AIDS Awareness Month & NYF’s New Life Center
AIDS Awareness Month occurs each October, and is an opportunity to share science-based, factual, and clear information about the disease – as well as ways members of the public can help those impacted.
Today, over 37 million people live with HIV worldwide. An estimated 50,200 of these people live in Nepal. Some of those infected are children.
The first case of HIV in Nepal was diagnosed in 1988. Within that same year, the Nepalese government launched its first response – the National AIDS Prevention and Control Program, led by committees based in both the national and local governments and health services.
But since the beginning, the strongest groups addressing HIV in the country have been community-based organizations working to ensure government resources reach the individuals who need them.
(Above, in the months before COVID, caregivers and their children pose with the nurses who have worked to stabilize their health. Please note: Due to the extreme level of stigma associated with HIV in Nepal, we take special care to preserve the privacy of our New Life Center children and families. The faces of these individuals are blurred throughout this article. The stories shared below are true, though we have changed all names and some identifying details. Children pictured are not the children from these stories.)
The New Life Center
NYF first joined the fight against HIV in 2006, stepping into the network of community organizations to serve a vital role delivering special care to children living with this formidable virus.
NYF established the New Life Center (NLC) to provide specialized, supportive care to Nepalese children living with HIV, restoring their bodies to health and making their lives not just longer, but more joyful. The NLC also benefits the caregivers of these children, educating them on hygienic practices, nutrition, and the effective management of HIV, and providing group and individual therapeutic interventions in partnership with Ankur Counseling Center. After discharge, families unable to access the free medicine provided by the Nepalese government benefit from delivery services by NLC staff.
New Life Center staff members include cooks, nurses, a nutritionist, a driver, and more, with hospital-based pediatricians visiting at least once a month during non-pandemic times. (We shared stories about our remarkable New Life Center nurses in 2020. Read more here!)
(Ragav*, 10, was diagnosed with HIV soon after his mother passed away due to AIDS six years ago. His father brought him to a Kathmandu Hospital for treatment after a series of regular childhood scrapes refused to heal – and was dismayed to discover how sick his son truly was. The two were referred to the New Life Center by the hospital once Ragav’s treatment plan was in place, and during his stay, Ragav regained his strength and energy, lowered his viral load, made friends with other children, and began catching up on his schoolwork. He is now in the 4th grade.)
Capable of treating up to 18 child-mother pairs on-site at a time, the NLC strives to provide holistic residential care to between 50 and 60 children living with HIV each year (often alongside their mothers, who are often also living with HIV). A few children who have lost their parents and have no other options for guardianship remain in NYF care on a permanent basis. One-week residential services are provided to an additional 20 children during their routine follow-up visits to Kathmandu. Besides medical care at the NLC, patients also receive psychological support provided in partnership with NYF’s Ankur Counseling Center. For discharged patients unable to access antiretroviral medication refills, NLC staff members deliver government-provided medication to remote villages throughout Nepal, taking 180 such trips via motorbike in 2019, before the COVID-19 pandemic.
AIDS Awareness Means Knowing the Challenges
People living with HIV/AIDS in Nepal face social isolation, medical neglect, and physical and emotional abandonment. Though the Nepalese 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 are only diagnosed 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 village activities. As kids living with HIV/AIDS become desperately sick with opportunistic diseases and feel brutally ostracized, their quality of life plummets.
(No child enjoys taking medicine – but the kids at the New Life Center quickly learn how much better they feel when they are up to date on their antiretroviral medication. The nurses here have heard many children report, with surprising maturity, the high value they place on these life-saving resources.)
Problems related specifically to HIV/AIDS in Nepal – in particular where children are concerned – include (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 NYF’s programs, is a systemic issue impacting children throughout Nepal, but it poses a special threat to immunocompromised children like those living with HIV/AIDS.
NYF 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 that has been 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, and a family’s level of wealth or poverty is measured in part on how many months of the year they can achieve self-sufficiency.
(Raghavi*, 12, lost both parents to AIDS. Her grandmother is providing every opportunity possible to ensure Raghavi can keep healthy and receive a good education. The two live frugally off of Raghavi’s grandmother’s modest pension, and earn a bit of extra money here and there raising goats. They were staying at the NLC in March 2020, when the COVID-19 lockdowns began, and had to return to their home village before our staff members would prefer. During the lockdown, NLC staff members stayed in close contact with Raghavi’s grandmother, giving the best advice they could. When restrictions loosened a bit in December 2020, the two returned to complete their stay, and the 7th grader’s health was finally stabilized.)
