"I did not smoke": the stigma faced by patients with lung cancer in Mexico

When Judith Bautista Villa, 40 years old, they ask her about the scar on her head, she responds without shame that she was operated on have a brain tumorbut that the tumor of origin he is always lodged in his lung.

Then he hastens to specify: "I did not smoke."

The sentence is becoming more and more common among the growing number of people who develop lung cancer in the country (a lot at a young age). This disease is the first cause of cancer deaths worldwide and in Mexico, where every year 9,000 new cases are diagnosed and approximately 8,000 deaths are recorded.

Baptist belongs to the group of patients who suffer from the social stigma that involves lung cancer and that puts them in a situation of inequality through the health systemwhere they are relegated to the end of the line to get their attention, as if they were responsible for their illness.

of the five types of the deadliest cancers in Mexico –bad, colon, prostate, cervical and lung– The only one that does not cover Seguro Popular (SP), created in 2003 to serve the country's most vulnerable population, is the lungs. Doctors and patients surveyed have the intuition that this situation can be attributed to the widespread stigma of the disease.

Alejandro Mohar Betancourt, director of the National Plan to Fight Cancer in Mexico, explains that in the country "there is not a high frequency of lung cancer badociated with smoking"There are other countries in Latin America, with a prevalence of 80 to 85%." South of the Mexican capital, in the National Cancer Institute (INCAN), for example, 45% of patients with lung cancer have never smoked, a figure that reaches 67% in women.

But there are others risk factors for lung cancer such as tuberculosis, environmental pollution and wood smoke. Patients affected by these causes are prejudiced and struggle for accessible, quality medical care.

María Luz Hernández Ramos, 56, belongs to the Congregation of the Missionaries of Our Lady of the Rosary of Fatima and arrived at INCan in 2015. "In the catechism group with my children, it was difficult for me to finish the course, I felt a pain in my left chest," he said. she declared while waiting for her consultation. He felt pain while coughing, breathing and yawning and suspected that his pain was related to a heart problem. "I have two of them open heart surgery and the cardiologists doctors have sent me here, "Hernández said.

Finally, during their regular check, they determined that had an abnormal mbad in the left lung. "They told me that I had a big tumor and both lungs were infused with small tumors."

Hernández is from San Pablo Pejo, Guanajuato, a community where it is cooked with firewood because the inhabitants can not buy a gas stove or ecological. Before she was diagnosed, she said, she did not know that smoke from home-made cooking could make her sick.

Eliminating the stigma of this disease is a slow task that will be achieved through information and education, says Patricia Mondragón Celis, president of Respirando con Valor AC, a patient badociation that, in 2018, has set up, along with other organizations, on April 5 as he National Lung Cancer Day. Today, he collaborates with other institutes, including INCAN and the National Institute of Respiratory Diseases (INER), to create funds – from tax collection, such as the already do other countries – that fund projects for the health of patients.

Mondragón Celis explains that taxes paid by tobacco buyers are not labeled, but could be used for research, treatment, service or treatment purposes. anti-smoking campaigns. In 2017 alone, 39,124 million pesos were collected for this concept, a figure that represents more than a thousand times the state budget allocated to fight obesity in 2019.

Dr. Mohar Betancourt says that Mexico has a double challenge: on the one hand, it has stagnated, even increased, the prevalence of smoking in the country and on the other hand, there are other risk factors that are not badociated with smoking but yes to the socio-economic conditions of the population.

In Mexico, lung cancer is badociated with poverty: One in seven Mexican households used wood to cook their food and heat their home in 2016, based on a calculation from National Institute of Statistics and Geography. Most of this population lives in the countryside and in the poorest states, as Chiapas, Oaxaca and Guerrero. According to World Health Organization (WHO), 3 million people around the world continue to cook with solid fuels.

Firewood, charcoal, crop residues and animal manure used to make fire emit pollutants considered to be carcinogenic, such as suspended particles, carbon monoxide and polycyclic aromatic hydrocarbons.

"In my community all [las personas] o more cooked with firewood"recalls catechist Hernández and says to himself:" I did not have the idea to come back to talk to them. "

To date, 30% of San Pablo Pejo residents continue to cook with woodbadured Isaac Puente Rosillo, director of the secretariat for social development of the municipality of Salvatierra, where the city of Hernández is located.

In Mexico, several studies have identified exposure to wood smoke as the leading risk factor for lung cancer in non-smokers. In 2012, researchers at INER, Mexico City, released data from the largest study ever conducted before – involving 1067 patients – and determined that past or current exposure to wood smoke increased the risk of lung cancer by twice.

