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A Letter from Dr. Aboulafia

My Time in Janakpurdham, Nepal: 

With the ominous shadow of COVID-19 looming very large just now, and as we all become immersed in this most important issue, I thought I would share my experiences with each of you on virtual paper.

As you all are probably aware, Binay and Tara Shah convened the 3rd International Cancer Congress in Janakpur, Nepal on March 6th and 7th. They invited me to attend and extended to me further courtesies, asking me to give a general talk on lymphoma and to help organize a research symposium for the Binaytara Foundation Cancer Center. As the newest member to the BTFCC board, and most assuredly, the most ignorant of global health concerns, I jumped at the opportunity. Little did I realize the anxiety I was to experience just in the days before my trip as I perseverated about our weak US public health response to Coronavirus and the damaging remarks that were flying out of Washington, DC.  Watching events coming from Wuhan, China and South Korea, and the emergence of the virus in Europe was also not helpful and added to my heightened state of anxiety.

Just days before my flight, I attended our Institutional Grand Rounds, where I heard a terrific presentation by my infectious disease colleagues on, you guessed it, COVID-19. Two slides were seared on my memory.  The first was comical; an unusually good-looking group of Italians in an airport dressed stylishly in a variety of protective hazmat suits which possessed a distinctly Armani flair. The speaker remarked “…leave it to the Italians to look good in any circumstance.”  The second slide was an update from the WHO showing the worldwide distribution of documented infections. Only three cases of COVID-19 had yet been reported from Nepal!!  As with any good talk, I was entertained but also felt a growing sense of dread over my trip knowing full well that you can’t quantitate what you yet can’t measure and with a shortage of available testing kits, I knew this number to be inherently unreliable.  That said, my flight from Seattle was uneventful and I was thrilled that I had slept better on the plane than I usually do at home.

Twenty hours later, as I approached Nepal and looked out of my airplane window, I was struck by a landscape the likes of which I had never seen before. The grandeur of incredible mountains piercing bizarre shaped clouds was juxtaposed by the crumbling buildings and modest dwellings that I could see as we descended to Katmandu airport.  That first day I spent in Katmandu and was shocked to see so many people wearing masks of all manner and sorts. Many of these covers were far more sophisticated than those typically used in my own medical center. Did they know something I did not?  I found myself repeating underneath my breath “… just three cases of COVID-19.”  Only later did I learn that in Nepal, as well as much of Asia, China, and the Indian sub-continent, the people use these masks every day to filter out particulate pollution which is such a terrible public health problem in this part of the world and most assuredly contributes to the very large number of cancer cases, heart and pulmonary diseases, as well as a myriad of other health problems that afflict the populace. Because of my heightened awareness of COVID-19, I did not venture too far from my hotel and although I worked out at the gym, I had made up my mind that I would not try to do this again during my short trip.

The following morning, I took the first flight out to Janakpur. The flight lasted 60 minutes before we deplaned, and I was greeted at their tiny airport and taken directly to the meeting. There, perhaps 75 health care workers were in attendance. These included luminaries from Katmandu, India, the United Kingdom, fellow physicians from BTFCC, local and regional medical students, and a number of young physicians-in-training. Also present were Drs. Siddhartha Yadav from Mayo Clinic, Rochester, MN and fellow BTFCC board member, Derrell Walker from Boise, ID. He had come, with his wife Kim, to Nepal by way of India where he had been furthering his impressive efforts to organize palliative care in that neighboring country.

The International Conference lasted two days and was quite excellent. All the speakers were expert in their fields and Binay did a very good job of keeping each of us speakers to our allotted time. Perhaps most valuable to me was the time devoted to questions after each talk.  It allowed me to get a better picture of what manner of cancer and health services are currently available in Nepal and what treatments are in and out of reach for most Nepalese (more about this a bit further down). Importantly, I learned of many inadequacies in the Nepalese health care system including the lack of a true countrywide cancer registry, the nascent efforts in cancer screening and control, and the dearth of cancer clinical trials within the country. One presentation elegantly described the case mix of hematologic cancers at Katmandu’s leading hospital where only a very small percentage of the patients receive some form of chemotherapy. This was due to a myriad of reasons, but principally centered on the cost of care and the prevailing belief of patients that if they were destined to die they did not want to leave their families in debt. This was a sentiment that was reinforced by other participants at the conference.

