It was a fine morning, like most summer days, but I remember this morning more clearly. I woke up to my alarm, finished my morning routine, and headed to work. As usual, many patients waited outside my dental office, and as my assistant called their names one by one, I began to see them.
After I had finished with a few patients, I noticed a young lady – probably in her late twenties, with a thin build and unkempt appearance – standing by herself and looking lonely. She complained of severe pain in her lower jaw. After examining her, I was shocked to discover the pain was non-dental in origin. It was from blunt trauma. She was unwilling to tell me her story initially, but after encouragement, she burst into tears and described her husband’s physical abuse. Thankfully, her physical pain was not severe. But internally there lay a deep pain, torturing her every day.
I was emotionally touched by her story. I could help rid her of the external pain, but could not do the same for her excruciating internal pain. I compared my life with hers: we were about the same age, and lived in the same country. Other than that, there was an enormous contrast. She was already a mother of five; she was fully dependent on her husband financially. She was not empowered to change her situation. I imagined myself standing on one side of a bridge, where I have the basic rights and capabilities to live my life how I choose. On the other side stood this woman, who was suffering, but saw no alternatives. I often wonder, especially after encountering stories like hers, is my life so different from this woman’s simply because I come from the city, or received an education?
Her story is all-too common in rural Nepal, where each day women are physically, mentally and emotionally abused by husbands, in-laws, relatives and others. Underlying causes of this gender-based violence include poverty, illiteracy, lack of economic empowerment, and patriarchal values. Today in rural Nepal, few women are able to realize their basic rights. Social boundaries and cultural norms prohibit women from speaking out against those who abuse them. Families try to resolve domestic conflicts in private, but the decision is almost always the same: that the woman must continue living with her abusive husband or family.
Early marriages and polygamy are manifestations of the patriarchal society in rural Nepal. Most girls drop out of school before the 10th grade and are pressured or forced to marry by age 14 or 15. Men are regarded as the “earning hands” for families. At the same time, women’s hard work in the community goes unrecognized and undervalued. In this setting, women lack empowerment. In addition, increased fertility rates, in combination with poor access to antenatal and emergency obstetrics service, threaten women’s health and contribute to high maternal mortality in rural Nepal.
In addition to the economic and health disparities, cultural practices such as chaupadi also worsen women’s lives. Chaupadi tradition regards menstruation as impure. Women are required to live in cowsheds or huts while they are menstruating. This practice is very dangerous, and leads to exposure to cold weather, wild animals, and toxic inhalation in poorly ventilated sheds. Within the last year, two young women died due to chaupadi practice. Both incidents took place in the rural district of Accham, where I live and work.
It has been 3 years since I first came to Achham. Working in such an underserved area has been one of the most important experiences of my life. I feel grateful to be part of an organization, Possible, which partners with the government to provide free health services in the district. I am happy to have witnessed the tremendous impact of the health services we provide. And yet, I have seen our contributions fall short when it comes to increasing women’s empowerment. In Nepal, many people worship the goddesses Lakshmi, Saraswati, and Parvati, as pathways to prosperity, knowledge and success. But while these goddesses – symbols of female power – are worshipped, the freedom and dignity of women in the community are neglected.
So what comes next in rural Nepal?
Women’s rights and gender equity are seen as fundamental to societal progress, and are represented in the United Nation’s Sustainable Development Goals (2015-2030). A commitment to gender equity is needed to help bring changes in rural Nepal.
At Possible, we recently formed a Gender Equity Committee, an example of how voices can be raised to promote justice for women. I take my membership in the committee to be a great responsibility, and it gives me a voice to help women in the region. Through this committee, doctors, nurses, therapists, psychologists and community health workers are collaborating on policy interventions and strategies to promote women’s rights.
Community health workers are an especially promising resource to build gender equity in rural Nepal. They are closely connected to the communities where they live and work, and have insights into understanding behaviors and attitudes around gender norms.
The government of Nepal, in collaboration with national and international organizations, must play a role to promote gender equity by implementing programs aiming to improve women’s health. For women who are victims of domestic violence, resources need to be available to provide shelter and economic support. The criminal justice system needs to support women who come forward, and to take domestic violence investigation seriously. If such an environment were present, women living in rural Nepal could have a greater chance of being happy and healthy.
Being a female doctor in a privileged position of society, I feel in my heart that I have the ability to help women achieve their basic rights through advocacy and service. The Gender Equity Committee has been the initial medium through which I can generate and provide my insights to communities. I value the objectives of the Gender Equity Committee which can be utilized for the betterment of women living in rural areas. Visits to the communities and implementation of focus group discussions on gender rights and equity are the next steps which I plan to endeavor in the future. The start has begun from the organization, which would eventually expand to the local, regional and national level as we plan to work as a team. Cultural and traditional practices are always deeply rooted within society, but if every stakeholder knows the values of equity and justice, there can be a change. There can definitely be a remarkable change!
