Our team’s official project period (FLEX) has just begun! Unfortunately, due to COVID circumstances, we are unable to travel to Nepal this year and partake in activities such as education modules and forum theatres. However, during this time, we will be creating a project summary report through compiling the past 5 years of research and data. In addition, we will be exploring new topics via literature review, to expand our knowledge base on SCD in Nepal, and how we can help. Finally, we aim to do virtual qualitative interviews with SCD patients, in order to assess needs and barriers with regards to treatment. We hope everyone stays safe and healthy, and as always, thanks for supporting our project!
Hi! We’re the 2020 team (Keiko, James, Sam, Chris, Katherine & Sarah) and we’re so excited to continue this amazing project in 2020. This photo was taken at our first fundraiser back in November, where we had over 80 medical students and friends join us. In total, we raised 1391.45$! We would also like to extend a big thank you to last year’s team who have done so much to guide us and integrate our team into the project. It is truly heartwarming to see how much love and passion each of them hold for Nepal, the project, and progressing health literacy, screening and awareness of sickle cell disease both locally and globally. Thank you to all that keep up with our blog, here’s to a new year!
It has been a couple of weeks since the end of our time in Nepal, and it is safe to say that everyone on our team left feeling incredibly inspired by and grateful towards the CP staff that we worked alongside throughout the course of our FLEX project. In addition to the amazing work that they do such as SCD awareness, Hero Girls, Mothers’ Groups, and Microcredit Loan programs, CP created a heartwarming environment that left us feeling like family.
You could immediately tell that CP has earned the respect of the community and this is entirely due to the way that CP staff conduct themselves and the amazing work that they do as an organization. It was evident that CP not only care about the communities in Dang, but are also an integral part of them. This was exemplified by the way they welcomed everyone through their doors. The neighbourhood children would come by the Unako House in the evenings and play, joining in on meals and community activities. These children live on the neighbouring farms, and we were unsure whether they attend school as they were always around at the office. The fact that the children chose to come to our workplace in their free time showed us that Unako House is a place where anyone can come to feel welcomed, supported and accepted.
During our time in Nepal, we met one doctor in particular who is a huge advocate for SCD patients and agreed to deliver our educational module to the local officials in the Dang district. The presentation stressed why SCD is more prevalent in the indigenous Tharu population, the burden of disease on this population and the need for more resources to improve the quality of life of affected individuals. It was encouraging to see these local officials travel the distance they did to attend the meeting, and even more encouraging to see their positive reception of the presentation. One of the local officials took the floor after the presentation and pledged to equip the local health posts with tools they need to screen the communities in the area. The local doctor also suggested that it be a requirement for all neonates to be screened for SCD, however, realizing that policy change takes time, the officials pledged to encourage screening as early as possible in the meantime. This meeting highlighted the direction that the project should take for future teams. A big lesson we learned during our time in Nepal is that ultimately, the most sustainable change that we can effect will come as policy change at the government level. Future teams should continue putting pressure on the government and local officials to make policy changes that increase screening, diagnosis and treatment of SCD in the Tharu population. As these policy changes continue to develop, it is important to continue our educational initiatives aimed towards increasing communities’ awareness and understanding of SCD, and supporting mass screening days that encourage local communities to take initiative of their own health.
As one of our education initiatives, the Sickle Cell Team and Creating Possibilities staff held ‘forum theatres’ in the community – educational plays held outdoors to convey key information about sickle cell disease (SCD).
After hours of arduous rehearsals in the sweltering heat, our team and the CP staff felt stage ready for what would be the performance of a lifetime. Keegan finally had his red carpet debut, as the lead role in the play.
The forum theater told the story of a family of five going through the screening, diagnosis and treatment process of SCD in Nepal. It incorporated facts about SCD, some comedy, and a light-hearted tone to keep the crowd engaged. CP staff members played parents both with sickle cell trait, while Keegan, Lisa, and Iulia played the children, with sickle cell disease, normal, and sickle cell trait, respectively. We learned a few key Tharu phrases for the play, with a fan favourite being Keegan’s high pitched delivery of “Aiya! Bataita!” (which means “Ouch! Pain!”) when getting blood drawn for the screening and diagnosis.