The central importance of palliative care was also highlighted at the conference and was borne out by presentations by Dr. Sudip Shrestha of Nepal Cancer Hospital and Dr. Walker. The many very specific and very basic questions posed to the two speakers from the audience were a testament to the high level of engagement that took place.  As the panel fielded these questions, it was easy to see that far more work is required to educate physicians as well as patients about low-cost therapeutic options for pain relief.  Through further conversations with Binay and several of the doctors, I also learned of economic, social, and political barriers that make excellent health care such a challenge in that area of the world. The availability of appropriate and compassionate palliative care is, however, a very achievable and immediate goal despite the many inherent barriers present in Janakpur. Through my interactions with BTFCC staff, I came away with the comfort of knowing that Dr. Sanjay Gupta, Chief of Cancer Prevention at BTFCC is being well groomed to lead this effort.

After the conclusion of the first day of the conference, Binay took Derrell, his wife Kim, and me to the Binaytara Cancer Center. At first blush, I was admittedly underwhelmed. The facility was relatively deserted, the rooms seemed totally inadequate, and the space seemed way too cramped to do effective work. On a brighter note, I was proud to see that the money my wife Audrey and I had donated last year at the Seattle Cancer Disparity Conference had indeed gone to purchasing a chemotherapy hood where therapeutics could be reconstituted and prepared in a safe and sterile environment.  I was also gratified to learn that the number of patients with cancer who were receiving care at the center had skyrocketed from 10 to 140 in just the few months since the center had opened its doors to the public. As a spoiler alert, first impressions are not always the longest lasting, and again, more to come.

From the hospital, we returned to the meeting center where a gala dinner was to take place. While sharing a bicycle taxi with Dr. Anshu Thakur, a remarkably earnest and dedicated staff oncologist at BTFCC, he eloquently and patiently explained to me the central importance of the Hindu gods Shiva, Sita, and Ram among the people of Janakpur. As I listened intently, I also was humbled by my complete ignorance of the Nepalese culture. I made a mental note to be far better informed of the people, their culture, and their economic and political realities before my next visit.

Through the efforts of Binay and Tara and the good will that they and their family (in particular, Binay’s father and brother) have earned in Janakpur and Katmandu, the dinner and fund-raising effort for the cancer center were a big success.  That evening, the company was warm and relaxed, the food was delicious, and the attendees were entertained by a beautiful and very athletic traditional dance describing how Lord Shiva’s bow fell after Ram broke in to win Sita’s hand in marriage. It was also lovely to be treated by Binay’s oldest daughter who entertained the audience with her violin playing. Although only ten years old, it was obvious that, like her parents, she is gifted, hardworking and very determined.

On my third day, I spent most of the day at the BTFCC where Dr. Yogendra P. Singh of Katmandu, Sid Yadav, Binay, and I gave a seminar on “Cancer and Biomedical Research: An overview with practical plan on how to get started.” The seminar began with Binay discussing why it is worthwhile to perform clinical studies and contribute to the medical literature.  I followed by giving a general talk on the Ethics of Clinical Research. I sought to give a historical context to some of the most infamous abuses that have taken place under the banner of “research.” Abuses of which all of you are so well aware, including the most notorious of examples such as the syphilis and other sexual transmitted disease experiments in Tuskegee, Alabama and the evil experiments that the Nazis inflicted on unwilling participants throughout the death camps during the Holocaust. I also touched on a few lesser well-known examples of abuses conducted by US investigators in Guatemala and at the Willowbrook Mental Institute.  We also reviewed key ethical principles, including scientific validity, and respect for participants; concepts that are required as part of our on-line accreditation to do research each year at our respective institutions.

