Guatemala’s health system is complex and fraught with inequity, and recent evidence shows that indigenous patients are dying unnecessarily – even being turned away as part of a potentially racist practice from the gate of the hospital. The racism is inherent in the Guatemalan system and has historical muscle behind it. The rare few who are able to bring a patient advocate (acompañante) to a hospital visit are not permitted to bring this cultural and linguist interpreter into their patient room. This leaves the most vulnerable patients without a way to understand the medical interaction or the ability to navigate the system.
The rural poor, who are nearly 100 percent Mayan indigenous, were the targets during the 36-year Civil War in Guatemala, which ended in 1996. The Leftist rebel groups were largely supported by ethnic Mayan indigenous people, the rural poor. They had little chance for winning against the government perpetrators of massacres. Although it was called a civil war, according to Amnesty International, 200,000 indigenous were victims in crimes against humanity and genocide.
With the end of the Civil War in Guatemala in 1996 and the signing of the peace accords, indigenous poor were granted access to human rights and basic services. This included education, the law, and health care. The intention was to provide access to health care in one’s native language. Funding was supposedly allocated to assist the disenfranchised – those most hurt by the prior regimes.
However, as mentioned in Guatemala Cancer Injustice Fight for Poor Women (Guardian Liberty Voice, April 3, 2014), funds have been misappropriated. Therefore, the legislation that exists is perfunctory, unfunded and not enforced. An example of this is when patients go to the public-private hybrid cancer care hospital, INCAN in Guatemala City.
Those indigenous Guatemalans who receive a cancer diagnosis and a referral from a primary health care clinic have several difficulties ahead of them. They may spend two to three days’ worth of wages or have even sold land to pay for extensive cancer treatment. They travel by buses that perilously scale the mountain ridge and are subject to random visits by banditos.
They often begin traveling from their homes at 2:00 o’clock in the morning in order to arrive in time for a 5:00 a.m. appointment. They face language and cultural barriers. Upon arrival, they experience yet another difficulty. Many indigenous experience the type of discrimination that existed prior to the Civil Rights era in the U.S.
It is common for the indigenous to finally arrive, exhausted and frightened, at the door of the hospital. Facing a disparaging attitude, these prospective patients are often told by nurses or secretaries that they had neglected to fulfill a basic requirement. With no room for leeway in an outdated bureaucracy, they are turned away before they even enter the building. Often the reason is something as simple as not having brought a recent urine sample. Thus, the referral to a cancer specialist is for naught, and the oncologist may never know why they did not come to their appointment.
Often with a sneer, the “gatekeepers” tell the prospective patients, who are characteristically indigenous, that they must come back the next day. Ill and in need of care, without funds to pay for lodging in the city, they may sleep on a bench outside for the night, which is especially horrendous during the torrential rainy season.
Although funds have been provided by the Guatemalan government for their care, these indigenous do not receive the appropriate or sufficient cancer treatments that they need. That is, even if they are able to come to their appointments, they do not receive the government funds allocated and, without being permitted an advocate, must therefore stop treatment. As a result of this apparently racist practice – whether intentional or neglectful –indigenous patients in Guatemala are dying needlessly.
The Mayans of Guatemala are the only indigenous culture that constitutes a majority of the population in a Central American republic. Fifty-one percent of Guatemala’s population is comprised of 21 different Mayan groups who speak indigenous languages. Language is the primary feature distinguishing these groups from one another. The languages, as well as ethnic dress, distinguish group regions and identity.
As a result of low access to health and other basic services, poverty, and discrimination, as well as distrust of established medical facilities, there is a major persisting gap in health indicators, including in-hospital births, maternal mortality, and vaccination coverage. In a study of five countries, health insurance coverage, though it existed, did not reach the poorest.