Traditionally, music and dancing precede these forum theatres to gather an audience. These forum theaters are set up in open public spaces, such as in front of convenience stores or local municipalities, with portable speakers, microphones, props, and lawn furniture. Our dancing drew laughs, cheers, and a lot of strange looks as our Canadian rhythm (or lack thereof!) did not compare to the skill of Nepalese dancers. The music was a mixture of popular Nepali tunes, such as “Salko Paat” and some North American songs like “the Macarena”.
For our second production, we wisely recruited CP’s “Hero Girls,” who had much better dance moves than any of us. The Hero Girls training course aims at building confidence and self-esteem through focusing on three aspects: self-development, entrepreneurship, and leadership. It was clear how empowered and confident these girls felt, as they danced and sang freely to Nepali music, and told us about themselves and their aspirations. Through our interaction with them, their level of education was evident and they were some of the best English speakers in Dang. We were all inspired by these clever and confident young women, who undoubtedly will become leaders among their peers and in their communities.
Our team and the CP staff all had a lot of fun holding these forum theatres, and we were amazed at the number of people that came out to watch. The music and dancing that preceded the theatres immediately gathered an audience, with people on scooters even pulling over to see what was going on. We were happy to see that the crowd stuck through the entire play, and the audience’s smiles and laughter throughout reassured us that they were engaged. We hope that these plays increased awareness and understanding of SCD in these communities. Moreover, we are optimistic that those who attended the theatres will share their new knowledge of SCD with their friends and family members and that this will ultimately lead to more people getting screened.
We travelled up and down windy, switchback mountain roads to Ghorahi Hospital, the largest hospital in the Dang Region. Our hour long journey was replete with dodging massive Tata trucks, each decorated in its own unique way. The route also gave us a closer look at a region in the midst of change; while fires ravaged the forest and destroyed what was there, labourers were hard at work updating the pothole ridden roads and constructing new homes and buildings. By talking to the locals, we’ve learned that the roadwork was a promise from the current Nepalese government – a measure meant to improve transportation in a country known for treacherous roads. Moreover, we got some insight into the tedious journey that hundreds of Tharu people must make when they screen positive at their local health posts, albeit without the use of new, AC-equipped cars. These individuals would need to lose their day’s wage to travel to the hospital and receive confirmatory testing. Those found to have SCD would need to make this trip every few months to receive vital medications that are often in short-supply.
Treatment is covered by the government, however as medications are not produced within the country itself, they need to be purchased centrally and distributed among the few designated hospitals in Nepal. Thus far, the government has not made it a priority to ensure hospitals are well equipped for the amount of patients requiring this medication. In addition, there are longstanding issues with availability and regulation of blood transfusions, which are in some cases life-saving for sickle cell patients. Bone marrow transplants are currently not a feasible option for most patients in Nepal as there is only one doctor that can perform the procedure. With such large gaps in effective care, our team made a point to speak with healthcare professionals to understand more about the situation and how we can work with them to foster change.
Arriving at the Ghorahi Hospital, we walked past lines of people in the foyer waiting to be directed for care. The CP staff explained to us that people travel from all over the Dang region to see a doctor, but the quality of care is sorely lacking at times. Patients are often told to come back another day, doctors do not care to explain treatment plans, and people are forced to turn to alternative services that are private or in India. Only those without other options or financial means come to Ghorahi Hospital. Despite its large size, the health institution lacks some of the basic infrastructure that we’ve become accustomed to living in Canada. Due to the lack of computers and an electronic medical record system, patients are responsible for bringing in their own health records on paper and there is very little data on disease prevalence, mortality, and morbidity.
