the dire needs of the most neglected victims who carry on suffering in the developing world are still largely unmet. A recent study by G-Finder revealed that less than 5 percent of worldwide R&D funding for neglected diseases has been directed towards the most neglected diseases.
At the Global Network, were always looking for an excuse to celebrate and an excuse to talk about NTDs in a new way. With Hannukah beginning tomorrow night, we thought wed take the opportunity to get back to basics and offer refresher posts on the diseases themselves. For each of the first seven nights of Hannukah, well spotlight one of the seven most common NTDsascariasis, trichuriasis, hookworm, schistosomiasis, lymphatic filariasis, onchocerciasis, and trachomaand on the eighth night, well talk about the other less-common NTDs that dont necessarily have treatment that is available or affordable.
Some of the updates well write, but for others well try to call in the global experts who have worked on these diseases for decades. So when you need a break from playing dreidel and eating latkes, be sure to visit End the Neglect starting tomorrow and throughout next week for more on NTDs.
On Decemeber 10th, International Human Rights Day, President Obama became the 3rd sitting U.S. President to accept the Nobel Peace Prize. In his highly anticipated speech, Obama humbly acknowledged the controversy his nomination generated and spoke of being Commander in Chief of a nation involved in two wars. He repeatedly channeled Gandhi, Martin Luther King, Jr., and President Kennedy and noted that his accomplishments are slight compared to his predecessors. The President used the opportunity to praise international institutions, emphasize the value of international cooperation, and stressed the interconnected nature of the worlds problems: It is undoubtedly true that development rarely takes root without security; it is also true that security does not exist where human beings do not have access to enough food, or clean water, or the medicine and shelter they need to survive. It does not exist where children cant aspire to a decent education or a job that supports a family. The absence of hope can rot a society from within.
Perhaps most importantly on this 61st anniversary of the Universal Declaration of Human Rights, he reiterated Americas commitment to international human rights standards. I have reaffirmed Americas commitment to abide by the Geneva Conventions. We lose ourselves when we compromise the very ideals that we fight to defend we honor those ideals by upholding them not when its easy, but when it is hard. He referenced the ethos drafters of the Declaration: In the wake of devastation, they recognized that if human rights are not protected, peace is a hollow promise.
Emily Cotter is a second-year medical student at George Washington University in Washington DC. This summer, through Global Network founding collaborator Helen Keller International, Emily worked on NTDs in Sierra Leone. Below is the final installment of her 4-part series detailing her experiences.
After working on the public health side of NTD control projects earlier in the summer, I thought it would be interesting to see the clinical side of the NTD world. Emmanuel, a Community Health Officer student (essentially the equivalent of a medical student) who works closely with HKI staff on NTD projects, was scheduled to work at a clinic in July. I decided to shadow him at the clinic for a couple of weeks, which brought me to Bo, the second-largest city in Sierra Leone.
The health care system in Sierra Leone is all fee-for-service. In many areas of the country the average income is $0.11 per day and the cost of seeing a health care provider is usually at least a couple of dollars. Due to this, most people don’t get the care they need and if they do visit the healthcare system they present very late when it is usually a dire emergency. Médecins Sans Frontièrs (MSF, also known as Doctors Without Borders) has been working in Sierra Leone since the beginning of the country’s civil war and supports a few clinics around Bo. The government runs these primary care clinics; however, MSF provides the medications and covers the patient fees at these clinics while also operating a secondary health care referral center. This referral center can accommodate minor surgeries and monitor cases of severe malaria, malnutrition and other complex health problems. Emmanuel was placed at one of the MSF-supported primary care clinics for his practical experience and I was very excited to have a chance to learn more about their operations on the ground – I’ve wanted to work with MSF for more than a decade!
Most of the pediatric patients who came to the clinic were either infected with Plasmodium falciparum (malaria) or were extremely malnourished. The rainy season had begun in Sierra Leone, which I learned brings with it malaria and malnutrition season. MSF operates both in-patient and outpatient therapeutic feeding programs so I saw quite a few very sick kids being treated for marasmus and kwashiorkor (different types of malnutrition). I was continually struck by the contrast between the health problems in the United States relating to obesity and the other side of the hunger spectrum that I witnessed in Sierra Leone.
