Cancer in My Community is a Cancer.Net Blog series that shows the global impact of cancer and how people work to care for those with cancer in their region. Ramila Shilpakar, MD, MBBS, DM, is a medical oncologist at National Academy of Medical Sciences (NAMS), Bir Hospital, in Kathmandu, Nepal. Dr. Shilpakar is also an American Society of Clinical Oncology (ASCO) Editorial Fellow for JCO Global Oncology. Dr Shilpakar received the Merit Award from Conquer Cancer, the ASCO Foundation, in 2019. Her main areas of interest are global oncology and cost-effective therapies for low-income countries. Dr. Shilpakar has no relationships to disclose.
Why I care for people with cancer
From the beginning of my medical education, the mystery of cancer fascinated me. I always wondered, “How can your own cells grow uncontrolled and destroy you?” While I was doing my residency in internal medicine, I wanted to know more about cancer, but we did not have a rotation in oncology. I also realized there were relatively few people formally trained in medical oncology, and there was no formal training program in Nepal. I still remember when I requested an oncology posting and I was told, “There is nothing you can do in oncology. Once diagnosed, that is the end.”
Like the general public, many doctors in Nepal thought of cancer as a dead end. During my residency, we rushed to treat patients during a heart attack and did kidney biopsies to find out what was causing kidney problems. But when we had a suspected lung cancer diagnosis, for instance, we only sometimes referred the patient for a biopsy. Often, discussions with patients and their relatives ended with the belief that there was not much that could be done for them. While we had many procedures for a person with kidney disease or a person with liver disease, whenever we suspected cancer, we became very reluctant.
Unfortunately, as I progressed through my residency, the situation didn’t change much. Cancer was always in the cases we discussed at the bedside, but we never really placed it at the top. I had learned how to evaluate a suspected autoimmune disease, but when it came to a possible cancer case, I was left confused. I could diagnose rare neurological diseases, but I didn’t know about the most common cancers in Nepal. This was because I did not have sufficient exposure to cancer or oncology training, unlike other fields in medicine. This lack of oncology education in our medical community had real consequences for our patients, who had delays in diagnosis, which affected their chances of potential survival and quality of life.
This situation encouraged me to pursue oncology. Now, after getting better insight and knowledge into oncology, I truly believe that oncology is the discipline that deals with caring for patients in the most holistic way. It ranges from the pure joy, fulfillment, and deep satisfaction of sending a previously ill patient home smiling and offering them blessings after treatment, to being compassionate and resilient while comforting a terminally ill patient. It encompasses the true sense of humanism in medicine.
The recent advancements in the evolving field of oncology gives a lot of hope and positivity, even for the most advanced and rare cancers. Cancer treatment has changed dramatically over the last few years. Even though most of the treatments are not yet available in developing nations like Nepal, we still have hope and optimism for the future.
What cancer is like in Nepal
Nepal is a small, beautiful, landlocked country with rich cultural heritage and diverse nature ranging from Mount Everest, the highest peak in the world, to the flat terrain of the plains. According to the World Health Organization (WHO), non-communicable diseases (NCD), which are diseases that cannot be transmitted from one person to another, account for 66% of all deaths in Nepal. Cancer is an emerging but neglected public health problem in Nepal. The majority of patients are diagnosed with advanced or metastatic disease because of delays in diagnosis and treatment and because many feel that cancer is not treatable.
Cancer stands as the third most common cause of NCD death in Nepal (9% of deaths). Lung cancer, cervical cancer, breast cancer, stomach cancer, and colorectal cancer are the top 5 cancers, according to Globocan 2020 data. The most common cancers are lung cancer in men and cervical cancer in women. However, the true magnitude of disease in terms of incidence, prevalence, and mortality is still not fully known because Nepal did not have a population-based cancer registry until recently. A cancer registry is a system used to collect and store information about people with cancer. It’s important because it marks how prevalent cancer is in an area and tracks how the impact of cancer changes over time.