Viet Nguyen, MD, MPH, HEAL Fellow 2017 – 2019.
Growing up in rural Nepal, Dharma never thought that one day he would be inviting menstruating women into his home. But the path to being a true agent of change isn’t always what you initially envision. Dharma originally wanted to be a doctor, but due to a lack of time and resources, he studied business and commerce, thinking he could instead work as a banker. Although it was never a goal of his to return to his village in the rural district of Achham, he did so to help care for his elderly parents. Despite limited employment opportunities in Achham, Dharma managed to find some work as an interpreter, which eventually connected him to the non-profit world. He was able to work on HIV anti-stigma campaigns, prevention of maternal to child transmission programs, and enjoyed being involved in partnerships that allowed him to be impactful in healthcare delivery, a passion he had shelved before he even started.
Now, a Partnerships Associate at Possible Health, Dharma spends part of his time producing content for donors and capturing the meaningful work that Possible has done in the community, which is how I first met Dharma, who would sit across from me at work. This works suits him well, as he carries an optimistic demeanor and a confidence to view others in an extraordinary way. His work requires keen observation, and Dharma feels fortunate to be working in health care because he is able to bear witness to how Possible has helped his village and other villages in the district. It is through his work that he realized the importance of understanding the context of whom you are trying to serve.
Despite being from Achham, Dharma is often viewed by his fellow villagers as somewhat of an outsider, “because I am educated and went away to Kathmandu.” But he has been working and living in his village for the last decade since leaving for school, and the reputation of Possible Health as an important presence to the Achhami people has also strengthened over the last decade. “Even though I’m from here,” he explains, “I never knew about the culture in my village.” It is not until he returned and spent time in Achham – working in the villages, interviewing patients – that he learned about the culture of stigma and violence against women. Dharma is referring specifically to the practice of Chhaupadi, which has recently been featured in the global news media.
Defined as the practice of banishing menstruating women to unsafe huts or sheds due to cultural beliefs that surround uncleanliness and unholiness, Chhaupadi has been made punishable by law in Nepal, within recent months. Many villages in rural areas have been declared, “shedless,” suggesting they are entirely free of this custom; however, Dharma has yet to see this being fully practiced. “An international NGO came into some villages and destroyed all the sheds,” he mentions, with a grave look in his eyes. But the beliefs of the people, including the women and girls who are banished, keep the villages from being truly shedless, despite the fact that Chhaupadi has been banned by the Nepali Supreme Court for many years. “They just reconstruct the sheds,” he reports with frustration.
One of Dharma’s projects involves addressing this disastrous example of gender discrimination. He is part of Possible’s Gender Equity Committee to work on this progressive, bold, but necessary mission. It’s one thing to go to your work place and engage in advocacy work, but was Dharma practicing it in all aspects of his life? “I realized, I’m doing all this work, and saying all these things at Possible, but was I living it? I realized, it starts with me.” At a village gathering during a popular Nepali holiday, Dharma had the microphone and was singing a song. I can easily imagine him, his usual gregarious and cheerful self, with matching boyish charm, entertaining the crowd. “I enjoy singing. They enjoyed it. But then I kept the mic and made an announcement.” Dharma told the entire village that he was against the practice of Chhaupadi, and that if women were banished from their homes during menstruation, they were more than welcome to his own home. He told them, “You can come to my home and they will all see that nothing bad will happen.” This resulted in a largely unsupportive response from both men and women. “Most of them were silent. Some asked if I was drunk. I was not.”
Dharma describes this practice as propagated by humans, and not by facts. “I was raised watching my sister go to the shed, because it was what we knew. But we get older, and we learn new things, and we must change. Just because older generations do these things, doesn’t mean we have to do these things.” Since he made the announcement to his village, one woman who had been banished during menstruation, was seen talking with Dharma outside of his home. And despite a few stares, he has yet to see how this will pan out. “She was too scared to come in my home because she can’t even go in her own home.”
Although Dharma realizes that the resistance to his progressive offer to menstruating women will take time to dismantle, he is more than willing to stand up for what he believes is the right thing to do. He is in a unique position of both being from the community he serves, but also working as an outsider. He understands that his privilege of being an educated male working for a non-profit allows him the comforts of avoiding complete ostracization from the community. And he understands the roles that hierarchies of caste, power, and privilege play into his ability to resist Chhaupadi both in name and in practice. However, he remains hopeful that Chhaupadi will eventually become obsolete.
