Category Archives: END Fund

Taking the “neglect” out of “neglected tropical diseases”

NTD-Competitions-BlogImage-1Today we’ve posted an essay by Rice University rising junior Anjali Bhatla, one of five winners of a student competition on raising awareness of neglected tropical diseases (NTDs), a group of parasitic, viral and bacterial infections that afflict mainly those living in extreme poverty.

The writing contest and related outreach competition are associated with a Sept. 29-30 Baker Institute conference on NTDs in the U.S. and Mexico. One winning essay will be featured here each week leading up the conference.

The public is invited to attend the Baker Institute NTD conference, but an RSVP is required. Please click here for more information and to register for the event.

Most people have never heard of diseases such as Chagas, elephantiasis, or ascariasis. However, these illnesses are some of the 17 infectious diseases the World Health Organization has categorized as “neglected tropical diseases” (NTDs). NTDs are said to affect the “bottom billion” of the world’s population, or those who are living on less than $1.25 per day. NTDs, which have a high morbidity, have been shown to perpetuate the cycle of poverty due to their ability to impair physical and cognitive development, negatively affect maternal and child health, and socially stigmatize those who are afflicted. Regardless of the disabling economic consequences of NTDs, they have been largely ignored, continuing to persist in the world’s most marginalized populations. Contrary to popular belief, NTDs do not just exist in developing countries, but rather have been shown to also exist in pockets of poverty in developed countries. Given the neglected nature of NTDs, there is plenty that we as students can do to make a difference in the lives of those living with NTDs. Ending the neglect requires three steps: 1) education, 2) awareness, and 3) advocacy.

Education is a key component in impacting the field of NTDs. Through educating ourselves, we can articulate the importance of NTDs to others. This requires understanding what aspects of NTDs contribute to the neglect they continually face. First, they have a high morbidity, rather than high mortality, rendering them “less important” than diseases such as HIV and tuberculosis. However, morbidity can have just as disastrous consequences as mortality, and NTDs render those infected chronically disabled. Second, NTDs predominately affect those living in impoverished countries, which makes it difficult to communicate the ramifications of the diseases to individuals with the social and political capital to aid endemic countries. Third, the demographics of infected individuals make it unprofitable for pharmaceutical companies to pursue therapies for NTDs. These factors are the reasons why it is of utmost importance for us as students to educate ourselves about NTDs and communicate the value of preventing these diseases to others.

Engaging the public is imperative if we are to mobilize a movement to end NTDs. This requires using our knowledge to disseminate information on the social and economic consequences of NTDs and the need for the public to address these issues through fund-raising and advocacy. A great way for students to increase awareness of NTDs on campus is to start an END7 chapter at their college. END7 aims to increase awareness of the seven most common NTDs and raise funds for mass drug administration, which can greatly reduce the incidence of NTDs in endemic countries. Through a student organization such as END7, undergraduates can exchange ideas on how to address the health disparities prevalent in endemic countries, engage in dialogue with peers on the importance of addressing NTDs, and implement creative events, programming, and social media campaigns to increase understanding of NTDs at a societal level.

The team that will be spearheading END7 at Rice University, of which I am a member, has discussed a number of creative projects, including depicting stories of patients with NTDs, creating an “NTD week” to educate students on the scientific and social aspects of a different disease each day, and sponsoring a 5K with seven water stops, each featuring information on an individual NTD. Utilizing social media can be a way of reaching a much wider audience, and college students are in a unique position to capitalize on the use of technology. A social media campaign in which a person takes a picture of themselves taking action against NTDs and uses the hashtag #nomoreneglect could be a potential way of incorporating a much larger audience into the conversation. Ultimately we want to increase awareness in order to spur action in others, and I believe a great way of doing this would be to create a service-learning grant program in which students could apply for money to implement a project that addresses NTDs in a creative way. These grants could fund projects such as a student policy competition on NTDs or the creation of curriculum to educate K-12 students on NTDs. By funding student projects around the country and world, each person can have a leadership role in taking action against NTDs.