Dr. Singh then followed with a thoughtful lecture on the basics of scientific research and touched on the importance of ethical and valid studies while also further expounding on the important and necessary function of an Institutional Review Board. Binay nominated Dr. Singh to lead the BTFCC IRB and I was “volunteered” to be a member. We will need to think about what that IRB will look like, who its members should be, and how we will review research proposals as Binay continues his efforts with others to develop research projects focused on cancer clinical trials, descriptions of common and rare cancers in that area of the world, capabilities to assess various genetic aberrations in cancers, and to explore cost-benefit models associated with cancer care delivery in Nepal. Clearly, much work is ahead to better identify projects and leaders for this effort.  We will need to capitalize on the experience and expertise of board members and supporters of BTFCC.

The seminar concluded with Dr. Yadav giving an excellent and very practical talk on how to get one’s papers published. The talk included many personal examples of the different ways that the audience could get moving with efforts to publish their various experiences. That Dr. Yadav is from Janakpur and his family still lives in the area made him a wonderful and very real role model to a relatively young audience. Binay was quick to congratulate Dr. Yadav on a wonderful talk and the audience responded in kind with a strong round of applause. That Binay did not call out my talk in such a fashion and that the audience did not clap nearly so enthusiastically for my presentation was a source of annoyance for me. I made a point to call out this unfair treatment, which was followed by a nice round of good-hearted laughter. Although I felt good to help teach, I felt I learned far more than our audience members, for I saw first-hand how genuinely eager the students were to learn. I also could clearly see how they so enthusiastically looked forward to very bright and meaningful futures filled with contributing to a greater good. It was also a great example of how Binay and Tara are building community with a new generation of Nepalese doctors.

A large portion of the next two days was spent visiting Janakpur, seeing some of the important religious sites in the town center, and receiving further tutorials from Binay as well as Tara on health flashpoints in the community, including fundamental barriers to cancer care, and governmental obstacles impeding equitable health care. I also learned of reasons why patients in Janakpur are slow to see physicians even in the face of progressive cancer.  Educating the populace about early warning signs of cancer, developing robust cancer screening tools, and establishing infrastructure all hearkened back to additional important themes of the two-day International Cancer Conference.

As I reflect on barriers to health care in Janakpur, I want to share an eye-opening experience. Binay, Tara, and I took a short stroll from the town center to the largest and reportedly best hospital in Janakpur. At a distance, the building looked modestly impressive as it was among perhaps the largest I had seen in the area. The inside of the hospital, however, revealed a different reality. Many of the rooms were cramped, there were no physical barriers between the patients, the beds and floors were filthy, and I saw not a single physician in plain sight. The few nurses that were present did not seem to have an obvious function as the patients were expected to self-administer their pills and dispose of their urine and feces. Nowhere did I see soap or sanitary wipes. As Binay and Tara spoke to the charge nurse, I saw geckos climbing on the walls and what looked like a tiny rodent scurry across the hall. Because the pay is poor at the government hospitals, the local doctors generally spend as little time as possible there, preferring their private clinics where perhaps they have more control over the situation and where they can make more money.

The lack of MD oversight, the scarcity of resources, and the sleeping nurses huddled in corners rather than attending to patients left a strong impression.  So too did a sign hanging on a dirty wall announcing: “Outpatient procedures 75 dollars; Moderate surgeries 300 dollars; and Complex surgeries 500 dollars.” I could not help but wonder what the rate of infectious complications must be and how different this is compared to standards in the US and other countries. Binay further emphasized that the care is poor, but the cost of care is relatively cheap and that more of the population than I might have imagined can afford basic medical treatments—this in a province where a head and neck CT scan might cost about 25 to 50 US dollars. The annual median household income in Janakpur is still only 3,500 US dollars (Transitx.com), and yet is among the highest in Nepal. The life expectancy is roughly 70 years.