Dharma’s story highlights a few factors that will start to slowly contribute to a cultural shift in practice. It includes being flexible, practicing honest self-reflection, and fully understanding the cultural context and barriers that these women face. This is a concept that has proved difficult even for someone who is from the community he is trying to impact, let alone a group of well-intended outsiders simply destroying all Chhaupadi sheds in a village.
And perhaps, our roles in the global health movement should be more focused on people, like Dharma, who are at the margins of being both an insider and an outsider, in order to be more effective in fostering change. As I’ve learned from Dharma and others like him, change involves truly recognizing the true root causes of a deeply-seated cultural practice in their actual context and not in a vacuum. It involves leverage, patience, and being comfortable with the uncomfortable.
Change is very hard, and doesn’t happen quickly, but Dharma remains optimistic despite many setbacks. “We just need time,” he insists. “Change will come.”
By Dr. Yogesh Jain, Co-Founder of Jan Swasthya Sahyog and Dr. Anup Agarwal, HEAL Fellow 2017 – 2019.
Poor implementation of routine immunisation programmes has led to continued outbreaks of the disease. While the initial immunisation is done, follow-up booster shots are often missed.
Eight weeks ago, Payal*, a ten-year-old girl, came to the emergency room at Jan Swasthya Sahyog (JSS) or People’s Health Support Group in Bilaspur in Chhattisgarh with fever and neck pain. We diagnosed her with diphtheria and immediately provided her with the appropriate treatment, including antibiotics and anti-diphtheritic antiserum (ADS). However, despite our best efforts, her condition worsened due to heart and kidney failure, and she died.
Unfortunately, Payal was not the only child who suffered from diphtheria during a recent outbreak. In the last two months, 23 patients have been diagnosed with diphtheria in Bilaspur. Of these, we have treated nine patients at JSS, seven of whom were from a single village – Ghonghadih – and one each from the nearby villages of Beltookri and Ajaypur. Only 14 of the 23 children survived.
There have been reports on a diphtheria outbreak in 2017 from multiple states, including Karnataka, Kerala, Uttar Pradesh, Telangana and Bihar. We interviewed multiple vendors who sell ADS, the medication essential for diphtheria treatment, and learnt that there is demand for ADS across India. In fact, the demand has been constant over the last few years, which underscores the fact that this an ongoing problem. According to the WHO, there were 7,097 reported cases of diphtheria all over the world in 2016, out of which 3,380 cases were in India. Our neighbours Nepal, Bangladesh and Pakistan reported 140, two and 12 cases respectively.
Diphtheria is a communicable disease with serious health consequences, including heart failure, nerve damage and death in at least 10% of patients, as in Payal’s case. A diphtheria vaccine has been available for the last 80 years with remarkable efficacy at an affordable cost. It is tragic that our children continue to die from this vaccine-preventable disease even today.
Three different government programmes in India are responsible for making sure children like Payal get vaccines. First is the Universal Immunisation Programme (UIP) of the government of India, started in 1985. By 1990, all districts were covered under the scheme. But in 2014, despite being operational for 30 years, the UIP had been able to vaccinate only 65% of children in their first year of life. So in order to invigorate and strengthen the programme and improve immunisation coverage, the government started a novel initiative in December 2014 called Mission Indradhanush. As per the official website, the goal of Mission Indradhanush is to ensure full immunisation with all available vaccines for children up to two years of age and pregnant women. The third programme is the Rashtriya Bal Swasthya Karyakram (RSBK) from the Ministry of Health and Family Welfare. It aims to put in place child health screening and early intervention services, a systematic approach to early identification which then goes on to provide care, support and treatment.
As per the UIP, the diphtheria vaccination is done at six weeks, ten weeks and 14 weeks of age. Since this series is inadequate to provide immunity beyond early childhood, booster doses are given at 16-24 months of age and 5-6 years of age. The UIP does not follow the recommended WHO guidelines, nor the US-based Advisory Committee on Immunization Practices (ACIP) guidelines. The WHO recommends a primary series of three vaccines starting at six weeks of age and ending before six months of age. The WHO also recommends three booster doses at 12-23 months, 4-7 years and 9-15 years of age. The UIP does not include the WHO-recommended third booster in the current vaccination schedule. It also does not include the diphtheria booster doses at ten-year intervals which have been recommended by the ACIP. The state of diphtheria immunisation in India, especially the booster doses, is poor. According to national-level surveys, the coverage of three primary diphtheria vaccines improved from 55.1% (1998-1999) to a still unacceptable 78.4% (2015-2016). Neither these national-level studies nor the WHO data estimate the coverage of the diphtheria second booster in India. An independent study done in Hyderabad further confirmed the poor coverage, showing rates of coverage of first and second booster immunisation was 60% and 36% respectively.
