Disclaimer: I have truncated peoples’ names to a single letter out of respect to their personal lives and stories. I do not ask you to pity them and/or harbor their sadness. This is an account of the last week in my town. Injustices happen here, as they do all over the world. The injustice of the Chagas epidemic, and epidemics caused by other neglected diseases, are felt all over the Global South with limited affordable treatment options. The treatment for Chagas that is available in Nicaragua is the best of what exists in the world, but it is not good enough. I am not asking you to take any action, yet, but if you are compelled to do so, I recommend donating to Drugs for Neglected Disease initiative (DNDi) a collaborative, patients’ needs-driven, non-profit drug research and development (R&D) organization that is developing new treatments for Neglected Diseases, including Chagas: http://www.dndi.org/donors/donate-support.html
An End to Silence
I just left a vela. It was for the brother of a friend of mine. Let’s call her H. He was 20 years old with a congenital heart condition that, despite doctors’ words of encouragement and reasons to hope, failed him far too young. My friend, 24, has a 4 year old son, and a younger sister who studied nursing but is currently unemployed. Their dad spends most of his days drinking and/or perpetually drunk (the messy kind); though he occasionally dances with sobriety, he always returns to the bottle. He attributes his lack of restraint to agonizing flashbacks of his suffering during the civil war and time as a refugee in Honduras, memories too painful to relive without mental lubrication. The mom is a school teacher.
I arrived at the vela just after 9pm, with 5 girls from my house. H. had given a few charlas to the girls in the past year so they wanted to pay their respects as well. We came late because we were making rice krispy treats (the girls can’t get enough sugar!) for C., “the Chaparrita” (colloquial for short), to celebrate her 17th birthday. The girls roared with laughter at the stickiness and stubbornness of the marshmallow paste, while I maintained a wide grin watching them find so much enjoyment out of such a simple task. The night before I suggested we make C. a card. I lovingly laughed, to myself of course, during the hour art-session it took to write what resembled a solicitude to the alcaldia: We write to you today because it is the anniversary of the day that you were born. Then they drew a picture.
I was surprised to see that the vela was packed at such a late hour. At 10 pm, the mourners were still handing out food to countless community members that came to show solidarity. Yes—the grieving distribute food to all who come, though close friends and family may help with some of the expenses. I asked if there was anything I could do to help and was given a bag of miniature muffins. I followed in the procession of the grieving, trailing the platters of food and keeping closely behind the coffee purveyors. We walked like cocktail servers from the back patio through the house and to the main street where neighborhood kids congregated with the grieving family and townspeople, all sitting on donated plastic chairs and under tents — one from CEPS, a reproductive health education NGO, and the other from the European Union –as they recounted the boy’s last moments along with the day’s gossip. After hugging H. once more, we said goodnight and the girls and I left to return to our house.
The next day I offered the Health Center assistance with activities for International Chagas Day. I replicated the popular “Pin the Tail on the Donkey” and made “Pin the Pico (mouth) on the Chinche”. Chagas disease, caused by a parasite found in the feces of a chinche (the kissing bug) after it bites, is endemic in Nicaragua (especially in the Northern region where I live) and left untreated can cause serious and often irreparable damage to the heart and other vital organs. According to Drugs for Neglected Diseases initiative, a non-profit that works to bring greater attention and mobilize resources to the epidemic, there are more than 14000 Chagas deaths annually in the 21 endemic countries in Latin America, far surpassing deaths from other parasitic and vector-borne illnesses and disproportionally affecting people living in poverty, especially children.
Chagas is considered a silent disease for two reasons: people afflicted are often asymptomatic during the acute phase when treatment is (most) effective in killing the parasite, and in spite of being the leading cause of infectious cardiomyopathy worldwide, the international community and pharmaceutical industry have done little to address the disease with minimal investments for improved prevention, diagnosis, and treatment options.
In Nicaragua, much of the charge behind Chagas prevention and intervention is championed by JICA, Japan International Cooperation Agency, through means of technical assistance to the Ministry of Health and volunteer health promoters, similar to Peace Corps Volunteers. Although the Health Center had coordinated an activity at the primary school for International Chagas Day with materials donated from JICA (in Nicaragua the day is marked 3 months after the official date), the boy’s death changed previously agreed upon commitments. Since his mother was a school teacher, both the primary and secondary schools were closed for the day and everyone was encouraged to attend the Church Misa and subsequent burial.
Ironically, I walked to the Health Center with one of the girls from my house, M., who was told not to go to school (before it was officially canceled) so that she could do follow-up blood work. M is one of my favorites; I often catch her staring and smiling at me from the reflection of the house mirror. She is 19 and in her final year of secondary school, a tremendous accomplishment, especially coming from her community. She is roughly 5’ tall and weighs less than 90 lbs. She lives in extreme poverty with her parents, brothers, and sisters in the mountains of Mozonte. I asked her once if she had enjoyed her birthday the previous day. She responded, “we’re poor”, meaning nothing out of the ordinary was done to celebrate and with no extra resources to make the day special, coupled with a culture of indifference, the day came and went as any other day in the year.
