NASLHAN

INTRODUCTION

National Association of Student Living with HIV/AIDS in Nepal is a non-political, non religious, non-governmental, non-profitable, autonomous network of Student Living with HIV/AIDS and as such, a platform for collaboration, cooperation, joint action and collective endeavor between NASLHAN and HIV/AIDS organizations in Nepal.

NASHLAN is established in 2014 in order to combat this epidemic with the joint effort of SLHAs in Nepal. The common goal was “To unite all those living with the virus in Nepal and fight back”. 

AIDS Awareness and Challenges

People living with HIV/AIDS in Nepal face social isolation, medical neglect, and physical and emotional abandonment. Though the Nepali government offers HIV medication and other treatment programs free of charge, these services are difficult to access for patients in remote villages. Some hospitals still refuse care to affected people. Many children only receive a diagnosis after their fathers, and sometimes both parents, have died of the disease. Tragically, low diagnosis rates have resulted in some mothers unknowingly passing the virus to multiple children.

These children are at extremely high risk. HIV/AIDS is one of the most stigmatized illnesses in Nepal. Schools shut their doors. Non-infected children won’t play with them. And they’re banned from many village activities. As kids living with HIV/AIDS become desperately sick with opportunistic diseases and feel brutally ostracized, their quality of life plummets.

 (1) Scarce specialized programs for people living with HIV/AIDS, 

(2) limited access to available programs and resources, particularly for families in geographically remote villages, 

(3) cultural stigma and superstition around HIV/AIDS status,

 (4) low and late diagnosis rates, especially for rural communities, 

(5) parental death leaving behind orphan children unable to access care, 

(6) large families prioritizing uninfected children, 

(7) necessarily-long hospital stays for children receiving care, and 

(8) endemic malnutrition throughout the country. 

Pediatric malnutrition, the focus of many of NASLHAN’s programs, is a systemic issue impacting children throughout Nepal. But it poses a special threat to immunocom promised children like those living with HIV/AIDS.

NASLHAN works closely with many other local organizations serving communities living with HIV to respond to these problems as effectively as possible.

AIDS Awareness in a Developing Nation

In developing nations like Nepal, there is often a sharp divide between urban areas (which are beginning to access and enjoy the technological and economic advances available in industrialized nations) and the rural areas (where infrastructure—like roads, running water, electrical connectivity, and internet access—does not yet exist to allow those advances to spread equitably).

Parents and caregivers for children living with HIV/AIDS in remote Nepal face heartbreaking dilemmas. True subsistence farming—an economic model nearly forgotten in the developed world—is still the reality for many throughout Nepal. Subsistence farmers grow food crops not to sell in marketplaces, but to feed themselves and their families throughout the year with little, if any, surplus. Many of Nepal’s subsistence farmers struggle to produce enough food throughout the year.

All family members must participate in farming as much as possible. Ideally, they would manage to produce more in crop yields than they consume. Failing to do so may result in months of hunger for the entire family. In families wherein a father has passed away, and in which a mother of young children has learned (having become extremely sick herself) that she is now living with HIV/AIDS, the illness itself is only a piece of the greater extended family’s dilemma. This is especially if accurate information about HIV is not available in the community. And if children at infected, the situation is worse.

Once the trip is made and the diagnosis of HIV/AIDS is confirmed, often not only for the child but for the parent as well, these caregivers must weigh the prognosis as they understand it culturally. They must bear in mind the stigma to come, the impact it will have on the entire family, and the seeming impossibility of stable, long-term medical care for a family living many rugged miles from the nearest provider.

Families who try to manage their child’s illness often struggle, and many fail, in a system without a safety net. This is no one’s fault. The challenge of pediatric HIV, within already-demanding circumstances, is devastating.

• Pediatric AIDS Awareness

The children who visit the New Life Center are referred to NASLHAN either through Nepal’s hospital system (when a child arrives terribly sick and their HIV status is discovered) or through local HIV/AIDS advocacy organizations for adults (who are approached by caregivers searching for resources). Because pediatric HIV/AIDS requires specialized care, these groups know to send these children to us. Nepal Youth Foundation is highly trusted within the network of HIV resources in Nepal.

An average initial stay at the New Life Center lasts for three months. Families served here return fairly regularly for support. Because children’s immune systems are not fully developed, children living with HIV get much sicker than adults. And they do so more often as well.

1. AIDS Awareness During COVID-19

When the COVID-19 pandemic began, we realized that the New Life Center patients would be safer in rural isolation than they would be in Kathmandu, and we sent them to their home villages. Only a few children remained at the NASLHAN—those living completely under NASLHAN care.