We were fortunate to meet with and shadow Dr. Jit Narayan Yadav, a senior physician with a passion and special interest for SCD. With the loud sounds of a jackhammer punctuating the otherwise quiet ward, we walked amongst the 20 bare beds full of patients, with no dividers or screens for privacy between them. The doctor excitedly explained to us the kinds of cases he sees in the general medicine ward and his approach to medicine. In the meeting afterwards, we learned about his research into the efficacy of hydroxyurea treatment, barriers to patient care, and future directions for work in SCD. This research could be the catalyst for change, as he hopes the data he collects could be used to lobby government officials to change national policy and to correct the aforementioned treatment supply issue. We all left Ghorahi Hospital feeling inspired and determined to keep working with the people here to foster change.
Following our educational sessions with various mothers’ groups, the Creating Possibilities staff organized a bus to pick up people from the villages we visited and brought them to the local health post to get screened for sickle cell disease. Our team waited at Unako house while the bus picked up the villagers and to our (happy) surprise, the bus was so packed with people wanting to get screened that there was no more room for us! We were glad to see that our educational sessions had encouraged people to get screened, and gladly took our usual form of transportation instead, the tuk tuks. On our way to the health post, one of our tuk tuks got pulled over by the police because we had two CP workers sitting along with the driver in the front seat (which only seats one)! The two CP workers were extremely amused by the situation and we were able to keep going after paying a very small fine of 500 rupees ($5 USD) to the police.
The health post we visited that day opened its lab 6 months ago, and screening since then had been relatively slow, with only 30 people screened over 6 months. However, on the day that we visited the health post alone, 111 people were screened, of which 13 screened positive. We were thrilled to see the significant impact that the educational modules had on screening rates, as we saw many women from the educational sessions at the screening day. These women also recruited many members of their community via word of mouth. It was extremely inspiring to see these women advocating for their community’s health as a result of the information they had received in the days prior.
The actual set-up of the screening day was very efficient, with one team of female health workers responsible for drawing blood and another team for analyzing the samples. Despite the excellent organization, we were still somewhat surprised by the set-up itself – blood was drawn outdoors in a small corridor between two buildings, with patients sitting on plastic chairs and the workers using rubber tubing for tourniquets. The lab was quite minimal and consisted of two microscopes and basic lab equipment, including test tubes and slides. We were amazed by the workers’ ability to make do with what they had in a sterile and functional manner. Our team had the chance to look at a positive screen under the microscope, and we all geeked out over how clearly sickled the red blood cells were.
We learned from the CP workers that the cost of screening is 100 rupees (around $1 USD), which is subsidized by CP (largely with the help of our team’s fundraising) on mass screening days. If individuals are unable to make it to the mass screening days, they must pay the 100 rupees themselves to get screened on a different day. Those that screen positive are phoned by CP, picked up and brought to Ghorahi hospital 1.5 hours away for a diagnostic test, which costs 2000 rupees (approx. $20 USD). The overall cost of this whole process for someone who screens positive to get a confirmatory diagnosis, including food and transportation, is around 5000-6000 rupees ($50-60 USD). The Tharu population in this farming region not only have to find a way to cover these costs, but this diagnostic process also means taking time away from their work and their families, which is a major barrier to this population. Due to the support of our generous donors, CP now has a reserve fund available to pay for this whole process for a limited number of individuals, however this cannot fully meet the needs of the local population.
We were inspired to see what a big impact a community effort like this can have on the region’s health, and we hope that our continuing work with CP can allow mass screening days to occur more frequently. It was amazing to see the local women taking initiative for their communities’ health, which reinforced the power that the mothers’ groups can hold. These mothers play a huge role in their children’s health as many of the men in the community are away for most of the year working to support their families. Despite this, a few men attended the educational modules along with the mothers’ groups, which was encouraging as we stressed the importance of screening of both men and women for the purpose of family planning. We hope to continue these efforts in the future to work towards our ultimate goal of nationwide neonatal screening for SCD.
