"The last thing I said to my husband was 'ask God for this to end quickly'. I felt that my body couldn't take it anymore," says Karina Chacón.
Their journey from Venezuela was marked by pain in her joints. She suffered silently. But she could not cry or break down. She was traveling with her two daughters, who were 12 and 13 years old at the time. She was crossing the border from Ecuador into Peru. It was April 2019, almost a year before the pandemic.
Karina's departure from Venezuela was due to the lack of medications in pharmacies to treat the disease. "Not even anti-inflammatory drugs were available," she says.
She was diagnosed with Systemic Lupus Erythematosus (SLE) 10 years ago. She is 44 years old and lives in the Comas district of Lima. Lupus has affected her vision, injured her joints and damaged her kidney.
Not only did Karina have to deal with her body attacking itself, she faced the discrimination and vulnerability of being a migrant, a woman and a lupus patient.
When Karina went to a health center in Peru for an ultrasound, she was sexually assaulted by a doctor.
"I was assimilating in my head what was going on. How many patients could it have happened to after me?”
Still, “I didn't say anything,” she says.
According to a report delivered by the Peruvian Ministry of Health, lupus cases between 2019 and 2022 have changed over time. In 2019, 85.41% (539) of the cases were women and 14.59% (92) were men.
By 2020, the year of the pandemic, there were a total of 16,000 people with lupus in the country. Women were not only the majority cases but the numbers had increased to 90%. (There are no exact figures on the number of women with lupus in each state.)
Karina and other women with lupus face a battle with both with their own bodies and with the social and economic factors to which they are exposed.
Most SLE patients are of reproductive age and economically active. However, the varied symptoms of this disease prevent patients from engaging in work-related activities.
This happened to Jenny Saavedra. She lives in Sullana, Piura, a state in northern Peru, but it is in Lima that she finds medical attention. "A job would not give me permission every month to travel. I have been in treatment since 2007."
Her travel expenses are almost $400 a month. When those expenses are contrasted with the minimum wage of $270 a month in Peru, Jenny’s economic dilemma becomes clear.
Gumelín Ruíz Fernández, a lupus patient and Venezuelan migrant, faces a similar situation. "When I started my treatment, I began to have difficulties at work. My body could not stand the schedule, it was too exhausting. I started to take absences until they fired me," she says.
When she was employed, Gumelín had access to Social Health Insurance (EsSalud). When she lost her job, she could not afford health insurance.
Fortunately, her doctor told her about the special unemployment coverage that a former employee can apply for. For her, it was extended for eight months. In addition, her husband was able to register a company in the country, which allowed her to continue with the insurance.
Karina is not as lucky. She does not have medical insurance, so the monthly cost of her treatment per month is about $238.
Even with the high cost of treatment, lupus patients cannot afford to wait. "If it's not treated in time -- which is usually due to the difficulty of accessing hospitals -- the prognosis can get bleak," says Dr. Wendy Sotelo, a rheumatologist with more than 20 years of experience.
Several medical facilities -- Hospital Rebagliati, Hospital Nacional Guillermo Almenara Irigoyen, Hospital Loayza and, especially, Hospital Cayetano Heredia -- have become reference points in the treatment of lupus. In the case of Hospital Cayetano Heredia, 50% of its lupus patients come from Peru’s provinces.
All of the hospitals are in Lima.
For Gumelín, the disease began with joint swelling and then severe headaches. In 2011, doctors treated her as if she had lupus, even though ANA test for lupus and other autoimmune diseases was negative.
Gumelín continued with her treatment in Venezuela until 2015, when she received a call from her job telling her that she was fired. That same year, the social and economic conditions in began to worsen in Venezuela. Gumelín and her family migrated to Peru.
Currently, there are 6 million 113 thousand 035 Venezuelans in the world, according to the Interagency Coordination Platform for Refugees and Migrants.
"The women who have received their diagnosis in Peru have had advanced stages of the disease, because here the diagnoses are not quick, in addition to the fact that [lupus] is not a common disease," says Martha Fernández, president of the Association for the Protection of Vulnerable Populations (APPV).
In 2020 Karina was diagnosed with Sjögren's syndrome, a disease in which the body's immune system attacks its own healthy cells that produce saliva and tears. "At the postas [local health centers] they won't treat me. What the nurses tell me is that they don't know about Sjögren's," she recalls.
Jenny says that ever since she got lupus, she has felt that society discriminated against her. The disease presented itself as seizures while she was a university student.
"We traveled (from Piura) to Lima, but there were difficulties to transport me. The cars did not want to take me. At the hospital in Lima, we went to the emergency room. They did not want to treat me because I looked fine, but I was not fine. I didn't know who I was, or who I was with," she says.
She was hospitalized for 15 days and developed psychosis. This is how lupus manifested itself in her body. In addition, Jenny says that lupus brings on depression.
According to the latest census of the National Institute of Statistics and Informatics (2017), in Peru there are 828,894 people who self-identified as Afro-Peruvian. Among the states with the highest number of Afro people is Piura, where Jenny is from. She identifies herself as a mestizo and Afro-descendant woman.
There is research that indicates that people of African descent are more prone to develop diseases such as lupus. But that can spark prejudice and make people forget other diseases that occur in this population, Dr. Gabriela Noles, Afro-Peruvian physician and master’s in public health at the Harvard School of Public Health, points out.
"If you evaluate two different women you are going to have an inequality that is determined by their history or the opportunity to have specific life conditions. There is this myth that Black people have a greater genetic burden to develop certain types of diseases and it is not true," she says.
Racism and structural discrimination, as well as the use of discriminatory and violent language that reinforces prejudices and stereotypes and stigmatizes women of color, exclude them from medical care or offers them care marred by inequality.
The absence of medical services in remote and rural towns and villages also excludes women from skilled care. It happened with Jenny, when she had to travel to Lima, a trip of more than 15 hours. And it happens to women in all the provinces and districts far from their state capital or from the well-equipped medical centers in Lima.
"When patients are treated in the right way, they can live like anyone else. To the extent that we educate patients, they will know how to conduct themselves better," explains Dr. Oswaldo Castañeda, a rheumatologist with almost 40 years of experience treating lupus.
"That's what the world needs, to become aware. There is a conscience that is there, but it is asleep. We must awaken awareness because I am not the only one," Karina emphasizes.
For Jenny, the disease is an opportunity to encourage other lupus patients and to receive support from her family. "We can't let this disease beat us. It's something we already have for life, so we have to keep going."
Gumelín is hopeful about the future and especially about the possibility of treating her kidney disease.
"There is a possibility of starting an investigation with my case, once I have the transplant. The doctor told me that they are evaluating the behavior of my lupus before and after the operation. There is very little information and a lot to investigate. I am happy if I can help with that. Truly, God willing, they will find a cure in this lifetime."