In fact, it did not reach even 50 percent of the population. In three of the five countries (Guatemala, Bolivia, and Mexico), indigenous families receive little to no coverage, causing them to substantially lag behind the rest of the population. One of the most egregious gaps is, even in countries that have otherwise virtually eliminated this problem, continuously high malnutrition rates exist among indigenous children.
Peter Rohloff, MD, based at Brigham and Women’s Hospital in Boston as well as in Santiago Sacatepéquez, Guatemala, is Director Médico of Wuqu’ Kawoq, the Maya Health Alliance. The focus of this primary health care system, which was established in 2006, is clinic accessibility for indigenous Guatemalans. Initially, the focus was on the Kaqchikel indigenous community, but it has grown.
A nongovernmental organization, the mission of Wuqu’ Kawoq is to provide medical care delivery and linguistic competence in indigenous Guatemala. They are dedicated to offering primary language services as a first step toward medical care. They develop partnerships and programs that keep focal indigenous language rights, literacy, and medicine in Guatemala.
Dr. Rohloff explains that his organization makes referrals for cancer patients, who are increasing in number due both to increased public health risks and better diagnosis. Despite the United Nations’ Millennium Development Goals (MDG 2) for Guatemala to achieve basic health care for its population by 2015, health care disparities remain significant for the most vulnerable. These include the indigenous who make up the majority of the population and who are living in poverty.
In reference to the bureaucratic, racist system, Dr. Rohloff is quick to mention that the patients are not turned away universally. This is specific to the complex of public hospitals in Guatemala. Because of its public funding, INCAN is the only hospital where patients without insurance can get cancer care, and their treatment is purportedly supported by the Guatemalan government. Moreover, he asserts that it is not active, conscious racism, but rather overworked, underpaid front line staff who think they are doing the right thing, and are caught up in the bureaucracy of the system.
What can be done about these inequities? Dr. Rohloff has several thoughts, ranging from policy change to frontline awareness training on poverty and injustice to mobilizing the private sector and allowing philanthropic individuals to serve as models. Good will begets good will, and physicians and those in the position to influence change may serve as mentors to foster likeminded individuals in Guatemala.
Dr. Rohloff also mentions his dream of creating a system such as Aravind Eye Care System (network) in India. Thirty percent of eye care is highly sought after by wealthy clients who subsidize the balance of patients’ care for free or below cost. The quality of care is not com¬pro¬mised on either side of the price range.
For starters, however, the accompaniment – permitting a social worker or case worker to attend the medical appointment of an indigenous patient – would be a good first step in Guatemala. Dr. Rohloff maintains the importance of building a correction into the existing system. He says that providing patient support serves to increase the conscientious actions of staff. Perhaps with these initial efforts towards combating inadvertent racist practices, the trend of indigenous Guatemala patients needlessly dying can be thwarted.
Patients speak from Wuqu’ Kawoq, Maya Health Alliance:
Opinion by Fern Remedi-Brown
Fern Remedi-Brown writes on global social justice issues (human rights, LGBT, health care and education access, immigration, refugees, Nazi Holocaust) for Guardian Liberty Voice.
Previous articles on Guatemalan poor women fighting for cancer care include:
Guatemala Cancer Injustice Fight for Poor Women
Women’s Cancer Collective in Guatemala Demands Allocation of $3M
Previous articles on Global Health include:
Global Health Security – Obama’s Initiative Is the Tip of the Global Iceberg
Global Health Concerns Are Much More Than Infectious Disease
Breast Cancer Diagnosis and Healing
Vitamin D Benefits Breast Cancer Patients
Allergy Concerns and Relief
Fukushima Radiation Fear Three Years after Disaster
Amnesty International News
Interview with Peter Rohloff, MD, Director Médico of Wuqu’ Kawoq
Wuqu’ Kawoq, Maya Health Alliance
World Directory of Minorities and Indigenous Peoples
Guatemala – Educational System—overview, 2010
International Monetary Fund
Hospital de la Unidad Nacional de Oncología Pediatríca (UNOP)