One of our roles while in Dang was to meet with various local Mothers’ Groups to facilitate the delivery of educational modules about sickle cell disease (SCD). Mothers’ Groups are preformed groups supported by Her International and CP Nepal. This network of women serves to not only empower women, but also strengthen the communities and households that they come from. There are currently 32 groups consisting of 980 mothers from the Dang region of Nepal. These monthly meetings teach women skills to become self-reliant on a personal and financial level. The mothers’ groups facilitate microcredit loans, which give these women the previously impossible opportunity to start their own businesses. Furthermore, these meetings serve as a place for public awareness sessions on various topics, such as domestic abuse, mental health, how to vote, and since our team’s inception, sickle cell disease (SCD).
The first Mothers’ Group meeting was located in a small village about an hour away from our hotel in Lamahi. We arrived at the meeting place early, and had the chance to get a tour of a few nearby homes. We learned that the walls were constructed from a hardy mixture of dung, rice husks, and mud, with bamboo beams lining the inside, serving as supports. The roofs of the homes were either tin, or made from a similar mud-mixture, with straw coating on the outside. The former is the cheaper and more readily available option, while the latter provides much needed insulation against the sweltering heat of Dang.
While the homes were modest in size, every inch of space was utilized. The home we spent the most time in was composed of a bedroom and a cooking room. Upon walking into the cooking room, we were immediately confronted with two human-height clay pots, used for storing rice and other grains. Continuing further into the room, we saw various cooking utensils and gadgets lining the walls. The fire burning “stove” was set against the far wall. While wood and other plants are the preferable fuel of choice, when supplies are low, human dung becomes a cheap and plentiful option. The walls of the room were stained with soot all the way up to the ceiling, after years of withstanding the smoke produced as a byproduct of cooking meals for the family to enjoy.
After the tour of the homes was complete, most of the mothers had arrived. We were warmly greeted in the classic Nepalese manner, with red dye smeared on our foreheads and garlands. The women had also crafted beautiful clay pots, creatively decorated with beads, corn, and other colourful crops. Some of the pots spelled out messages, such as “welcome”, while others had purely artistic designs. The women carried these clay pots on their heads, without the aid of their hands or other supports. They encouraged us to try the same, but as we learned, this carrying method is NOT as easy as it looks. Shockingly, there were no clay pot casualties on the day, despite a few shaAaAaky balancing attempts.
After our elaborate welcome, and all ~40 of the mothers had arrived, it was time to deliver the educational modules. We were accompanied by Female Community Health Volunteers (FCHV) and CP staff, both of whom had been trained in the delivery of these SCD modules. These volunteers reach out to various communities in the Dang district to promote health education. In providing this service, they are role models for women in their communities, and will likely inspire women to effect positive change. We brought a number of posters we had created to aid the presentation, as well as educational pamphlets on SCD to hand out to the women afterwards.
Before the presentation began, each woman filled out a pre-module survey assessing their understanding of SCD and potential screening history. This process was slightly chaotic, but with the help of CP staff, instructions were clearly delivered, and each woman completed the survey.
The FCHVs and CP staff then went on to deliver an enticing, interactive module we had created on SCD in Tharu. The mothers appeared engaged, and asked plenty of questions.
After the module was complete, we administered similar post-module surveys to each mother. It was great seeing them critically think and apply what they had just learned. Once everyone was finished, we gathered all the forms, thanked the women profusely for taking the time to learn about SCD, uttered innumerable “Namaste’s”, and hopped into our tuk tuks to head back to Unako House.
At Unako House, our team went to work, compiling and coding all the data we had just gathered. We were all extremely encouraged by the improvement the women showed on their surveys, and their indicated newfound willingness to get themselves and their families screened! Based on our first glance at the data, the mothers showed great improvements in their understanding of SCD after hearing the module. We look forward to further analyzing the data to assess the effectiveness of our knowledge translation. We hope that this analysis will help us to optimize the consistency and effectiveness of our module delivery going forward.