In order to fill this void in immunisation coverage left by the UIP, Mission Indradhanush was started. Data show that since the initiation of Mission Indradhanush, vaccination rates among children below two years of age have improved by 6-7% every year. However, because of its design, it still missed the critical group of older children requiring boosters, like Payal.
Explaining the outbreak
We interviewed a few health workers in Bilaspur to understand the situation on the field on the diphtheria vaccination. The health workers, who are directly involved in routine immunisations, were confused about the immunisation policies for children above two years of age. They said that around six years ago, the RBSK yojana had started in Chhattisgarh. The routine health workers assumed that this RBSK team, which is responsible for screening various diseases, will be vaccinating school-going children, even though immunisation is not within the purview of the RBSK team. As a result, none of the health workers had administered the recommended second booster for diphtheria in the last six years.
The diphtheria outbreak in Bilaspur poses two intellectual questions for a public health physician. First, out of the nine patients seen at our hospital, only one child was less than five years of age, whereas historically diphtheria affects children less than five years old. The second question is, how did this outbreak spread? There were only five patients in the first eight weeks, with periods of no cases for up to two weeks within that time.
Poor coverage of the immunisation booster doses is important in understanding the demography of children admitted with diphtheria at JSS. Since booster doses of anti-diphtheria vaccine were not provided, older children were unprotected from diphtheria and thus the percentage of patients who had diphtheria who were more than five years of age has increased significantly.
The most likely explanation for the spread of the outbreak, without cases being reported, is asymptomatic carrier adults in the community. According to a WHO report, in 2016, of the 1,530 cases seen in Bihar, Uttar Pradesh, Kerala and Haryana only 20% patients were less than five years of age. In Kerala, 533 cases were reported in 2016, of which 39 patients were older than 45 years, highlighting that diphtheria infects patients of all ages. Even in Bilaspur, we have seen several adults in this outbreak with tell-tale sequelae of diphtheria, such as the paralysis of palatal muscles leading to swallowing difficulties. These adult illnesses are a consequence of them being unprotected against diphtheria because the effect of childhood vaccines has waned.
The way forward
Every time a child dies of a vaccine-preventable disease such as diphtheria, we as a society and a nation fail them. Based on our experiences in Bilaspur, interactions with health workers and on the basis of work as public health physicians, we would like to propose the following solutions to eliminate diphtheria in India.
First, while the incidence of diphtheria has reduced in children less than five years of age, it has increased in children more than five years of age. The government and concerned officials should make it a priority to improve the administration of booster doses. Mission Indradhanush has been successful in improving the vaccination rates of children less than two years of age by covering additional 6-7% children every year. We strongly recommend that Mission Indradhanush should broaden its coverage to compulsorily include children up to six years of age.
Second, the UIP in India has limited diphtheria vaccination only up to five years of age. There is ample data to suggest that diphtheria affects all age groups, as seen during outbreaks in Kerala. The ACIP recommends a diphtheria vaccine booster every ten years, as immunity wanes over time, but the UIP in India has not adopted this guideline despite large-scale outbreaks. The UIP should be revised to include a diphtheria booster every ten years for adults. This would help decrease the pool of asymptomatic carrier adults.
If we don’t implement our routine immunisation programme better and don’t make efforts to protect our adolescents and adults, we should be prepared to live with diphtheria and its unfortunate outcomes.
* Name changed.
Anup Agarwal and Yogesh Jain are physicians with Jan Swasthya Sahyog.
Dr. Yogesh Jain is the Co-Founder of Jan Swasthya Sahyog and HEAL Site Advisor. Dr. Gajanan Phutke is HEAL Fellow 2017 – 2019 working at JSS.
