Community Experiences and Perspectives on the Initiation of Lifelong ART in Pregnant Women (“Option B+"):

1. Community Experiences and Perspectives on the
Initiation of Lifelong ART in Pregnant Women (“Option B+"):
A Multi-Country Consultation to Inform the 2013 WHO Consolidated Guidelines on the Use of Antiretroviral Drugs for Treating and Preventing HIV-Infection
Amy Hsieh1, Sonia Haerizadeh2, Lillian Mworeko3, Joyce Kamwana3,4, Mala Ram5, Nick Keeble5, Christoforos Mallouris6,
Adam Garner1, April Baller7, Nathan Shaffer7
1-Global Network of People Living with HIV, 2-International Community of Women Living with HIV/AIDS (ICW), 3-ICW Eastern Africa, 4-Coalition of Women Living with HIV/AIDS,
5-International HIV/AIDS Alliance, 6-Social Justice 4 All, 7-World Health Organization
Methods
Between November and December 2012, a community consultation, on the perspectives of
"lifelong ART for pregnant women," was carried out using an online E-Survey, an E-Forum, and
focus group discussions.
Invitations to complete the E-Survey and subscribe to the E-Forum were disseminated via the
Global Network of People Living with HIV (GNP+) website, Facebook pages, and national and
regional networks of people living with HIV and other key populations. Information was
circulated through the International HIV/AIDS Alliance website and intranet, with a request to
share as widely as possible with non-governmental organizations (NGO), community-based
organizations (CBO), and community-level contacts. The WHO HIV/AIDS Department circulated
information through its networks. Messages were posted on a range of global, regional, and
national list-servers, used by communities of people living with HIV, NGOs and CBOs concerned
with HIV care, treatment, and support.
Malawi and Uganda were selected for the Focal Group Discussions as their HIV programmes are
currently implementing or considering implementation of Option B+ respectively.
The data collated was analyzed and the findings are presented here.
Results
E-Survey Participant Characteristics
There were 1088 e-survey respondents from low (21%), middle (59%), and high (20%)
income countries. Of the 791 who reported gender, 38% were female, 61% were male, and
1% were transgender. Median age range was 35-44 years old (n=280). Of the 864 who
reported their HIV status, 14% self-reported as being a woman living with HIV (n=118). Of
the 489 who identified with a key population, 45% were men who have sex with men
(n=220), 6% were people who use injecting drugs (n=28), 6% were sex workers (n=30),
16% were pregnant women (n=80), and 9% were refugees or migrants (n=42).
E-Survey Responses 1
Eighty-eight per cent of people living with HIV supported offering ART to pregnant women
regardless of their CD4 count.
Introduction
• Initiating lifelong antiretroviral therapy (ART) regardless of CD4 count during pregnancy
(“Option B+”) promises to deliver health benefits to mothers living with HIV as well as
prevention benefits to unborn children and sero-discordant partners. Successful implementation of
“Option B+” requires the consideration of the rights of women living with HIV (including their
right to refuse medical care), their experiences and preferences, as well as their partners’
perceptions. This consultation aimed to inform the 2013 WHO Consolidated Guidelines on the
Use of Antiretroviral Drugs for Treating and Preventing HIV Infection (WHO Consolidated
ARV Guidelines).
Conclusions
Values and preferences of the community contributed towards the development of the 2013 WHO
ARV Guidelines.
While communities support offering lifelong ART during pregnancy and breastfeeding (regardless
of CD4 count), on-going concerns exist which need addressing, relating to access, adherence, and
retention in care.
It is critical that clear information is provided prior to initiating lifelong treatment.
Affected communities need to be actively involved in decision-making, planning, and
implementation of “Option B+” to strengthen community ownership, acceptability and support.
Acknowledgments
We thank all participants of the consultation for their collaboration in data collection.
This project was conducted with support from the World Health Organization.
Presented at IAS 2013 – Kuala Lumpur, Malaysia
Limitations
Limitations of the E-Survey, E-Forum, and FGDs include the risk of bias in non-randomised samples.
In the E-Survey most questions did not require a response (with the exception of consent to participate,
gender, and country of residence) as a result sample sizes varied.
1 Since all survey questions did not require a response, the total number of respondents per question differs (with the exception of
consent to participate, age, and country) therefore, in this poster all data is presented with the total number of respondents per
question stated alongside.
Figure 5. Lifelong ART: HIV Programmatic and Individual Considerations
Community
Consultation
E-Survey*
• n=1088
Respondents
E-Forum*
• n=955
Subscribers
Focus Group
Discussions**
• n=88
Participants
* Available in Arabic,
Chinese, English, French,
Russian and Spanish
Figure 1. Consultation Methodology
**Conducted in English and
Chichewa or Luganda (when
needed)
FocusGroup
Discussions(n=88)
Malawi (n=43)
Muslim WLHIV
(n=9)
Rural WLHIV
(n=10)
Urban WLHIV
(n=11)
Rural and
professional
WLHIV (n=13)
Uganda (n=45)
Young WLHIV
(n=11)
Rural WLHIV
(n=12)
WLHIV in
Leadership (n=12)
Partners of WLHIV
(n=10)
Figure 2. Focus Group Methodology
Box 1. Key Recommendations
• Place women, their rights, and their choices, at the
centre of decisions concerning their and their
family’s health.