M. stood waiting at the Health Center for the lab technicians from Ocotal, who arrived nearly 2 hours late. Several months ago, M. recounted to the responsable of my house that when she was 8 she was picked by a chinche and her ensuing blood test came back positive for the Chagas parasite. The community’s solution to the chinche problem in her adobe house (the bugs typically live in houses made of adobe and other materials most commonly employed by the poor) was to assist the family in building a new chinche-free home. Typically the antiparasitic medication for Chagas is (most) effective (60-85% efficacy) during the acute phase of the disease. M. was never put on treatment. The responsable, in dismay and horror of the events described, insisted that all the girls in the house be tested. M.’s exam came back positive. That was three months ago and over ten years since initial infection and the acute phase of the disease. She was now returning to the Health Center to confirm the results so doctors could then determine the irreversible damage that has been done to her heart. Did I mention she was 19?
While I was waiting for M. to finish with the technicians, I stood chatting with the doctors and showed off my foam-board chinche with attachable mouth-and-all that I had made for the now cancelled activity. Taking me by surprise, the Health Center Director, a Nicaraguan from Leon, remarked that he didn’t understand the culture surrounding death in Mozonte, and perhaps the traditions in all of Nicaragua. He questioned the closing of schools and businesses – claiming it was a wasteful use of the limited resources that exist in the country.
His commentary reminded me of a passage from the non-fiction book Poor Economics: A Radical Rethinking of the Way to Fight Global Poverty, which I had read earlier in my service. This is the reference:
In South Africa, social norms on how much money to spend on funerals were set at a time when most deaths occurred at old age or in infancy. Tradition called for infants to be buried very simply but for elders to have elaborate funerals, paid for with money the deceased had accumulated over a lifetime. As a result of the HIV/AIDS epidemic, many prime-age adults started dying without having accumulated burial savings, but their families felt compelled to honor the norm for adults. A family that had just lost one of its main potential earners might have to spend something like 3,400 rand (around $825 USD PPP), over 40% of the household annual per capita income, for the funeral party. After such a funeral, the family clearly has less to spend and more family members tend to complain about “lack of food,” even when the deceased was not earning before he died, which suggests that funeral costs are responsible. The more expensive the funeral, the more depressed the adults are one year later, and the more likely it is that children have dropped out of school.
Nicaraguans like to compare their quality of life to life in Africa in a blend of “one-upmanship” and empathy. To be fair, this is not uniquely Nicaraguan; people all over the world make comments about life in Africa – a particular pet peeve of mine. Africa is a continent not a country with many diverse countries and independent territories undergoing different phases of development. Tangent aside, Nicaragua is the second poorest country in the Western Hemisphere after Haiti, and perhaps there is less reason for the superiority complex than one might think:
- Although the African continent bears a disproportionally large burden of worldwide HIV cases, according to the CIA World Factbook, six African counties (out of the 54 African member states recognized by the UN) have an HIV/AIDS adult prevalence rate lower than the 0.02% in Nicaragua, notably the lowest in the region, although it has trippled in recent years. Those countries are: Egypt, Morocco, Tunisia, Algeria, Comoros, and Cape Verde. Madagascar, the 15th most populated country in Africa (nearly 4 times larger than Nicaragua) and located in Sub-Saharan Africa, the intended region of comparison, has a prevalence rate just slightly higher than Nicaragua’s, though in the next census who knows how the two counties will fare.
- Furthermore, according to OXFAM International data “the salary of Nicaraguan doctors (between 200 and 500 dollars depending on the area of specialty) barely exceeds that of that of these same professionals in Malawi, an African country with 80% lower income per capita than that of Nicaragua. In Honduras, which has a comparable per capita income to [Nicaragua], doctors earn nearly three times more than their Nicaraguan colleagues”.
The expense of funeral activities in South Africa, a country with one of the greatest burdens of HIV/AIDS, is not entirely congruent to the costs spent by families of the deceased and communal resources deployed for funerals in Nicaragua. But these examples shed light on some of the many systemic development challenges Nicaragua faces. Both funerals in South Africa and Nicaragua speak to a trend in the Global South: silence through life and loudness in death. Unless too poor for noise altogether.
I often hear people say that the lives of the poor are cheap. Although Nicaragua has socialized medicine “available” to all, many in the United States suffer without access or cripple savings accounts for a chance at treatment. Although it happens in Nicaragua as well, I think it’s to a lesser extent. People die. The angel of death has taken people I know and love in recent years and has left behind residual vacancy. Sometimes there is peace in death, other times there is injustice.
This is injustice.
As I fight my denial, I pray that M. is not truly in the symptomatic chronic phase of Chagas, where treatment and management of the condition may be beyond hope. I pray that she has not listened to the countless charlas about Chagas and does not know her potential fate. I pray that the system will not make another potentially fatal error and fail to put an infected child on treatment immediately. I pray that the uproar of sadness and solidarity in death can raise the volume for action in life. I pray for no more silence.