Additional authors include: Felipe Vilcachagua and MaR León
Social inclusion and access to quality healthcare continue to be challenges in a middle-income country like Peru, especially in vulnerable populations such as those affected by TB, living with HIV, and LGTBI+, who not only face stigma and discrimination, but also an exclusive social environment. This reality was more noticeable with the arrival of COVID-19. Below is the opinion of the community leaders, belonging to the Impacta Community Advisory Committee:
For people affected by Tuberculosis
César Alva, coordinator of the National Network of Organizations of People Affected by Tuberculosis, reflects: “there was no direct supervision by public service health personnel for people with tuberculosis during the COVID-19 pandemic. Many dropouts to treatment were generated, there was no support. Now the consequences of these abandonments are being seen”.
Mercedes, General Director of the Association of People Affected by Tuberculosis (ASAT), complements what César said, indicating: “tuberculosis is linked to poverty, inequality, overcrowding. In recent years, a biomedical approach has predominated. Addressing it including social factors is still pending”.
Along the same lines, Mercedes highlights the need to have mental health services, and adds: "there is a lack of a comprehensive approach that includes mental health, which includes continuous, higher-quality psychological therapies."
Mercedes also comments on the need for health personnel in public establishments to show willingness and warmth when doing their work. Recalling his experience, he recounts: “the same day my diagnosis was revealed, they explained everything to me. I remember the nurse talking, her hands moving and her mouth saying something. But I don't remember anything he said. All the information was given immediately. I didn't catch anything due to shock. I was completely ignorant when I started the treatment, until I contacted a tuberculosis organization, where I was able to learn”.
For People Living with HIV/AIDS
People living with HIV/AIDS (PLWHA) experienced difficulties in continuing their treatment in the midst of the pandemic. Maria Luz Quispe, a member of the Network of Women Living with HIV, recounts “people had great difficulties collecting their treatments, supplementing their diet without the support of the State, traveling to their hospital appointments, etc. The same community had to enter into dialogue with the HIV/AIDS Program and create a contingency to care for PLWHA in other hospitals, ones that are closer to their homes. The State did nothing to combat this problem, it was us as a community and in alliance with NGOs that had an impact”.
Maria Luz adds that a great difficulty in Peru is access to free health insurance that guarantees adequate care for all people. In the case of the Comprehensive Health Insurance (SIS) provided by the Peruvian State, the following barriers are presented: “If you had a refrigerator at home, it was impossible to access the SIS, considering that the person had financial resources. It was not analyzed that as a result of complex diseases such as HIV or Tuberculosis and even COVID, the family group could end up in poverty as a result of this disease”, Quispe comments, “the PLHIV community has had to hold many meetings, dialogues with the Ministry of Health and the SIS. Now, thanks to these efforts, if you are a person diagnosed with HIV or Tuberculosis, you have direct access to the SIS”.
On the other hand, Maria Luz also demands greater participation of cisgender women in clinical trials of HIV treatment in Latin America: “All the studies are based on how men react, with a few exceptions. There should be studies dedicated to drug reaction in cisgender women.”
For LGBT+ Communities
In another social aspect, there is still a pending issue, the approval of equal marriage, the mainstreaming of the gender approach, the visibility of trans communities, among others.
Regarding discrimination against the LGBT+ population, Sascha Reinstein, a young man from a non-binary community, believes that LGBT+ communities "face violence and discrimination both in the media and on a daily basis." However, she notes that not everyone suffers in the same way, due to racism. “The discrimination that a gay, white man who has achieved professionalization and lives in the capital city experiences is not the same as that experienced by a trans- racialized woman who engages in sex work,” concludes Reinstein.
Erika Trejo, a trans woman and President of the Impacta Community Advisory Committee, adds “there is a prejudice among health personnel in public establishments, as well as in Peruvian society in general, regarding trans people. That we are not 'correct' people, that we have made a mistake” comments Trejo, “sometimes the health personnel refuse to call us by the name that represents us, they call us by the name that appears on our identity document. It's intentional, in the form of mockery."
This situation worsened with the arrival of the pandemic, as reflected by Maria Luz: “they [trans women] could not go out to work, they had no food, no access to work, and even less to health services. A lot of work had to be done, with organizations and NGOs , so that the compañeras had minimal relief during the years of the COVID pandemic”.
Finally, regarding health research, Erika believes that greater participation of the trans population should be promoted: “trans women are the most vulnerable to HIV/STIs in the country, it is important to promote their participation”.
Felipe Vilcachagua and Cesar Bayona are Community Educators at the Barranco CRS, part of the IMPACT CTU, and MaR León is the Head of Community Involvement in the IMPACTA CTU in Lima, Peru.