All family members must participate in farming as much as possible – ideally managing to produce more in crop yields than he or she consumes. 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 – especially if accurate information about HIV is not available in the community. The situation is worse still if children have also been infected.
For many, the choice of whether an adult should travel hundreds of miles to Kathmandu to find hospital care for one of their children – even care that is provided free of charge – is the impossible choice between healthcare for one family member versus food for them all. 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 NYF either through the Nepalese 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.
(On-site tutors and child development experts ensure the children at the New Life Center receive opportunities for creativity, learning, stimulation, and play. If a stay coincides with a festival, the children enjoy as much fun as their health will allow! NYF is determined to make the New Life Center a safe, home-like environment for those recovering here – ensuring that even times of poor health are as comfortable and “normal” as possible.)
An average initial stay at the New Life Center lasts for three months, and 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. These children are exposed to all the same illnesses as other children, but even when their HIV is well-managed, their weakened immune systems struggle to fight effectively against common ailments like the flu, the common cold, urinary tract infections, and more. Tuberculosis and pneumonia are special dangers for Nepalese children living with HIV.
Getting a child living with HIV safely through their younger years and across the age-15 threshold is a tremendous undertaking – but it is extremely worthwhile to see these children regain their health, engage with their educational opportunities, and chase their dreams. For many families, the New Life Center is an absolutely crucial piece of their journey with HIV, and our role in their lives lasts for years. When each of these children reaches the milestone of their 15th birthday, they are considered adults in HIV-treatment terms, and NYF facilitates connections with their local organizations for adults, ensuring seamless, continued support for the duration of their lifetime. These young people are full of promise and opportunity, having learned important skills for maintaining their health and having found confidence in their own worth as human beings, in spite of intense cultural stigma.
Through extensive awareness campaigns and other interventions, Nepal’s government has made remarkable progress in lowering the rates of mother-to-child HIV transmission. Far fewer cases of pediatric HIV are being diagnosed in recent years, and resources for these individuals are easier to access.
Unfortunately, many families are still unable to reach the care available in Nepal – including the significant time investment required to visit the New Life Center. This reality has been a challenge the New Life Center has grappled with in recent years, in the hopes of expanding our reach into more remote regions of Nepal. Since early 2020, at the start of the COVID-19 pandemic, our focus on this challenge has sharpened.
(Relaxing in the sunshine in a New Life Center courtyard is an enjoyable, healthy activity. Vadish*, 15, first came to the New Life Center when he was diagnosed with HIV at age 4. His mother was diagnosed at the same time, and spent months in the hospital before passing away from tuberculosis and meningitis – infections that raged out of control due to AIDS. Gentle, playful Vadish responded well to treatment and was taken in by relatives once his health had stabilized. When he was 9 years old, he had another health scare and spent another several months at the New Life Center. Staff members were delighted to see how much he had grown and learned – when his health was strong, he generally achieved top marks in his classes! His personality had not changed, and as his health improved, he began taking younger NLC children under his wing, comforting them and giving them encouragement. Now that is is 15, his care will shift to a group providing HIV resources for adults. Staff members hope he keeps in touch – but they are thrilled with how far he has come.)
AIDS Awareness During COVID-19
When the COVID-19 pandemic began, we were forced to send the New Life Center patients to their home villages, realizing that they would be safer in rural isolation than they would be in Kathmandu. Only a few children remained at the NLC – those living completely under NYF’s care.
We focused our efforts on maintaining contact with families over the telephone, often scheduling 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 in turn provided them with practical advice and encouragement – including 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, using as much care as possible and coordinating with four community-based NGOs working on HIV. Deliveries were made 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 and pivoted other NYF programs, staff members and leaders at the New Life Center began to see new solutions to old problems.
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 NLC 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 that may 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.
(The New Life Center will continue serving as an important residential care facility, as well as the base of operations for the expanded programming.)
Ankur Counseling Center’s role in this work will grow. 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 – allowing 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, in the hopes of alleviating cultural stigma by sharing accurate information about the illness with rural communities – including information about preventing the spread of HIV.
Besides all this, we will provide a telephone helpline for those hoping to keep their status private, as well as producing and distributing 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.
To help us commemorate AIDS Awareness Month at Nepal Youth Foundation, please share our message on your social media, including the hashtags #AIDSAwarenessMonth and #LoveWorks.
Do you know anyone interested in supporting causes like global health or pediatric HIV healthcare? Take a moment this month to reach out and share our story. We would love to connect!