“It Is Going to Change Your Life!”: How Changes in Medical Policy Influence HIV-Positive Patients

Purposes: Health policy research has long been dominated by quantitative research paradigms, especially economical approaches. Although this trend of research has applied various sophisticated statistical tools to better evaluate the impact of policy changes, it tends to focus only on one aspect of human behaviors as its outcomes, leaving us very little understanding about how other domains of human life might be transformed as well by policy changes. Therefore this study, using a proposed policy change in medical coverage in Taiwan as an example, aims to explore and identify the structure of potential life changes expected by a group of people living with HIV/AIDS (PLWHA) on free medications.     

Methods: Using purposive sampling strategies, 30 PLWHA were recruited through several social service agencies in Taiwan to talk about their perceptions of a pending policy change. The new policy required all people on free HIV medications to co-pay for their treatments. All the participants completed one-on-one in-depth interviews which typically lasted for 2 and a half hour. All but one interviews were audio-taped and transcribed verbatim in Mandarin. Two Mandarin-speaking researchers independently coded the transcripts, identified patterns, and discussed to resolve discrepancies in coding and interpretations.     

Results: Five themes emerged from the interviews: 1.) Changes in affordability: for those who lived under poverty, copayments could make their “originally tight budgets even tighter.” Others who were more well-to-do also expressed anxiety over increasing copayments and possibility of future job loss that would make medications no longer affordable. Some people might consider switch their providers or treatment plans to manage their budgets. 2.) Changes in motivations: several PLWHA expressed that the policy change might decrease their motivations for treatment continuation because they needed to “pay for something [they] don’t like from the beginning.” 3.) Changes in mental well-being: some PLWHA considered borrowing money from family and friends, or seeking assistance from social service agencies to cover their monthly copayments. However, this strategy might expose them to moral judgments from those who can make decisions for financial support. These moral judgments could damage PLWHA’s mental well-being, especially when their relationships with financial sponsors are strained due to HIV stigma. 4.) Changes in work: some PLWHA reported they might take additional jobs to pay for their copayments. However, this strategy might be constrained by their health conditions and interrupt their medication schedules. 5.) Changes in perceptions of discrimination: many PLWHA expressed that they felt being discriminated against by the government. Through the policy change, they felt they were symbolically “separated out” from rest of the patients with other illness and were required to pay additionally for their treatments, on top of all the payments equally applied to all patients.

Implications: Policy changes not only influence accessibility of treatments, but can bring changes to various domains of life involving motivations, emotions, and social relations. To obtain more comprehensive understanding of changes brought about by policy changes, policy research should seek to situate policies within PLWHA’s dynamic living experiences and simultaneously take into considerations of different life domains.