Even though 1% of people require palliative and end-of-life care in low-resource situations, it remains an uncharted arena. Yet it is as important as curative care to alleviate suffering. Palliative care is not only a need in cancer and HIV disease; but is needed in a diverse group of illnesses ranging from tuberculosis, renal failures, paraplegia to chronic lung diseases. In a lower resource setting, the gaps in palliation may be the need for more technology and interventions or more healthcare professionals. Thus, palliative care will initially mean ensuring that life-prolonging treatment that most patients do not get is ensured to them. It is morally unacceptable to focus on comfort care as an alternative to advocating for patients’ rights for appropriate life-prolonging treatments. If organised well and standard protocols are developed to support health workers, appropriate care can be provided for all people. Ethical principles of autonomy, nonmaleficence and benevolence will have to guide this development. We will have to prioritise for high value care which means choosing cheaper alternatives that are just as effective as more expensive diagnostic or therapeutic modalities. There is a need to settle the priorities between palliative and disease-modifying or curative treatments. Major roadblocks that limit access of the rural poor to palliative care relate mainly to the misconceptions among policy-makers and physicians, large gaps in health worker training and cultural mindsets of care-providers. A specific example of misplaced policies and regulations is the poor availability of opiates, which can make end-of-life care so much more dignified in illnesses that have chronic pain or breathlessness. A three-tiered structure is proposed with a central palliative care unit which will oversee several physicians and specially trained nurses for noncommunicable diseases, who will oversee primary healthcare centre-based nurses, who in turn, will oversee village health workers.
As I sat writing my application for the HEAL site exchange opportunity, one of the first sites that jumped into my mind was Possible Health in faraway Nepal. At that moment, all I could think about was how distinct both Liberia and Nepal were in terms of geographical location and culture. However, I could also sense some similarities that the two nations share in terms of calamities. Both countries were previously ravaged by brutal civil crises and disasters. Nepal experienced a devastating earthquake in 2015 while Liberia was hit by one of the most shattering Ebola outbreaks the world has ever recorded between 2014 and 2015, leaving an already fragile health system to care for its myriad Ebola afflicted citizens.
While planning the journey, I tried to establish the relevance of the skills, knowledge, and experience that I would gain from this exchange program to my own work. I identified lessons that could be learned from both the diversities and similarities between these two countries, and how I could use what I hoped to learn to navigate my way throughout the visit. Paramount on my agenda was gaining insight into the implementation of the community health programs, and applying this knowledge to improve health outcomes in our target population. Having determined what I hoped to achieve during this visit, I awaited a favorable response from HEAL, which eventually arrived to my delight.
When all was set, I began from Liberia on a warm April evening on the long road toAchham, one of Possible Health’s oldest sites in Nepal, a journey which took me several days, traveling both by air and land. Throughout my stay in Achham, one of the most remote districts in the area, I was very much amazed by the age-old culture of respect everyone exhibited towards one another, most especially the elderly. I was even told a story about one of the women who works at a local cafeteria, who was unknown to everyone by her name because she was called “Dedee” which means “big sister” in the local language.
The days went by slowly in the small, hilly, and quiet town of Sanfee Bagar in Achham district. One day, I accompanied one of the community health nurses and a community health worker on a routine home visit in a nearby community. The community health services run by Possible Health are integrated with the medical services, which allows for patients with chronic disease to be enrolled in a system of continuous follow-up by the community health workers after discharge from the hospital. During the home visit, I sat and watched in awe as the community health worker patiently sought the consent of the patient to conduct the visit and professionally initiated all the necessary steps critical to a home visit. I remembered long afterward the key role the community health nurse also played during the routine household visit by assessing the patient’s blood pressure. I learned that the goal of the assessment was to ascertain whether the patient is either improving or deteriorating to inform timely intervention.
I thought about what a big difference it would make in our community health service delivery if our community health services supervisors (the equivalent of the community health nurses in Nepal) were empowered and equipped to provide such routine services to people in the last mile communities we serve. In remote parts of Liberia, countless women are unable to access timely family planning services because of the lack of available trained personnel to provide the initial basic services in the communities more than 5 kilometers from the health care facility. As we roll out the reproductive, maternal, and newborn component of the national curriculum, I can see no better time to empower and equip the community health services supervisors to provide such services as measuring baseline blood pressure for women who are candidates for combined oral contraceptive pills and conducting urine pregnancy testing to rule out pregnancy before the initiation of family planning services. These vital initial services will ultimately help promote increased family planning and decrease the incidence of unwanted pregnancies in women living in remote communities. During my visit to Accham, I saw the potential of the services provided by Possible Health to address some of the core issues associated with the unmet need for family planning in Liberia.
This visit provided me the opportunity to understand that while we work in different geographies, our work is rooted in similar values. It is moreover evident from my experience that such exchanges allow us to explore broader horizons, enabling us to cultivate new ideas that can be utilized to improve the overall quality of services we provide at our respective sites. It is indeed my hope that these incredibly valuable exchanges will be utilized by other colleagues with the goal of learning more generally from one another.
By. Drs. Aaron Price and Kevin Duan
Originally published in STATnews. HEAL Fellow Aaron Price and his colleague Kevin Duan write about the impact of Medicaid expansion on Native populations.