Ultimately, I believe policy structures need to be utilized in order to address the health disparities that cause NTDs. Low socioeconomic status, inadequate health systems, and the need for proper infrastructure for clean water and sanitation are root causes of NTDs. We need to frame NTDs as a social justice issue in health: a realization that elements of society disproportionately contribute to this public health issue and policy should be drafted to aid those in need. Students can have a profound impact on policy by speaking with their local and national representatives about important issues and advocating for certain pieces of legislation. For example, most of the funding for fighting NTDs comes from developed countries, and policymakers are proposing a cut in funding in the current US budget. By calling representatives, writing letters, and signing petitions, it is possible to convince Congress of the importance of retaining funding for NTDs. As students, our voice is incredibly important, and we have a social responsibility to engage in the political process and advocate for NTDs at the governmental level.

More than one billion of the world’s population is suffering from NTDs, a staggering amount of people to be affected by a group of infections few have heard of. We cannot continue to let this injustice occur, and as the next generation we need to be civically minded students. Addressing the issue of NTDs is critical to improving the health and economic productivity of over one-seventh of the world’s population. Through education, awareness, and advocacy of NTDs, we can drive significant social change and work toward taking the neglect out of neglected tropical diseases.

Anjali Bhatla is a rising junior at Rice University majoring in health sciences and policy studies. Bhatla founded the Rice University chapter of the END7 campaign, which aims to raise awareness and funds for the seven most common neglected tropical diseases (NTDs). She plans to pursue an M.D./MBA dual degree and ultimately develop and implement policies that help make health care systems more equitable and efficient.

This essay originally appeared on the Baker Institute Blog.

Summiting to See the End of Neglected Tropical Diseases

 

SummittoseetheEND

 

Eliminating the most prevalent neglected tropical diseases (NTDs) from our planet is an ambitious goal. It requires commitment, patience, know-how and dedication: qualities that are also required to summit Mount Kilimanjaro. This summer, the END Fund together with dedicated visionaries, NTD experts, humanitarians and business entrepreneurs, will trek to the top of one of the world’s highest peaks while raising awareness and resources for the fight against NTDs as part of the organization’s initiative, Summit to See the END.

According to Sarah Marchal Murray, Senior Vice President of the END Fund, Summit to See the END came into fruition after a new board member and avid hiker joined the END Fund team this past summer. His combined passion for hiking and ending NTDs in children fueled the idea. In November, the END Fund turned this idea into a reality as they “soft launched” the project and started to spread the word amongst the END Fund community.

The ultimate goal of the journey is three-fold:

  1. to demonstrate the exhilaration that comes from tackling the 19,341 ft summit and draw the parallel in tackling NTDs,
  2. to raise awareness about NTDs and how they affect the most impoverished populations, and
  3. to mobilize crucial donations for the END Fund’s work in 2014 and beyond.

Hikers also pledge to reach out to their networks to help achieve these goals, in addition to making an initial individual commitment. After summiting Kilimanjaro, they will also participate in an NTD learning day where they’ll be able to see NTD control programs in action, interact with those closest to the cause, and meet members of a community affected by these debilitating and disfiguring diseases.

But the journey to the top of Mount Kilimanjaro is far more meaningful than a set of goals typed on a website. Sarah sees this trek as a life-changing and transformative journey that requires those involved to deliberately reflect on their own commitment to ending NTDs, as well as the lives of those suffering from these debilitating diseases.

Besides getting the body and mind in shape for the hike, the training process also provides the hikers with another way to connect with their families and communities and increase NTD awareness.

The END Fund hopes that the experience will leave a lasting impression, fueling the hiker’s engagement with the NTD cause and motivating each hiker to share their experiences with those close to them – further expanding the network and increasing awareness for NTDs.

“Providing our community with a link to the people we serve was important to us. We think the summit is symbolically significant: if each individual hiker comes home and shares with their networks and circles how it personally touches them, there’s a ripple effect,” Sarah explained. “While financial resources are imperative if the NTD community is going to reach our aims of control and eradication by 2020, there is great power in the amplification of our voices amongst each hiker’s personal circles.”

For hikers like Sarah, this experience is a very personal one. In a letter addressed to her friends and family, she explained why she is making the trek.

