By Morgan Brown, Executive Director, Montaña de Luz.
This is the first installment of a series of blog posts entitled “Building a Future.” We will highlight the role of Montaña de Luz in building a better future for families affected by HIV in Honduras.
In the year 2000, leaders of 191 nations met at the United Nations in New York and agreed upon eight ambitious “Millennium Development Goals,” with the vision of setting a standard for human rights and greatly enhancing the well-being of individuals throughout the world by 2015.
Every UN member state agreed, under Millennium Development Goal number six, to combat HIV/AIDS—specifically, to achieve universal access to treatment for HIV/AIDS for all those who need it by 2010, and to halt and begin to reverse the spread of HIV/AIDS by 2015.
In the year 2000, HIV/AIDS was still a death sentence for millions of people around the world. There simply was not a strong enough infrastructure in many countries to combat the spread of HIV. Millions of people suffered agonizing deaths from AIDS, the most severe phase of HIV infection. Access to anti-retroviral treatment, or ART— the medication needed to suppress the HIV virus and stop the progression of HIV disease—was extremely limited in many countries around the world.
Montaña de Luz formed in 1998 as a refuge for children living with HIV/AIDS in Honduras. At the time, over 60 percent of new HIV infections in Central America were reported in Honduras, despite the country only containing 17 percent of the region’s population. Mother-to-child transmission of HIV was extremely high compared with other countries, and stigma of the disease was rampant. Montaña de Luz began as a respite care facility. It was a place for children with HIV to live the rest of their days on Earth with dignity, free from stigma and poverty, in the best care possible, on a beautiful mountain of light.
In many ways, the progression of Montaña de Luz over the past 18 years charts the course of HIV/AIDS in Honduras and the world. When anti-retroviral treatment became available in 2003, we went from “hospice” to “home.” Our kids were able to go to school, to run, to play, to dream like any other child. The same happened incrementally throughout developing countries that had previously lacked access to ARV treatment.
Thanks to the hardworking nurses of Montaña de Luz, our children attended doctor visits, took their anti-retroviral medication, and learned to manage their care. Globally, by June 2014, an estimated 13.6 million people living with HIV were receiving antiretroviral therapy (ART), an increase from 800,000 in 2003 (UN Development Goals, 2018). In Honduras, a new HIV law and better coordination between the Ministry of Health, hospitals, and clinics led to reduced rates of HIV transmission—down 29 percent since 2010. There have been pronounced reductions in mother-to-child transmission in Honduras. Each pregnant mother served in a clinic or hospital must now have an HIV test, leading to more focused care.
We are on the precipice of a new era, both at Montaña de Luz and in broader HIV/AIDS care. Treatments are improving, allowing us to manage HIV as a chronic condition. The CDC just announced that when the viral load of an HIV positive individual is “undetectable,” (this generally happens when an individual takes his or her ARV therapy according to plan), there is 0% chance of passing HIV on to another individual. Just twenty years ago, this milestone would have been unimaginable. In the United States, we are pioneering HIV prevention medication, called pre-exposure prophylaxis, or PrEP. It is a way for people who do not have HIV but who are at substantial risk of getting it to prevent HIV infection by taking one pill every day. These are just a few of many exciting developments in HIV care.
In spite of all this progress, only 42% of HIV positive individuals in Honduras are receiving anti-retroviral treatment (CONASIDA Plan Estratégico Nacional, 2014). 58% are not receiving even the baseline anti-retroviral treatment! Among people living with HIV in Honduras, only 39% had suppressed viral loads as of 2016 (UNAIDS – Honduras, 2018). While progress has been made in mother-to-child transmission, only 51% of HIV positive mothers receive the appropriate ARV treatment to reduce the risk of passing on HIV to their child (UNAIDS – Honduras, 2018).
The actual prevalence of HIV in Honduras could also be worse than what is reported. Only 12.6% of individuals between 15 and 49 have been tested for HIV and know their results (CONASIDA, 2014). Many HIV positive individuals do not know about HIV, are unsure how to get tested, or are afraid to get tested. Rural areas are extremely hard to document, census data is less reliable, and many hospitals still use handwritten documentation systems. All of these factors affect the reliability of our baseline statistics on HIV in Honduras.
There are reasons why HIV has remained so difficult to eradicate in Honduras. There are many “barriers to care” which lead to lower rates of testing, diagnosis, treatment, and adherence, despite commendable efforts from the government.
The biggest barrier to care is the stigma that still surrounds HIV in Honduras. Many people in the country still believe you can contract HIV by kissing or eating from the same plate as someone who is HIV positive. This is categorically false. HIV positive individuals are often cruelly termed “sidosos,” roughly translating to “AIDS-ridden,” and are persecuted in school or the workplace. Children from Montaña de Luz, just from being associated with MdL, have been bullied in school. Adults living with HIV have lost their jobs, even though they pose no threat at all to their coworkers or clients. We have served families where stigma is pervasive within the family unit. Children are thrown out on the streets, or mothers are afraid to tell their spouses about their condition—afraid the father will leave the family.
Stigma surrounding HIV in Honduras has led to lower rates of testing, diagnosis, and follow-up care. At Montaña de Luz, we are actively working to break down stigma through our “Charla Luz” or “Light Talks” program in which our youth ambassadors go out and teach communities about HIV. Our mission is currently expanding to serve families “off the mountain” through home visiting, with the objective of reducing stigma within families. We want to help more individuals get tested. We want families to easily locate and access HIV resources within the healthcare system. Ultimately, we want to greatly enhance adherence to ART and lower incidence of HIV within vulnerable communities. Our caregivers and interdisciplinary staff have over 16 years of experience breaking down this stigma within the extended families of our children. We want to utilize this knowledge and skillset, go beyond our walls, and change the perceptions of HIV for entire communities.
There are many other barriers to HIV care in Honduras—many of which our children and their families face on a daily basis. Honduras has the second highest poverty rate in the Western Hemisphere behind Haiti, high rates of crime, and political instability. Vulnerable populations have much higher rates of HIV in Honduras, including men who have sex with men (prevalence of 11.9%), sex workers (prevalence of 5.3%), transgender people (prevalence of 11.9%), the Garifuna population, and minority communities (UNAIDS – Honduras, 2018).
In addition, there are still access issues—rural and impoverished areas may not have a clinic close by, individuals lack safe public transportation to get to their medical visits. Co-pays for supplemental medications are high, so individuals stop treatment all together. Clinics and hospitals have funding to provide direct care, but often lack the resources to provide in-person social service support for HIV+ individuals who stop care due to one of these barriers.
In the coming years, Montaña de Luz hopes to meet children, youth, and families where they are and address their individual barriers to care. We want to go beyond our walls and be something greater– to walk the path of Jesus Christ, to reach out to the most vulnerable, who have been left behind or thrown out by society—even if this is not the most popular or surest path. We want to become a coordinated care provider— the “glue” between vulnerable children, youth, and families affected by HIV and the public health system. This is the gap in services—it is what the country needs.
HIV care has advanced so much in the past twenty years, and it will continue to do so in Honduras in the years to come. The focus will shift from the ART medicines themselves— they will become even more accessible and effective— to reducing stigma, improving access, and adherence to care. At MdL, we want to be at the forefront of this change and shift the paradigm in HIV care. We want to put the focus on individuals and families, giving them a voice in their care and sowing the seeds of deeper change.