“…the Indian Health Service spent just $3,107 per person, whereas Medicaid spent $5,563, the Veterans Health Administration spent $7,036, and Medicare spent $11,910.”
Given the current political debate about healthcare coverage in the United States, the topic has been on the minds of many patients and providers, including mine.
I was one of the many providers who enthusiastically welcomed the Affordable Care Act‘s expansion of insurance coverage to millions of patients in the US. Despite the ACA bringing the uninsured rate to a historically low, about 9% of Americans remain uninsured, most of whom are members of low-income families.1 While we are still struggling to insure all Americans and at the same time are considering policy changes that would take insurance away from many, Mexico has achieved universal health insurance coverage with the implementation of Seguro Popular, a public insurance option.
However, in places like rural Chiapas, one of the poorest states in the nation, many barriers to care make the promise of true universal healthcare access difficult to achieve. Compañeros En Salud (CES), the organization I have worked with for the past six months, is committed to filling in these gaps between coverage and care.
One patient that highlighted the barriers to care in rural Chiapas was a 49-year-old woman pregnant with her ninth child. She received prenatal care at the CES clinic in Plan de la Libertad where I was working as a supervisor to the pasante (a physician completing the mandatory year of social service) in that community. This patient was severely anemic and, given her many prior births, had a high risk of complications including hemorrhage, which is the highest cause of maternal mortality worldwide.2 While lay midwives work with women in several communities, their experience and capacity is variable; in the case of an emergency in this rural setting, they often lack the materials and training needed to save the lives of a mother and her baby.
Under Seguro Popular, this patient should be able to deliver her baby in a hospital, which would greatly reduce her risk of complications. However, the reality is that for our patients, the journey to a hospital is blocked by often insurmountable barriers: lack of food for the patient and her family during their stay, few transportation options to a hospital many hours away, lack of funds to pay for lodging near the hospital prior to delivery, and mistrust of healthcare facilities due to historic mistreatment of women.
CES has worked hard to understand and overcome the many gaps that exist between health care coverage and true access to care. The Salud Materna (Maternal Health) program specifically addresses the barriers that exist for expectant mothers trying to reach maternity care through multiple interventions. The Salud Materna program provides vouchers for food and transportation for a patient and a support person, as well as free lodging in a maternal house attached to the hospital. They provide training in patient-centered, dignified health care to pasantes in an obstetric and perinatal nursing program to make patients’ birthing experiences positive. Finally, they support improved communication between providers in the community with those in the hospital.
CES is continually working to overcome barriers to care in the communities they serve in rural Chiapas, and have seen great success in terms of the number of women choosing to deliver in a hospital and being able to successfully travel there for delivery. While the barriers faced by patients in the communities CES serves highlight the fact that health insurance coverage does not equal healthcare access, universal health insurance is an important starting point that opens doors for patients. I hope that as our country continues to debate healthcare policy, we think critically about ways to increase health care insurance coverage as well as overcome barriers to improve access to care.
He was about 11 years old on his way home from school. I imagine what his day was like. He was maybe late for class. Perhaps, like most boys his age he might have been disruptive. Or maybe he was the studious type and he sat quietly in the corner trying to get every sum right. The end of the school day would have arrived and he would have eagerly grabbed his school things to head home as he had done every other day. He would get home, hopefully have a meal, do housework, then play until bedtime.
Today was different for him though. He never made it home. Instead his body laid on display on the side of the highway. His head in a pool of blood, the rest of his body still positioned on the motorbike he was riding on. Today, instead of making it home he became another statistic; another road fatality. There will likely be no news headlines of his death, instead only the tears of his family and the empty seat in class the next day.
Less than one month earlier a family was devastated. On their way home from burying their daughter who had died suddenly, the unimaginable occurred. The truck carrying countless mourning relatives overturned around a corner sending the almost 50 occupants spilling out of the open back. The deceased woman’s husband and several relatives died. Her 3 children were now orphans.
Unfortunately, stories like these are not as uncommon as they should be. In fact, over one million people die from road traffic injuries annually and 90% of these are in low- and middle- income countries. But why are all these accidents occurring? Why are the poor most vulnerable? It is not difficult to see. There is no need for scientists and analyses. One simply should spend a day in any low or middle income country and one will notice that poor road infrastructure, high speeds, poor vehicle standards and regulation of public transportation, lack of use of seatbelts and helmets all contribute to an environment which is ripe for disasters and fatalities. This is further complicated by lack of both public education and safer alternatives for the poor.
