“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, Abigail T. Panter1, Eric M. Maiese2 and David A. 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)

Native Amer, 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…”

Pro

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