Collectively, we all I think have a common misperception of health and disease in developing countries. In particular, we tend to think of developing countries as places riddled by infectious disease, like malaria, HIV, and tuberculosis. And, of course, these conditions and others like them are indeed very serious problems for many countries.
However, all developing countries are also experiencing growing burdens of what we in the medical profession call “noncommunicable diseases” (NCDs). NCDs are conditions like asthma, heart disease, diabetes, and cancer. Most of us think of these conditions as disease which affect primarily ‘richer’ countries, but this is not at all the case! For example, more than 60% of all deaths in the world last year were due to NCDs, and of those deaths more than 80% of them occurred in ‘poor’ countries. Of the 350 million people in the world who have diabetes, 280 million of them live in ‘poor’ countries. 70% of all deaths from cancer occur in ‘poor’ countries.
Combatting NCDs in developing countries like Guatemala is difficult. Unlike most infectious diseases, it is not enough simply to provide a cocktail of medications to kill off or control the infection. Think about diabetes for example. Effectively treating diabetes requires intensive laboratory tests, nutrition counseling, regular medical checkups, and treatment of a whole host of complications that arise over the course of the patient’s life (blindness, kidney failure, foot ulcers, heart attacks, and the like). Or think about cancer: surgically removing a tumor is not usually enough; the patient also usually requires extremely toxic combinations of chemotherapy medications (which have severe side effects and are very expensive) as well as access to radiation therapy, pain medications, and hospice care (in cases that cannot be cured). Care of NCDs, in other words, strains the medical system to its breaking point in a setting where resources like specialist doctors and medications are already strained beyond comprehension. It also requires a degree of coordination that the health care system often cannot handle. For example, in Guatemala, it is not uncommon for more than 50% of all patients with cancer never to go back for their second appointment with the cancer doctor. There are financial considerations obviously that affect this number, but there are also the issues of fear of the medical system, lack of trust in physicians in general, and lack of an advocate who helps the patient negotiate the system and decide what treatments are best for them.
Over the last several years, Wuqu’ Kawoq has been focusing more and more on coordinating care for NCDs, and we have updated you periodically about our successes and failures in this area. In 2011, we had an unusually high number of cancer cases, and I wanted to take this opportunity to describe to you a few of these cases so that you can all appreciate the complexities and the soul-searching questions that arise in this context.
In the spring, we encountered a case of a young man with a rapidly growing tumor in the neck. The tumor made it difficult for him to breath and eat. Because we were concerned that he was running out of time, we hospitalized him to facilitate workup and treatment. A biopsy was performed, but the results were equivocal. It turned out that this was a rare form of a relatively undifferentiated tumor, and none of us had any experience with it, nor did any of our cancer colleagues in Guatemala. The tumor was extremely malignant and rapidly growing, and there were several weeks of delays in starting treatment as we tried to figure out what was going on and how best to treat it. The man was eventually started on a combination of chemotherapy and radiation, but these only extended his life a few months. He died in the hospital, surrounded by family members and Wuqu’ Kawoq staff. Could we have sped up the diagnostic process? Would doing so have made a major difference? Should we have counseled the family to end (relatively futile) treatment earlier, so that the man could have died in the comfort of his own home?
This summer, we had a 40 year old woman who came to our central clinic with complaints of vaginal bleeding. Upon performing the vaginal exam, I immediately new there was a major problem; the woman had a huge tumor growing off of the cervix, entirely filling the vagina. We performed a CT scan which showed invasive cervical cancer spreading up into her pelvis, invading the ovaries and other organs on both sides. Advanced cervical cancer is one of the most incurable of cancers, even in the United States with the best-possible care. We explained this to the patient, suggesting that we focus on palliative and hospice care including radiation therapy. However, obviously in despair over the diagnosis, the patient got a second opinion from a private surgeon (not a cancer doctor) who suggested to her that she should be operated on. He performed a surgical debunking of the tumor, and the family took out a bank loan to pay for the procedure. She died from complications of the surgery. How do we improve our process of guiding patients through a terminal diagnosis? How do we ‘protect’ patients and their families from bankrupting themselves in consultation with for-profit opportunistic medical practices?
Not all the cases have such bad outcome. For example, we currently have a 30-something woman with a metastatic fibrosarcoma. This began as a tumor on her foot which she neglected (for fear, and also for lack of financial resources) but eventually spread to her lungs. The tumor has been removed surgically, and she has now completed 6 rounds of chemotherapy for the lung metastasis. She is doing well, and all of the lung tumors have gone away. Is she cured? Probably not. The lung tumors have a high likelihood of coming back at some point, or cropping up somewhere else in her body. However, she did well with the chemotherapy, she is in good spirits, and the treatment has unequivocally prolonged her life, potentially for some years to come. Going forward, however, how do we continue to provide support and guidance? How do we help this woman, with little previous exposure to the health care system, negotiate for herself the concept of ‘remission’ (as opposed to cure)?
This is a learning process for us all, and we any thoughts and insights from all of you.