So, while the WHO 2015 Global status report on road safety showed through the use of complicated mathematical formulas that the number of road traffic deaths have plateaued, is enough being done? On the ground it sure does not seem that way. Perhaps there needs to be greater attention brought to the problem. Perhaps there needs to be further activation of all sectors including, health, government, law enforcement and education and they should be held accountable to ensure the risk factors that contribute to road fatalities be lowered. If not, then school boys dying on the side of the road will remain so commonplace that one merely slows down to look then continue on their way.
Brown, the color of your skin,
Still wearing your uniform,
White and green.
Red, the color of your blood,
Which should have been within,
But instead was spread thin,
On the black surface,
Which your head impacted with.
The rest of your body still in place.
White, the color of innocence,
That, you must have been,
While the white sheet hid the last of your suffering.
T.S.Augustine, MD. 16th January 2017. Dedicated to a young school boy that I saw die on the highway in Haiti from a motorcycle accident. R.I.P.
I lived in Los Angeles for several years and the Navajo Reservation is a mere 10 hour drive; I have never been. I have visited post-Soviet Armenia, the Himalayan region of Northern India, rural Ghana and pre- and post-earthquake Haiti; but I had never driven 10 hours to visit my neighbors. Now as a pediatrician in the HEAL Fellowship, I was asked to spend half the year on the Navajo Reservation, which I accepted with enthusiasm.
The last six months have, like most new experiences, proved enlightening. Each time I have the opportunity to bear witness to something wholly unknown to me, my world view evolves. Think of a time you were exposed to something entirely new and how it might have changed your perspective. It might seem I benefit the most from these experiences, but I have come to realize that to bear witness can be powerful if I share what I have seen. It allows me to educate others, as I have been educated by my Navajo neighbors. If I did nothing else as a physician on the reservation, bearing witness and telling part of their story is an important outcome, possibly the first actionable step towards bringing about change.
I feel both troubled and humbled here. It’s a special place that values tradition, but that didn’t stop the industrialized world from having an impact. For nearly 40 years, from the 1940s to the 1980s, unregulated mines extracted uranium from Navajo lands and the now-abandoned mines have led to uranium contamination of water, with potential adverse health consequences. Now must drive a distance to obtain potable water rather than drink potentially harmful tap water that contains uranium and other heavy metals. The first time I drove my 15 year old car to get water there was a storm; while the rain beat down, the cracks in the dimly lit, neglected roads filled with water, making the roads even more dangerous to drive. I had to laugh because I didn’t feel as if I was in the United States of America in that moment. All this for potable water!
I get to laugh because I am fortunate that my old car is fairly reliable and I have money to purchase potable water. Many living on the reservation do not have these same securities. Many don’t have the amenities that we assume all Americans have. Some do not have electricity, running water, electric heat, or indoor plumbing. They must chop their own wood to prepare for winter or pay for the wood when the nights get bitterly cold. When seeing my patients, I ask the children with severe constipation if they have an outhouse, believing it may be contributing to their medical condition; almost invariably the answer is yes.
A young girl came into the pediatric clinic with her mother and I sensed there might be social issues, which is not uncommon. I asked the mother to step out of the room; the 11 year old shared the events from her time in foster care, where for 6 months she was physically and emotionally abused by her foster brother and foster parents. Her eyes welled up but I was moved by how composed she remained while bravely telling her story. She was given a comfortable space to speak with a specialist who wanted to listen and offer comfort, which she appreciated.
I share this story not to make you feel sad, but to point out certain details. Her story depicts several striking gaps in our system for protecting children. From the pediatrician, to her social worker, to the school system, these gaps resulted in unnoticed foster abuse that lasted 6 months. While this system is extremely overwhelmed on the reservation, the problem is not unique. Many urban areas in the US are equally overwhelmed and inundated with child protective service referrals. Without placing blame on any one part of the system, this is just one example of how we, as a system, failed this child.
Another young girl, recently taken away from her mother by her grandmother due to neglect, arrived in the clinic for general pediatric care. Immediately it became clear that this 7 year old was the height of a 3 year old and that she had several signs and symptoms of panhypopituitarism, a condition in which growth hormone, thyroid hormone and other important hormones are not produced. She was extremely short for her age, her movements were slow, she talked very little and she was developmentally delayed. She had a serious brain injury from presumed physical abuse at 3 years old. She survived, but her current condition was a long term complication from her injury. Normally she would be monitored closely after such a serious injury, especially one that resulted from abuse. However, no one took her to follow up appointments. Did the school system, knowing that she was developmentally delayed, not appreciate or seem alarmed by her obvious short stature and other signs and symptoms? Again, what gaps resulted in the system failing this child? While she has a long road ahead, she now has well established care, has started treatment, her energy is significantly improved, and she is visibly interacting more with peers, teachers and family.