“Partially because of where my husband and I are lucky enough to live, we won’t have to worry about our daughter contracting one of the five disabling, debilitating and deadly diseases known as NTDs. A group of parasitic and bacterial infections, they affect nearly 800 million children and are the cause of death for over 500,000 people per year.”

“So [I am hiking] to prove to myself and my daughter that anything is possible.” In addition, she writes, “[I am hiking] so that the only worms I need to educate my daughter about live in the ground and not inside children her own age.”

Ultimately, like the fight to end NTDs, the preparation and hike up Mount Kilimanjaro is a marathon – not just a sprint.

“NTDs won’t be wiped off the planet this year,” Sarah said. But if we concentrate our efforts, join together with the growing international movement committed to seeing their END, and continue to push forward, “we can summit to see the END in our lifetimes.”

Learn more about the END Fund and Summit to See the END.

A Minute with NTD expert: Ellen Agler, Chief Executive Officer of the END Fund

END Fund logo

At the recent “Uniting to Combat NTDs: Translating the London Declaration into Action,” we had a chance to catch up with Ellen Agler, Chief Executive Officer of the END Fund. The END Fund is a private philanthropic fund mobilizing resources for neglected tropical diseases in Africa.

Global Network: What does it take for exposed individuals to fight NTDs?

Ellen Agler: When I was in Mali, I also got a chance to see in addition to the mass drug administration other aspects of the program. There is a huge backlog of trichiasis surgery. Blinding trachoma, if it starts advancing, it is incredibly painful… It feels like sand going over your cornea, and you will go blind if you don’t get this surgery in the advanced stages.

And to see how simple of a surgery it was- that it really only took 10 or 15 minutes. [END Fund] do have this incredible message of about 50 cents per person per year can protect you against these seven diseases that cause disability, cause suffering, cause blindness, and really change the trajectory of your life. And that is a simple message, and I think that we’re all rallying to ensure that we can prevent these diseases, we can treat them in the early stage so that no one has to suffer those diseases.

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The End is in Sight: Progress towards Trachoma Control and Elimination

 

Trachoma is one of the world’s leading cause of preventable blindness, affecting populations prone to poverty and with limited access to clean water and sanitation. While the disease is primarily transmitted through contact with the infected person’s eye discharge, it can also be carried through flies. As a bacterial infection, trachoma causes scarring on the inside of an eyelid and repeated exposure can eventually lead to trichiasis, when the eyelids turn inwards. The impacts of trichiasis over time – eyelashes scraping against the cornea each time the eye blinks – leads to blindness.

This devastating disease is most commonly found in poor communities, often in Africa and Asia. However, in a recent publication discussing the need for elimination and control of neglected tropical diseases (NTDs), including trachoma, Sabin president Dr. Peter  Hotez and his co-authors stressed the high rates of disease burden in the Oceania region (Australia and the Pacific Islands).

In an interview with Girish Sawlani of ABC Radio Australia, Dr. Hotez discussed the unexpectedly high rate of NTDs within populous and poor regions in Oceania, such as Papua New Guinea and the Aboriginal populations in Australia. He compared his concern for the “hidden burden of disease” to the exposure of NTDs in places like Sub-Saharan Africa and South East Asia. Trachoma currently impacts approximately 41 million people across 57 different countries that don’t have access to proper resources or knowledge that would assist in reducing exposure to the disease.

In spite of the highly endemic situation, strides have been made to control or even eliminate trachoma across various platforms. The World Health Organization (WHO) has been using a comprehensive public health strategy, better known as SAFE, to treat trachoma patients through a combination of surgery (S), antibiotics (A), facial cleanliness (F) and environmental educational efforts (E). In Australia, professor of indigenous eye health at Melbourne University, Hugh Taylor, has further encouraged research and action against trachoma. Taylor estimates that trachoma and related blindness can be “virtually eliminated in five years” with access to appropriate funds in Australia.

The cooperation between organizations working to control trachoma in the Oceanic region and government aid figures will play a critical role in not only improving health concerns, but also addressing issues regarding the economy and social action. AusAID is currently working with organizations, such as the Fred Hollows Foundation, to strengthen partnerships and stimulate research and action in order to bring an end to the spread of trachoma in the region.