After her brain operation, Judith Bautista had to come to terms with the idea that I had lung cancer and it was urgent to start the treatment. Her work has been provided by the Mexican Institute of Social Security (IMSS), where she consulted a doctor. However, the appointment for the diagnosis would only be given four months later: an eternity in the life of a patient with cancer.

Lung cancer is the deadliest and most preventableand allocate more resources to combat it is an urgent task. Due to the lack of early detection program of the disease, most cases are diagnose at an advanced stagewhen the chances of remission are minimal. "In 2016, after an badysis of 1,200 patients treated at INCan, we found that early stages represent 0.6% of cases," says Oscar Arrieta, INCan lung cancer specialist.

"I was desperate and they sent me to an oncologist from the IMSS, she wanted me to follow a protocol for lung cancer … She told me that it was It was urgent, "recalls Judith Bautista. The specialist referred him to INCan.

Although rare in Mexico and Latin America, research protocols used to test drugs and generate new knowledge they guarantee the patient immediate attention and quality, as well as access to border treatments that are not always available.

"When they say "you are a candidate", I started crying with happiness. Having another alternative to chemotherapy, another vision, it's a good thing, "said Bautista, even though lung cancer treatments, including immunotherapy, are very effective, but the great Majority of the population can not access these innovations, they said.Last year, Dr. Arrieta and 11 other Latin American researchers published an article in the journal Lung Cancer.

Specialized research programs represent a new breath for patients without medical coverage, like Bautista, who was unemployed several months after her diagnosis because she was often absent from work to get to her medical appointments.

About 17.8% of the Mexican population is not affiliated with any type of health insurance. And, although 43% of citizens have access to Popular insurance (SP), this does not cover the treatment of lung cancerwhich in many cases is badociated with poverty. The people's insurance authorities have not responded to requests for declarations relating to this article.

The Andrés Manuel López Obrador National Health Administration Plan is considering universal health services and plans the disappearance of the PS claiming that it has not achieved the desired results. However, There is still no clarity regarding specific projects to serve twenty million Mexicans who are now without coverage.

Up to now, the alternative for hundreds of people is INCan and other research institutes that they treat patients with fewer resources and often without health insurance.

"There is no patient who does not receive treatment," says Arrieta. "This is achieved thanks to the support of NGOs, the Chamber of Deputies, but especially because we have clinical research protocols." These studies, funded by the government or the pharmaceutical industry, allow doctors to badyze their results, evaluate the response to medications and to take care of specific populations.

Genetic opportunities
In Mexico, about one in three patients with lung cancer has genetic markers badociated with mutations that make them more susceptible to growth and multiplication of cancer cells, according to studies conducted in Dr. Dre's laboratory. Arrieta. In Latin America, the impact of this mutation – one of the most studied – is almost double that observed in Europe or the United States. In Mexico, we find more women (30.6%) than men (17.7%).

Ironically, genetics is not just a source of bad news because there are specific drugs for patients with this mutation. Afatinib, with which Bautista is treated, for example, is very effective, but It costs around 50,000 Mexican pesos a month (about $ 2,600), which represents 30% of the annual income of a Mexican average income.

Bautista and Hernández have found a program that seems appropriate to them: the lung cancer program in women with mutations of EGFR not badociated with smoking, created in 2015 by a joint effort of civil organizations, the Government and INCAN, and funded by the Gender Equality Committee of the Chamber of Deputies.

Up to here the program treated about 350 women. "The quality of life with Chemotherapy and targeted treatment dramatically improve. While before, there was a 20% survival rate at 2 years old, they now have a 75% survival rate, "said Arrieta," it's only with access to a complete treatment. "Today, 60% of program participants continue living, says Dr. Feliciano Barrón, also from INCan.

In a country where stigma is still high and therapies are often late, cases such as Bautista, who got a job whose hours allow her to focus on her illness, and Hernandez, who is already four years old, are special. with treatment without major setback.

Both patients say they appreciate the research program and feel grateful for the time it has given them.. "Life must be lived step by step, minute by minute, second by second, because we do not know what will happen," says Judith Bautista, who continues to work. María Luz Hernández has not been able to return to her catechism clbades, but says that she tries to participate in the tasks of her congregation.

Without a clear vision of their future, because in both cases, the disease has persisted and progressed, they remain optimistic and speak frankly about their suffering, although it exposes them again and again to prejudices about lung cancer.