1. “Lord, I want to take a break. I’m tired of taking pills”
Barriers to medication adherence remain in the era of potent HIV therapy
Methods
Results
Conclusions
Acknowledgements
Introduction
Shawn C.T. Jones1, Jazmin I. Brown1,AbigailT. Panter1, Eric M. Maiese2 and DavidA.Wohl1
1 The University of North Carolina  Chapel Hill, North Carolina  USA,
2 Merck & Co, Inc.Whitehouse Station, NJ  USA
• Advances in HIV therapy have resulted in long-term control of viral replication and
increased survival of those affected with HIV.
• However, a significant number of those on antiretroviral therapy (ART) experience
virologic failure, often as a consequence of sub-optimal adherence.
• Several studies have identified barriers to ART, but there are few tools clinicians can
use to predict patient adherence.
• The Estimation Antiretroviral Medication Adherence (ESTEEM) Project aims to
develop a brief clinical instrument to assess likely future ART adherence
• As an initial step in the development of the ESTEEM instrument, we conducted a
series of focus groups among persons living with HIV (PLWH) and receiving ART.
• 56 PLWH (21 female, 34 male, 1 transgender) participated in six focus groups in
three distinct regions of North Carolina.
• Focus group guides were developed to explore perceptions regarding facilitators and
barriers to ART adherence.
• Themes across focus groups were independently coded by two members of the
research team; final list of themes consolidated based on rater agreement.
Site 1 (n=18) Site 2 (n=19) Site 3 (n=19)
Age in years, mean
(range)
48.88 (42-57) 52.0 (23-67) 47.2 (40-60)
Race/Ethnicity,
N (%)
Black, 17 (94.4)
NativeAmer, 1 (5.6%)
Black, 12 (63.2)
White 5 (26.3)
Other 2 (10.6)
Black,14 (73.7)
Hispanic, 3 (15.8)
White, 2 (10.5)
Years living with
HIV, mean
20.06 16.33 11.2
Number on Initial
ART regimen (%)
7 (38.9%) 5 (26.3%) 8 (42.1%)
Number with
insurance (%)
14 (77.8%) 14 (73.7%) 12(63.2%)
Table 1. Focus Group Participant Characteristics by Site1
1. Two independent focus groups per site
Barriers
•Participants endorsed the importance of adhering to ART, despite differences in
agreement about how strictly to adhere.
•But, several factors impacting adherence—barriers—were identified both related to
medical and social factors.
1. Side Effects
• Many participants noted that the side-effects of ART regimens prevented
them from taking medications as prescribed.
• Nausea/vomiting was the most commonly cited side-effect of ART. Others
included diarrhea, dry mouth, nightmares, and weight gain.
2. Medication Fatigue
• Several participants were “tired” of taking medications.
• Most participants had been taking ART for more than a decade, and many
had been on more than one regimen.
• Characteristics of the medication, including size, taste, and the number of
pills contributed to medication fatigue.
3. Stigma and Disclosure Issues
• Many participants cited stigma around HIV status as a factor that inhibited
optimal adherence.
• Stigma included both social perceptions of PWLH as well as internalize
stigma related to being HIV-positive.
• Fear of disclosure of HIV status by medication taking was discussed as a
barrier to adherence.
4. Financial and Structural Barriers
• The cost associated with ART, especially for the non- and under-insured was
offered as a barrier.
• Additionally, participants discussed structural barriers such as transportation
to pharmacies and the limited accessibility of ART while incarcerated or
hospitalized.
5. The notion of “breaks”
• Several participants noted wanting to take breaks from ART regimens for
reasons above and beyond side-effects and medication fatigue.
• These factors generally included feeling healthier and wanting to experience
life without meds or wanting to party or travel.
Facilitators
• Despite the aforementioned barriers, many reported that they were able to
adhere to current ART regimens
• Factors that aided in adherence included:
• Creating a routine for taking medications
• Physical reminders such as pillboxes
• Emotional support from family and friends
• Feeling hopeful about the future & getting positive reports from clinicians.
The authors thank the focus group participants, as well as the
community partners who opened their doors to housed these sessions.
In addition, the authors thank Gratia Wright of First Research for
conducting and transcribing focus group sessions.
Funding for this project was provided by Merck and Co., Inc.
Additional support for The ESTEEM Project was provided by the
University of North Carolina (UNC) Center for AIDS Research (CFAR)
(P30 AI50410)
Tammy,a 52 year old female:
“I’m telling you it’s very
depressing,you got to take it every
day,every day,every day … and
sometimes you want to say,Lord,I
want to take a break.I’m tired of
taking pills.”
Richard,a 47 year old man:
“I was living with someone and I
didn‘t want them to know that I
was taking meds so I just stopped
at one point for about,whew,
maybe three or four months…”
• PLWH living in the US South describe a
number of barriers that continue to
impede adherence to modern day ART.
• Obstacles to ART adherence include
adverse effects that may impact quality of
life, and fears that medication can lead to
unwanted HIV status disclosure.
• Additionally, medication fatigue and
desires to lead a “normal” life can lead to
breaks in ART.
• Financial and structural barriers also
present challenges to ART adherence.
• Nevertheless, most PLWH reported
being able to maintain adherence to HIV
medications, citing facilitating factors
such as social support and hope for the
future.
• A validated instrument to predict ART
adherence should include the barriers
and facilitators that emerged from these
focus group discussions.
• Such an instrument can be useful to help
tailor counseling for optimizing
adherence.
Iris,a 23 year old transgendered woman:
“I like to go to the clubs.So at night
I can't take,I don’t really want to
take that pill because you know I
don’t want to go to the club and you
have to fall out…”
Project