• Communities should have an active and on-going
role in monitoring and supporting the
implementation of “Option B+” as it:
• improves understanding and support in the
community;
• builds active partnership between community,
ministry of health, and implementing partners;
and
• provides on-going feedback to address issues
and strengthen programmes.
All respondents
PLHIV
Female PLHIV
Pregnant women 93%
90%
88%
94%
Proportion of Respondents (n=676)
Figure 3. Respondents who agree that Pregnant Women
should be offered ART regardless of their CD4 count
13%
18%
66%
3%
16%
16%
64%
4%
14%
43%
43%
0%
13%
26%
53%
9%
0% 25% 50% 75%
Option A
Option B
Option B+
None of the above
Proportion of Respondents
All respondents (n=439)
PLHIV
Female PLHIV
Pregnant women
Figure 4. Respondents who agree that Pregnant Women
should be offered “B+”
Very
Important
Somewhat
Important
Considerations to continue ART when
there is no longer a
risk of transmission to child (n=532)
Issues to address if Option B+ is
implemented in your context (n=631)
Adherence to ARVs
Availability of ARVs after giving birth
Quality of care
Availability of ARVs in antenatal clinics
Linkage between Sexual and Reproductive Health and HIV
services
Retention of mother in post-natal ART care
Stigma & discrimination from healthcare providers
Stigma & discrimination from family members
Stigma & discrimination in the community
• If access to uninterrupted first-line ART is guaranteed
• If it is easy / difficult to access ARVs
• Potential side effects of ARVs over time
• If access to uninterrupted second-line ART is guaranteed
• Level of CD4 count
• Overall health
• Planning / expecting to be pregnant again
ARV treatment Service capacity Social / legal
Individual
Benefits Concerns
• ↑ access to ART (irrespective of CD4 count)
• ↑ breastfeeding period option (↓ infant mortality
&↓ household expenditure)
• ↓ stigma towards mother and child (breastfeeding,
healthier appearance, child is negative)
• Possibility of having more children
• ↓ fear of resistance due to stopping and starting
ARVs
• Encourages disclosure, behavior change, testing
and ARV uptake
• Enables natural childbirth
• Initiation of ART with high CD4 (side
effects/toxicity, adherence, especially when young)
• Risk of coercion to begin ART
• May discourage disclosure (because individual
appears healthy); alternatively, may force
disclosure (due to presence of ARVs that are
brought home)
• May expose individual to violence
• Lack of information, support & counseling
• Incentive to get pregnant to access ARVs
• Concerns about resistance & need for 2nd and 3rd
line earlier
Child
Benefits Concerns
• Babies born HIV negative
• ↓ stigma to mother & child (breastfeeding,
healthier appearance, child is negative)
Partners
Benefits Concerns
• Partners are protected (TasP) • Risks around forced disclosure
• Concerns about equity of “Option B+” when
partners need and cannot access ARVS
• Male involvement interpreted as a requirement for
access to ARVs
• Risk of ↑ domestic violence
• May discourage condom use by male partners
• Lack of access to ARVs may ↓ male involvement
Programmatic/Health System
Benefits Concerns
• Simplifies efforts to prevent vertical transmission
of HIV
• ARV stock outs & weak health systems
(particularly in Uganda)
• WLHIV and communities are not being consulted
• Potential inequity if pregnant women are accessing
ARVs before other eligible PLHIV
• Cost
• Affordability
Before I start on B+, I should
be informed of all options and
all of the advantages of all of
the options so that I make
informed decisions based on the
benefits that are there.
- FG3#8
Involve young WLHIV because we can
make forums or workshops [especially
in their clinics]. Train women who
have not yet given birth on how this
can work for them… or train their
counselors so that by the time they get
pregnant they know what to expect.
- FG1#5
For B+, for someone whose CD4
counts are higher, my worry is that this
person’s toxicity, would it be too high?
- FG4#8
I’m telling people it is forever and
ever, and tomorrow they go there
and there is no drugs. What will
happen?
-FG3#7
I appreciate the services…
but it also comes with
guidelines that this person has to
follow. When I look at this… it is
more at the hospital setting, but what
happens at the community level?
Because it comes maybe with …
good feeding, certain conditions
…which these women will not be
able to afford...Because a young
mother will tell you, I cannot afford
breast milk because I can’t get food
but at the same time I cannot afford a
cup of milk every day.
Which other services are they
bringing alongside this
for it to be effective?
- FG3#1
For the full analysis of the focus group
discussion data, please visit the report
available at http://www.gnpplus.net/.