Challenges of cancer treatment in Nepal
As in many developing countries, there is a lack of universal health coverage in Nepal, so health care is delivered by both the government and a private system. Yet even in the government system, most of the medical expenses fall on the shoulders of the person with cancer and their family. Nepal also lacks effective cancer screening and prevention strategies. Many of the basic tools for diagnosing cancer are hard to find, and this is a huge challenge in delivering cancer care. For example, immunohistochemistry (IHC) lab services are only available in limited centers of Nepal, so most specimens must be sent to India and it can take around 2 weeks to receive the report. Positron emission tomography and computed tomography (PET-CT) scans, which were available in 2 private centers, have recently been stopped due to the COVID-19 pandemic. I have sometimes felt very helpless knowing there are so many new treatment options for people with cancer, like immunotherapy or targeted therapy, but they are either not available or are unaffordable.
The number of centers providing cancer care services is also very limited for a population of 30 million people. Many people with cancer travel from across the country to visit our center for treatment. Most of them don’t have a place to stay during treatment, which takes months. Some patients stay with relatives, while others must rent a place to stay. These situations, along with the loss of a job, loss of income, and the cost of staying away from home, further aggravate the financial burden of cancer treatment. There are also not enough oncology clinicians to provide services across the country. There is a lack of essential chemotherapy drugs as well as radiation therapy services.
Building the infrastructure and having more trained oncologists across the country is a high priority for improving cancer care in Nepal. More oncology education is needed in medical schools, as well as postgraduate programs.
Many people do not complete their cancer treatment, often because of poor access to health care, low health literacy, and the high cost of diagnosis and treatment. It is very common for people to delay seeking care because they are afraid of the stigma of cancer, and many patients refuse treatment in favor of alternative medications and traditional healers.
Government efforts to improve cancer care in Nepal
The government of Nepal provides financial subsidies of nearly $1,000 to every person diagnosed with cancer, which, even if insufficient, provides some relief to patients. A hospital-based cancer registry in Nepal was started in 2003, and there are now 12 such registries in the country. In February 2015, the government of Nepal also started a health insurance plan in 3 pilot districts and is gradually expanding it throughout the country. In January 2018, a population-based cancer registry, a vital step in cancer care, was started by the Nepal Health Research Council, a body of government in Nepal. It first covered approximately 20% of Nepal’s total population and is expanding.
In cancer prevention efforts, the Division of Family Health formulated a national guideline for cervical cancer screening and prevention in 2010. Finally, the government is working on better implementation of tobacco control acts, recognizing that tobacco use is 1 of the leading causes of cancer. There has also been development of national strategy for palliative care, which is the backbone of cancer care.
Bir Hospital in the capital city of Kathmandu is the only institution in the country that has an official oncology education program. This fellowship program, certified by the National Academy of Medical Sciences (NAMS), is strengthened through collaboration with the American Society of Clinical Oncology (ASCO) and Health Volunteers Overseas (HVO). International experts regularly visit the institution to provide academic support.
How global partnerships are shaping the future of cancer care in Nepal
There have been many changes in cancer care in Nepal in recent years, and the future looks even more promising. Mutual help and collaboration from across the world has helped change how cancer care is delivered in Nepal. The B.P. Koirala Memorial Cancer Hospital (BPKMCH), a cancer hospital in central Nepal developed with Chinese collaboration, is providing state-of-the-art services to thousands of people with cancer every year. The International Gynecologic Cancer Society has started a fellowship in Nepal to strengthen gynecologic cancer care in the country. A helping hand from the Max Foundation has been given to thousands of people with cancer and has allowed them to live their dreams that otherwise would not have been possible.
ASCO has also been helping in many ways to improve cancer care in Nepal by organizing and endorsing educational training and conferences. ASCO and HVO have been continuously working to expand professional development programs in Nepal by recruiting international experts to train fellows. The country has its own world-class bone marrow transplant center at Civil Service Hospital, which has a collaboration with the University of Chicago. I am very hopeful that there are going to be a lot more national and international collaborations for better cancer care in the future. Things are changing for the better in Nepal!
Local resources and support for people with cancer in Nepal
There is still need for local cancer support resources In Nepal. However, there are cancer survivors and support groups who help people with cancer and their families with emotional, psychological, and even financial support. These groups and many organizations, like Cancer Care Nepal and Nepal Cancer Relief Society, work for cancer awareness and support screening campaigns. In addition, collaboration and coordination with institutions from developed countries facilitate many aspects of cancer care, including treatment, patient advocacy, and research.