All in all, it was a joy to see these women take ownership of their own education and health. We were humbled by how welcoming and appreciative they were, and inspired to continue to advocating for the health and well-being of their communities.
The main focus of the UBC SCD team’s work this year has been to increase screening and awareness of sickle cell disease through education. To work towards this goal, we visited two local schools in Dang along with Creating Possibilities staff to teach educational modules about sickle cell disease as well as basic hand hygiene.
These school visits were very highly anticipated as we were all very excited to interact with the local children. Proudly wearing our UBC sickle cell t-shirts, fuelled by poori and curry, and equipped with the educational posters we made on our first day in Dang, we made our way onto our tuk-tuks for the trip to the local schools. The travel time was about 45 minutes, and we got to see more of the Lamahi landscape on the way.
When we arrived at the first school, we were immediately greeted by wide eyes filled with excitement, and ear-to-ear smiles. We were warmly welcomed by the school principal and teachers. After short introductions, we split off into two groups of three UBC students along with a CP translator, and we were off.
A buzz of excitement filled the room as soon as we walked in. With our posters in tow, we started our presentations. Some of the students understood basic English, but we definitely could not have accomplished our goals for the day without the help of our translators. We were pleasantly surprised to see how many female students there were in the classrooms, and also thought it was interesting that boys and girls sat on opposite sides of the classroom.
We were very impressed by how passionate and proficient the CP staff are in the knowledge translation of sickle cell disease. The translators did an amazing job of making the session interactive and engaging for the children with their charisma. Based on the questions we asked the class at the end, it was clear that our message had gotten across and we were impressed by their understanding of complicated concepts. To conclude our presentation, we taught the kids about proper hand washing technique, and we also taught the kids a few English phrases with the song, “head, and shoulders, knees and toes.” The reactions from the students were priceless!
At the end of the modules, we had the opportunity to speak with the principal and some of the teachers to learn more about the local educational system. The English teacher explained that in this area, there are both private schools (which are quite costly) and government schools, which are “free” to students. In reality, these government schools are not completely free as students must provide their own supplies and uniforms, which many marginalized families simply cannot afford. Furthermore, a shortage of government-employed teachers obligates some government schools to hire additional teachers privately, incurring extra costs that families then have to pay in order to enrol their children. These hidden costs are prohibitive for many families resulting in alarming school dropout rates in this region.
After teaching at the first school, we visited a local health post, where the initial screening test for sickle cell disease is conducted. We were warmly greeted by the local doctor and the lab assistants who showed us the patient rooms and the lab facilities for analyzing blood samples under the microscope. CP Nepal is currently helping this health post purchase additional lab supplies to increase its screening capacity. Once patients screen positive at this health post, they must travel to Ghorahi regional hospital for a confirmatory diagnostic test.
Adjacent to the health post we visited was the regional municipality office. This is where patients go to receive their government letter of recommendation after being formally diagnosed with sickle cell disease at Ghorahi hospital. With this letter, patients can receive government subsidized medication for sickle cell disease. We were once again warmly received at this office, this time by local government officials, and we spoke with them about the goal of our project, which is to increase awareness and screening for sickle cell disease.
By the time we finished this meeting, it was already close to 2 pm, so we quickly jetted off in our tuk-tuks to the second school, which is supported by CP Nepal. There, we were happily accepted the refreshments they offered us, as we were all feeling the 40ºC heat. The kids at the second school was just as excited as the first, and with our stomachs full, we enthusiastically taught our educational modules to the students and teachers.
This was probably one of our most packed days as of yet, and by the time the evening rolled around, we quickly said our goodbyes after dinner, and returned to our rooms for a night’s rest – grateful for and satisfied by the day of hard work and humbled by the entire experience.
A short flight followed by a Jeep ride brought us to the Dang Deukhuri District of Nepal, a lowland region close to the border with India. Dang is home to over half a million people, the majority of whom are ethnically Tharu. We came to Nepal to work specifically with this marginalized indigenous group who have a survival advantage in malaria endemic regions due to the high prevalence of the sickle cell gene in their population.