There was an “unholy trinity” of childhood anemia etiologies: malaria, malnutrition, and helminth infections ravaged children and left many severely anemic. Some children had dangerously low hemoglobin levels – from 4.2 g/dl to 3.2 g/dl, and even as low as 2.5 g/dl! (Hemoglobin levels should be above 12 or 13 g/dl; it is usually considered an emergency if they fall below 7 g/dl.). A young child actually died at the clinic one day; she was incredibly anemic, had severe malaria, and went into heart failure. Clinic health care workers typically send the kids with low hemoglobin levels to the MSF referral center where the children receive a blood transfusion. Given the lack of infrastructure and reliable access to electricity, no large blood bank exists in Sierra Leone. Instead, parents are asked to donate blood for their kids if their blood type matches. Another child with a dangerously low hemoglobin level came to the clinic the afternoon the girl died and no family member was able to donate blood for her. Being O+ and an almost-universal donor, I gave a pint of my blood for her. The blood draw was not the greatest, so for the subsequent two weeks my bruise was a visible reminder of the devastation of tropical diseases in this region of West Africa.
Emily Cotter is a second-year medical student at George Washington University in Washington DC. This summer, through Global Network founding collaborator Helen Keller International, Emily worked on NTDs in Sierra Leone. Below is part 3 of her 4-part series detailing her experiences.
Sierra Leone pulled off its first national preventive chemotherapy campaign for schistosomiasis this summer and luckily my internship coincided with the timing of this event. I was able to spend a week and a half supervising the prophylactic chemotherapy (PCT, aka mass drug administration) program with the HKI program coordinator for NTDs, Mustapha Sonnie. This event was a huge undertaking: surveillance for schisto was done throughout SL and any district that had a prevalence of schistosomiasis (either mansoni or haematobium) greater than 10% was included in this drug treatment program. This turned out to be planning treatment for more than 640,000 children! Funding for this program came from USAID’s Neglected Tropical Disease program, with the funding passed through RTI (Research Triangle Institute) and HKI on its way to the Ministry of Health and Sanitation.
It was fascinating to see the implementation of such a large-scale public health campaign! Sierra Leone has previously implemented PCT campaigns for other diseases such as onchocerciasis, lymphatic filariasis and soil-transmitted helminths using an approach called Community-Directed Treatment with Ivermectin. This approach uses community-based drug distributors who are trained volunteers that distribute ivermectin and albendazole in their communities. The PCT campaign for schistosomiasis did not use these volunteers; instead, the Ministry of Health and Sanitation trained the peripheral health unit staff to distribute praziquantel using a height-pole for accurate dosing. Mebendazole was also given to children during this campaign so children were simultaneously treated for soil-transmitted helminths and schistosomiasis. Praziquantel needs to be given with food so funding was also distributed to provide a meal at school before children were given the medications.
In the global health community there is so much focus on deathdeaths caused by a disease, deaths averted by an intervention, deaths prevented through programmingthat we often forget that over a billion people continue to live each day with disability from infection, injury, and illness. At the Global Network, we frequently talk about the burden of NTDs in terms of DALYs, or disability-adjusted life yearsyears of potential life lost due to premature mortality and the years of productive life lost due to disabilitybecause while NTDs do not frequently kill those infected, they are horrifically disabling.
Today, on the UN-designated International Day of Persons with Disabilities, we want to share a few stories of NTDs disabling impact, as a reminder that death is only part of the global health story. Just as importantly, though, we want so share the good newsthat in each of these cases, treatment is widely available and incredibly inexpensive.
Anjani: As she collected drinking water alongside other children on the banks of a river in southern Nigeria, Ajani had no idea that the water running through her village bred flies that would infect her with a disfiguring and disabling condition. By the age of six, Ajani had contracted onchocerciasis. This disease, commonly called river blindness, infects 37 million of the world’s most vulnerable people and causes partial and often complete blindness, oozing infections of the eyes, and immeasurable itching and pain. People in this part of Africa say ‘the river eats your eyes;’ in some communities, nearly 15% of the population is blind, with as many as 40% of adults visually impaired, robbing many of their livelihoods and condemning entire communities to a continued cycle of poverty and disease.
The good news: Within just four years of receiving her first annual treatment (donated by Merck & Co.), her skin was completely cleared of lesions. Her husband came back, pleading with his father-in-law for her return. Today, villagers from surrounding communities seek Ajani out, eager to learn how her beautiful skin was miraculously restored. Best of all, Ajani’s village requested that she become the local distributor for Mectizan, elevating her status, helping her deliver essential aid to the community, and transforming her into a valued spokeswoman for change.