We focused our efforts on maintaining contact with families over the telephone. Our staff often scheduled times when caregivers could visit a location with a stable phone connection. Caregivers would share information on their child’s health status, and our staff members would provide them with advice and encouragement. This included advice to visit the nearest hospital when necessary, and the financial assistance necessary to do so.

In early 2021, the New Life Center staff organized a massive nutritional relief delivery trip. Our staff used as much care as possible and coordinated with four community-based NGOs working on HIV. We made deliveries in seven different districts across Nepal. Altogether, 167 families of children living with HIV received nutrition relief packages containing rice, legumes, oil, eggs, and other essential food items, plus a special hygiene kit to protect against COVID-19.

As we coordinated this care, our NASLHAN team began to see new solutions to old problems.

1. Expanding Access with Home-Based Care

In 2021, the New Life Center is beginning a new phase of development, incorporating lessons learned during the pandemic into an expanded program beyond the walls of our dedicated facility.

Residential treatment will remain a valuable piece of the New Life Center’s work. However, using our connections to other grassroots organizations, we are expanding our outreach capabilities.

New elements for the program will include more regular nutritional delivery visits, wrapped into our existing medication deliveries. These visits will now involve check-ups for the children. Our hope is that this will allow NASLHAN staff members to catch warning signs early, making return trips to the New Life Center unnecessary. Home visits will also allow our staff members to make more personalized recommendations to families. These may include advice ranging from thoughts on hygiene best-practices to reasonably-simple garden additions. All should vastly improve family nutritional health.

Mothers in need of income generation help will also become eligible for some of our programs aimed at small business start-ups.

Previously, counseling services have focused on those currently staying in the New Life Center. Now, counseling will be available to children and caregivers over the telephone. This allows for a stable, sustained counseling experience which will help families cope with day-to-day challenges.

In coordination with our hospital friends and grassroots partners, NYF will expand our AIDS Awareness campaign efforts. Our team will share accurate information about the illness—including information about preventing the spread of HIV—in the hopes of alleviating cultural stigma. We will provide a telephone helpline for those hoping to keep their status private. And we will produce and distribute Nepali-language educational resources for caregivers.

Our hope is that by expanding our reach in this way, we can save and enrich many more lives—and help Nepal continue its progress in addressing this global challenge.

Issues and Challenges: Priority Areas

Addressing the HIV epidemic in Nepal requires immediate action and long‐term continuity and sustainability. The following actions are essential:

-Use data (e.g. behavioral and size estimation) to enhance strategic prioritization and resource allocation.

-Demonstrate the need for an expanded and coherent response. Also strengthen management for effective collaboration and coordination between stakeholders (government, development partners, NGOs, etc.) and improve implementation.

-Expand coverage of interventions and improve the quality and effectiveness of services provided to MARPs including female sex workers, injecting drug users, and MTCs.

-Scale up advocacy, behavioral change activities, and health promotion interventions for young people, mobile populations, female sex workers, IDUs, and MTCs. Community based organizations have to be strengthened to take up these activities.

-Implement harm‐reduction initiatives for IDUs and their partners and promote condom use in casual and commercial sex. Address opposition to scaling up comprehensive harm‐reduction measures such as the distribution of clean needles and syringes to IDUs.

-Strengthen biological and behavioral surveillance to enhance understanding of HIV, sexual behaviors, and healthcare‐seeking behaviors related to HIV and STIs.

-Encourage openness in addressing risky behaviors and protect vulnerable populations. Efforts to increase knowledge, reduce stigma, and promote positive attitudes and norms about safe sexual behaviors are critical. There is an immediate need to push the HIV bill to create an enabling environment

-Provide comprehensive care for people living with HIV and AIDS, including widely available voluntary counseling and testing facilities, provisions for treating opportunistic infections, rolling out of quality structured treatment, and adherence to monitoring.

Core values 

• Put people first
• We are independent and ultimately accountable to people living with and affected by HIV.
• We weigh and measure our actions against their impact on people’s lives.
• We champion an environment that empowers all to be part of the conversation.
• We respect the lived experiences of all and foster a diversity of perspectives.

Build bridges & collaborate

• We unite disciplines, sectors and people at all levels to drive progress in the HIV response.
• We build trust by sharing knowledge and being transparent.
• We hold ourselves individually responsible for the collective excellence of our work.
• We follow the science and promote evidence-based dialogue.
• We intentionally seek out data to inform our attitudes, decisions and actions.
• We evolve by challenging our biases and encouraging curiosity.