On our first day in Dang, we bumped along the dirt and gravel roads on our packed tuk-tuks to the Unako House. The landscape here consists of an eclectic mix of brightly coloured homes, straw and mud huts, animals, and a sea of farmland surrounded by mountains. We felt a sense of tranquility as we rumbled past schoolchildren in their uniforms, and an abundance of sheep, goats, and buffalo (but most of all, dust!!!). Despite the heat (40 degrees!), we were all so excited to begin our work.
When we arrived at the bright yellow Unako House, we were warmly welcomed by the staff of Creating Possibilities (CP). Unako House, which means “a place for her”, serves as a community space for educational and entrepreneurship programs to empower mothers’ groups, young girls, and previously bonded women. As we walked in, we each received a tika on our foreheads and a colourful flower garland to wear, and all of us promptly managed to either smudge or sweat it off. Tika, a red-coloured powder, is given as a blessing during celebrations or processions.
We spent the majority of the day prepping for the educational modules by hand-making posters to illustrate the complexities of sickle cell disease. While most of us grew up accustomed to arts and crafts, we had to learn on the fly to write Nepali characters and use tape to manually laminate posters – this turned into a highly frustrating yet somehow rewarding process!
The incredible CP team put together a last minute celebration for Iulia’s 23rd birthday that consisted of cake, chura (bangles) for the girls, and tie-dyed Nike bandanas for the boys. While Iulia was pleasantly surprised by this warm gesture, she was even more shocked (and amused) when she realized that the local customs required everyone to feed her cake and promptly smear her face with the dessert. Our team was very enthusiastic to join in on this fun tradition!
It was so great spending the whole day at the Unako House, and we already feel like part of the family!
The 2019 UBC Sickle Cell team all arrived in Nepal (via a variety of routes) by the evening of May 5th, and our first full day in Kathmandu was jam-packed! Due to jet lag, we all got up at 4:30am and ran to the Swayambhunath Buddhist temple overlooking the city to see the sunrise. The stairs up to the temple were killer but the view and the experience were well worth it. At that hour, we were the only tourists around, and it was very interesting seeing the locals engaging in group prayer and giving offerings. We saw many locals spinning the prayer wheels and saying a mantra as they walked past them, a custom which was new to many of us. The prayer wheels are used to accumulate good karma and rid oneself of bad karma. We learned that the prayer wheels must be spun in a clockwise direction because the mantras on them are written in the direction of the movement of the sun across the sky. Amar unfortunately learned this too late, as he had spun the prayer wheels in the other direction the day prior, which led to a scolding by a local. Lisa conquered her fear of monkeys and birds that morning at the temple, as many were in attendance.
Later that day, we visited the head office of Creating Possibilities Nepal, one of our partner organizations. CP Nepal supports, educates and empowers at-risk and marginalized youth and women. During our visit, we had the chance to meet the youth who live at the office. We were moved by the loving family environment and how welcoming they were when we arrived. We spent the day getting to know more about our partner organization, as well as talking to the students. These Nepali children were all orphaned or abandoned, however with the help of CP Nepal, they are now able to receive quality education and guidance. Hearing about these children’s hardships and their strength, resilience and passion despite all they’ve endured was inspiring to us all.
We then got a tour around Kathmandu by one of the students at CP Nepal. We rode the local bus to the Kathmandu Dunbar Square, where all of the locals shop. The “bus” was actually a mini-van, which carried more people than any of us thought possible. We were definitely not used to having so little personal space, but it was an extremely interesting and amusing local transport experience. Our CP friend then took us to a tiny local restaurant (the doorways couldn’t have been any taller than 4 feet), and he ordered us typical Nepali dishes including choila with beaten rice, and Nepali pancake (called “baara”) with some local rice wine (“raksi”). We are extremely humbled and grateful to have received such an amazing welcome on our first day in Nepal, and are very excited to work with all of the amazing staff at CP Nepal.