These simple observations of life on the Navajo Reservation offer a sense of the complexity of this community. This beautiful land and its people are a highly valued part of our humanity within the United States. However, in some sense, this is a land and a people neglected. Their needs demand more human resources in the way of physicians and nurses; addressing current living conditions which do not always meet the standards of a secure environment; and access to safe, clean water and food. Navajo youth face many social challenges which affect their development and potential, in a community grappling with issues of alcoholism and abuse, with minimal support to address these issues. By relentlessly telling these people’s stories, and even our own personal stories, providers working within this community can increase awareness- an active awareness that has the potential to create change. I was blessed to care for many Navajo children with their bright smiles, laughter and individual styles. As physicians, we bear witness to much, which is a privilege and responsibility not to be taken lightly. It is the very thing that motivates us to improve the system and work towards equity for all. My guess is, in your profession, you also are privileged to know someone’s rather personal narrative.
As we go through our day-to-day lives, it behooves all of us – not just physicians – to foster increased mindfulness to what we bear witness to, and then take it a step further by sharing and educating others while questioning our current systems that create inequity. It is understandable to move on with your busy day and hope someone else takes on the cause, but when you are blessed as a witness, it becomes your duty to share the story, because that is where change begins.
I don’t drive on a real road to work – it’s a dirt one, that fills with potholes whenever it rains. My address can’t be found on maps, so getting services to where I am takes a bit more effort. Many of my patients don’t have running water or electricity and cannot get to the doctor, as transportation and gas money are not always readily available. I went into medicine to do global health, to serve the underserved and where I currently work is in the United States. I live in the Navajo Nation, in Tuba City, Arizona.
Growing up on the East Coast, we learned about Native Americans briefly, to cover the time of Columbus and the founding of the United States. This was a time we recognize as holidays in the US but are gross injustices to the Native American people. However, what we didn’t learn was how those injustices have continued for centuries. From the long walks they were forced to undergo to boarding schools riddled with abuse to the current situation at Standing Rock. The US government has taken from the tribes again and again with no repercussions and no administration that puts a stop to it.
I just got back from Standing Rock early this morning and it was quite a moving experience that I will remember for the rest of my life.
The solidarity that was felt amongst the Water Protectors was shared amongst many of us as we provided comfort and protection to each other. As a social worker, I helped with what I could at the Emotional Wellness tent which was located in the medic area. Two volunteers were manning this particular teepee and the availability was 24 hours / day. Certainly, more can be done. The presence of the US Veterans was quite moving; however, there were many cases of symptoms related to PTSD being triggered.
The experience reminded me in detail about historical trauma that indigenous people feel everywhere. The wounds from recent altercation with the military were felt by many people, including myself. Although I am not of Lakota origin, I felt strongly the history of the area in general and the presence of past traumas. Particularly resonant were the forced removal of the Lakota from the Black Hills and the government’s refusal to honor past treaties, the Wounded Knee Massacre (that occurred twice), the killing of Sitting Bull by “Indian” military police, and the attempts to eradicate the language and spiritual practices of our people. Although I felt safe in the camp, I also felt a sense of uneasiness and heightened anxiety due to the constant presence of the media, helicopters flying overhead, and the presence of a sheriff whose purpose was to remove us from the area. I am no stranger to forced removal and forced relocation as many of our indigenous peoples have felt this from various sources.
The pipeline is described by indigenous people as “the black snake” and this prophecy was foretold by our ancestors. I was painfully reminded again of the ongoing history of treaty violations and the need to stand together and continue to voice our concerns in a peaceful manner.
Although the Dakota Access Pipeline was denied by the Army Corps of Engineers, I feel this is short-lived. I cannot put faith in the government to honor their word due to past atrocities against indigenous peoples. This is shared by many close friends, colleagues, and volunteers. With the imminent administration taking over in one month’s time, I continue to feel uneasy about the entire situation. All I can do is strive to help, to support my fellow people through donations and healing with comforting words, and to pray that our shared goal of diverting the pipeline and maintaining the dignity of indigenous peoples everywhere will be realized.
“I am a servant of Achhami people.” Uday Kshatriya replies to my question: how do you define yourself as a person? Uday is a senior Health Assistant in his homeland of Achham, a remote district in Far-Western Nepal. He has worked for almost a decade with Possible, a nonprofit healthcare organization delivering high-quality services free of charge in rural Nepal. I sat down with Uday to learn about his life, his motivations, and his experience as a healthcare provider in Achham.