Of all the most coveted fashion pieces of 2009, few items compare to Global Network t-shirts. Like many other stylish individuals around the world, staff at Check Orphana dynamic and interactive platform dedicated to people working with or affected by rare, orphan or neglected diseasesis in on the trend, wearing our gray t-shirt on their recent YouTube video newsflash.
PS: Nothing says I love you or happy holidays quite like our t-shirts, made of sweatshop-free American Apparel cotton in sizes S-XL. Make a bold fashion statement or give a great gift this season and find out how to order here!
Amidst the frenzy of World Toilet Day and hysteria in Indonesia, wed be remiss to not wish one of our Global Network Ambassadors, Gov. Tommy Thompson, a very happy birthday!
Gov. Thompson surrounded by children at an NTD control campaign in Rwanda
Thompson, a 4-term governor of Wisconsin and former Health and Human Services Secretary, has also been actively involved with the Global Network since July of 2008. After hearing about the devastation caused by NTDs and the cost-effective solutions available, he jumped at the opportunity to travel to Rwanda to see our treatment efforts first-hand (watch his dynamic trip video diaries here). Hes also been a huge supporter of integrated efforts with the malaria community and the concept of medical diplomacy.
From the entire Global Network Team, happy birthday Gov. Thompson! Thank you for your commitment to advocacy and policy work on behalf over a billion people suffering from NTDs around the world.
As Policy Associate for the Global Network, my brain is filled on a day-to-day basis with jargon like R.O.I. and vertical vs. horizontal and congressional budget justifications. So to some extent, my attendance at todays ASTMH clinical pre-course on NTDs felt like listening to experts speaking in another language, or at least in a distant dialect. Micro-array analysis and allelic distortion and microfilaremia flew throughout the day, reminding me of the tremendous gaps between the technical and advocacy worlds of global health, both in the words we use and in the techniques through which we hope to achieve progress.
But relying back on my global health education, I was still able to take much away from the course, and I particularly enjoyed a number of anecdotes shared throughout the day:
Dr. Alan Fenwick of the Schistosomiasis Control Initiative joked about Prince William of the UK acquiring schistosomiasisa rare tropical disease to the British tabloids, but one that impacts over 200 million people globally.
Dr. David Freedman of UAB told the story of a Peace Corps Volunteer in Sierra Leone who was infected with onchocerciasis for over a year upon return to the US before she received proper diagnosis and treatmentall the while suffering from itching, rash, and even an internal, muscular nodule.
Dr. Paul Emerson from the Carter Center spoke movingly about trachoma. He showed a picture of a young woman with early stages of infection; she was not yet blind but was suffering incredible pain as her eyelashes constantly scratched her cornea. As a result, she could not work, farm, cook over an open fire, or even stand to be in the bright sunlight for long periods of time, leaving her physically, mentally, and socially depressed. As he reminded us, blindness is the most overt consequence of trachoma, but it is not the full story.
Leaving the course, I was most impressed by those who were able to take vast clinical knowledge and make it relevant even to the most wonky policy audience members. Because at the end of the day, even the most meaningful research on NTDs will not motivate corporations and governments to act unless we as advocates can compel them to do so.
Emily Cotter is a second-year medical student at George Washington University in Washington DC. This summer, through Global Network founding collaborator Helen Keller International, Emily worked on NTDs in Sierra Leone. Below is part 1 of her 4-part series detailing her experiences.
I began my summer project in Sierra Leone with sweltering heat, a light microscope and stool samples. I had no idea what to expect when I agreed to come to Sierra Leone to work with Helen Keller International (HKI) on a neglected tropical disease (NTD) internship: when planning my project with the HKI Country Director in Sierra Leone we agreed that flexibility would be paramount. I was looking forward to being spontaneous when it came to projects – it was going to be a welcome break from the routine and scheduled life of my first year of medical school. Even still, contributing to schistosomiasis and soil-transmitted helminth surveillance through stool sample microscopy had not been anything I’d anticipated! However, here I was at Fourah Bay College sweating in my white lab coat, crossing my fingers for a slight breeze while bent over a generator-powered microscope looking at Schistosoma mansoni eggs in stool samples.
The Global Network for Neglected Tropical Diseases is an advocacy initiative dedicated to raising the awareness, political will, and funding necessary to control and eliminate the most common neglected tropical diseases (NTDs)--a group of disabling, disfiguring, and deadly diseases affecting more than 1.4 billion people worldwide living on less than $1.25 a day.