The following morning, I woke early and took a walk with Binay and his daughter around the city where many were celebrating Holi, the ancient Hindu festival, originating from the Indian subcontinent. We know it as the “Festival of Colors” and it is meant to signify the victory of good over evil, the arrival of spring, and the end of winter. As is customary in that part of the world where people normally dress quite colorfully, the people were dressed in bright reds, oranges, gold, and purple. My black T-shirt and dark jeans were clearly an anomaly. As we made our way along the city streets, many of the people dropped small amounts of money and rice on the blankets of the many beggars who had camped on the streets and pathways. Once again, it was a humbling experience and, as I saw so many people sprawled across the ground, I could not help but reflect on how easily diseases could be transmitted through these communities and what barriers to accessing care are present.

 

After our walk had concluded, I returned to the BTFCC hospital. It was bustling in a way I had not seen earlier. Exam rooms were filled, and medical consultations were taking place. I was able to better understand the current capabilities of the onsite lab where a full measure of tests can be obtained, including conventional blood and chemistry panels, but where the lead technician can also assess for various markers of immune activation and inflammation, measure tumor markers, and perform a full range of serologic studies. It will be exciting to watch the next steps as the hospital expands its capabilities by bringing on board a qualified pathologist.

Binay has a vision to make the BTFCC the best in the region and they will soon be breaking ground on a new home hospital. A quick example will explain why we have a long way to go and illustrate from where we are starting. While watching Binay and Dr. Anshu Thakar review the course of one of the patients with metastatic synovial cell sarcoma, it became apparent that the nurses were not engaging in the same standards of cleanliness and infection control that we take for granted in the West. Binay used the opportunity to make a teaching point rather than simply castigate a nurse for not clearly following protocol. He convened an impromptu meeting with the nursing staff that lasted an hour. During that meeting, he emphasized that all were to use the Purell at the bedside to wash their hands at the beginning of and at the end of every clinical encounter. The meeting continued to evolve. Several of the nurses are currently working at different medical venues and Binay spoke to them about working at just BTFCC and getting paid sufficiently well to do so, while at the same time growing to be leaders of the hospital’s various departments such as the critical care unit, the chemotherapy unit, and the post-operative recovery unit. He made it clear that he was looking to establish leaders among this crew who would champion standard-of-care initiatives for their patients. He also gave notice that he would be attending the first Nurse’s Report the following morning. It was an episodically stern and then tender meeting as Binay sought to create and enforce strict standards and the nurses earnestly declared their desire to do their best. At one point, I sought to lend levity to the meeting by remarking that in the US, we physicians are the worst at practicing hand hygiene, and it is the nurses who remind us to be more sanitary. I went on to more seriously remark that where I come from, the doctors are not in charge, but rather it is the nurses who run the day-to-day business of our hospitals.  I don’t believe they knew what I was talking about, but I was struck by their earnest desire to do better and excitement of working in a place that might pay them a bit better and which would instill and reward them with a new-found sense of professionalism and opportunities for professional advancement.

As I prepared to leave the hospital, I along with the entire staff were pelted by colored dust in honor of the Festival of Colors. With a flash and a cloud of smoke, I scurried back to my hotel to shower, collect my belongings, and return to Seattle.

With the glow of this amazing experience behind me and the specter of crisis in front of me, I promised myself I would devote energy and passion for the vision that Binay and Tara are creating in Janakpur: a quality medical center free of corruption, and which is bolstered by a pure desire to provide excellent and compassionate cancer care. I will do my part to further the goals of BTFCC to transform into a world-class cancer center offering state-of-the art care, full medical research capabilities, and strengthened by a truly international group of collaborators. It is a vision I look forward to supporting fully in the coming years and for which I hope I can further stimulate colleagues, friends, and even my family to help grow

Binaytara Foundation