I recently had the opportunity to meet several Achhami women who were receiving services from a local non-profit organization with which Nyaya partners. All of the patients are HIV positive and receive support services at home through our partner organization. The organization provides much-needed assistance in a number of psycho-social domains to these patients, however does not provide actual HIV treatment, which in Nepal is relegated to certain government-approved treatment centers.
Prior to meeting these patients, we had a very interesting conversation with our partner organization about the services offered, and heard about the important support the ~500 patients they serve receive throughout the Achham district. Nyaya’s part of the partnership is that we are one of the two government-approved centers for HIV treatment in the district, and some of these patients receive their treatment at Bayalpata Hospital.
What was impressive about the afternoon’s meeting however, was not hearing about the excellent support services our partner offers, nor meeting the truly dedicated team that carries out the work (indeed we’ve met on numerous previous occasions). Following our discussion with the support team, we spoke to the patients, and as has happened many times before, were disappointed to find that what we and our partner were providing was in gross misalignment to what our patients told us they needed.
When we asked what challenges these patients faced in continuing their anti-retroviral (ARV) treatments (the drugs necessary to treat HIV infection), we heard three primary concerns:
1) Transportation to visits: Achham is a district of 75 village development committees (i.e. villages), yet there are only two government-approved treatment facilities in the district, both of which are in the northern part of the district (see map – “H” for hospital where the two treatment centers are). We heard from one patient that she had to walk 3 days to get her HIV medications, and despite the support services offered to her at home, there was no transportation or stipend available to get her medications.
2) Frequency of visits: Patients are required to come to one of the two treatment facilities once each month to get their medications. For women who have full-time jobs tending their fields, while simultaneously taking care of their children, further complicated by the great distance many have to travel, this is frequently an insurmountable barrier to getting effective and consistent treatment.
3) Lack of poverty mitigation: Support services aside, when patients are forced to choose between spending their time putting food on their tables or traveling to a clinic on a monthly basis, in an area with such endemic poverty, basic needs often make regular travel to clinics impossible.
Nyaya has worked for the past 4 years to expand access to HIV treatment as well as a community health worker network that might be able to assist patients by delivering medications to their homes (instead of patients coming to the hospital). Nonetheless, neither Nyaya nor the other government services in the region have yet been able to expand services enough to address these barriers to care.
While the treatment services Bayalpata Hospital provides has more than doubled the HIV treatment capacity in the region, three years of asking our patients what challenges they still face has underscored the barriers that persist, and that frequently make the treatment we offer an irrelevant option.
As the meeting ended, we said our thank yous and goodbyes, and walked out. As I was leaving, I noticed that one of the patients was picking up the left-over biscuits from the meeting’s refreshments, and was passing them back to the other patients behind her. Each patient had a small plastic bag that they were filling with the biscuits and crumbs – a harsh reminder of how far indeed we still have to go before our treatment programs will be truly effective.
Ryan Schwarz, MD, MBA, is a former director of Nyaya Health and is currently on the Board of Directors. He is a resident physician in Harvard University’s Internal Medicine and Pediatrics Program and fellow in the Global Health Equity Residency Programat Brigham and Women’s Hospital and Children’s Hospital of Boston.