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Fertility Desires Among HIV-Infected Men and Women
in Los Angeles County: Client Needs and Provider Perspectives
Deborah Mindry •Glenn Wagner •Jordan Lake •
Amber Smith •Sebastian Linnemayr •
Molly Quinn •Risa Hoffman
Published online: 5 May 2012
Springer Science+Business Media, LLC 2012
Abstract Combination antiretroviral therapy for persons
living with HIV/AIDS (PLHA) has extended life expec-
tancy, and enabled PLHA to live productive lives that can
include having children. Despite calls to address child-
bearing for PLHA there has been limited attention to
developing safe conception programs. This research sought
to assess the childbearing desires of PLHA and the expe-
riences of health care providers serving this population.
Research entailed a brief cross-sectional client survey
given to HIV-infected men and women over age 18 at two
Los Angeles County clinics administered over an 8-week
period. Focus group discussions were conducted with
providers at each clinic site. Although 39 % of the 93
clients surveyed reported a desire to have children, two-
thirds of clients had not discussed their desires, or methods
of safe conception, with providers. Providers reported
challenges in providing safe conception services in
resource poor settings where clients cannot afford assisted
fertility services and in the absence of national, state, or
county guidelines for safe conception. They noted complex
and varied client circumstances and a critical need for
provider training in safe conception. Guidelines that focus
on safe conception and harm reduction strategies as well as
the legal ramifications of counseling on these practices are
needed. HIV providers need training and patients need
educational tools and workshops informing them of the
risks, challenges, and options available to them and their
partners to safely conceive and bear an HIV-negative child.
Keywords Safe conception HIV United States
Fertility intentions PLHA
Introduction
Combination antiretroviral therapy (ART) for persons liv-
ing with HIV/AIDS (PLHA) has significantly extended life
expectancy, and enabled men and women to live active and
productive lives that can include having and raising chil-
dren [1–4]. The availability of ART and the advances in
prevention-of-mother-to-child transmission (MTCT) have
resulted in more HIV-infected women electing to carry
pregnancies to term [1]. In the United States, the estimated
number of births from HIV-infected mothers in 2006 was
8,700, a 30 % increase over the number of estimated births
in 2000 [1]. Studies have reported between 26–40 % of
PLHA in the United States desire a child in the future
[4–7]. Despite the described needs of HIV-infected patients
and calls to address the fertility needs of PLHA in the
United States, little has been done in clinical settings to
address the risk of horizontal transmission in serodiscor-
dant couples desiring pregnancy, or to explore a couple- or
family-centered approach to harm reduction for people
with HIV who want to have children.
The bulk of research and clinical interventions surrounding
childbearing have focused on the fertility needs, desires, and
risks to HIV-infected women and the prevention of MTCT
D. Mindry (&)
Center for Culture and Health, Department of Psychiatry
and Behavioral Sciences, NPI-Semel Institute for Neuroscience,
University of California, 760 Westwood Plaza, P.O. Box 62,
Los Angeles, CA 90024-1759, USA
e-mail: dmindry@ucla.edu
G. Wagner A. Smith S. Linnemayr
RAND Institute, Santa Monica, CA, USA
J. Lake M. Quinn R. Hoffman
Division of Infectious Diseases and Center for Clinical AIDS
Research and Education, David Geffen School of Medicine
at University of California, Los Angeles, CA, USA
123
Matern Child Health J (2013) 17:593–600
DOI 10.1007/s10995-012-1035-6
[1–4]. However, the fertility desires and needs of HIV-infec-
ted men and/or serodiscordant couples, have received limited
attention [6–8]. Sauer et al. [6,7]atColumbiaUniversity
have most actively investigated the issues confronting men
living with HIV and the potential of assisted reproductive
services to meet their needs. It is increasingly apparent that
there is a need to expand reproductive health services for
HIV-infected individuals and/or serodiscordant couples, to
prevent HIV transmission to a seronegative partner as they
seek to conceive, ensuring appropriate HIV care to optimize
individual health and to prevent MTCT [9].
We report the results of a survey of HIV-infected men
and women in two Los Angeles County community clinics.
This study sought to assess the extent to which men and
women living with HIV desire to have children, whether
desire is associated with the HIV status of the partner, and
to assess the perceived availability of reproductive health
services to assist HIV clients in safe conception and
childbearing. We also report findings from focus groups
with HIV providers regarding perceived challenges to
offering support and services to clients who desire children
with a view to preventing horizontal transmission of HIV.
Methods
Participants and Setting
This study was conducted at the Valley Community Clinic
(VCC) and the To Help Everyone (THE) Clinic, in Los
Angeles County, California. Both clinics provide HIV care
to underserved populations; the majority of patients are
enrolled in either Ryan White or Medi-Cal insurance pro-
grams. The study consisted of (1) a brief cross-sectional
survey for adult HIV clients, and (2) focus group discus-
sions with HIV providers at each of the clinics. The
anonymous survey was distributed to all clients over age 18
who attended a weekly clinic visit over an 8-week period.
No compensation was provided for the survey, which
took about 5 min to complete. The client survey (see
‘‘ Appendix’’) consisted of 15 questions related to demo-
graphics (age, gender, presence of any children), relation-
ship status (including gender and HIV status of partner),
and fertility desires. Fertility desires were measured in
response to a two-part question: ‘‘Do you wish to have
a/another child?’’ With a follow up question to those who
responded ‘‘no’’: ‘‘Would your desire to have a/another
child change if you knew you could have a child with
limited risk of transmitting HIV to your partner and the
child?’’ to ensure that we would capture those individuals
who would consider having children if they could do so
safely. Respondents who answered ‘‘yes’’ to either question
one or two above were categorized as having ‘‘fertility
desires’’ in the binary variables used in the analysis; these
individuals were then asked questions with regard to
communication with providers about their fertility desires,
and knowledge of and access to reproductive health ser-
vices to promote safe childbearing (Table 1).
Providers (physicians, nurses, counselors, case manag-
ers) at both clinics were invited to participate in a site-
specific focus group. These discussions focused on pro-
viders’ perceptions and experiences regarding HIV clients’
reproductive health needs, their training experiences per-
taining to reproductive needs of PLHA, their knowledge of
available resources to meet client needs, and the challenges
they face in assisting PLHA to conceive and bear children.
The protocol was approved by the RAND Institutional
Review Board (IRB), which was deferred to by the UCLA
IRB as indicated by a joint agreement between the two
IRBs for collaborative studies.
Data Analysis
Descriptive statistics were used to examine frequency
distributions of key variables. Independent ttests (two-
tailed) were used to examine continuous variables in rela-
tionship to the binary indicator of fertility desire, while v
2
tests were used for categorical variables. Logistic regres-
sion analysis was performed to assess multivariate corre-
lates of having fertility desires. Independent variables
inserted into the model included age, gender, relationships
status and whether or not the patient had any children. The
qualitative data was analyzed using a grounded theory
approach which codes data according to common themes
and key concepts. The themes that emerged in the inter-
views were used to index the data using topical codes, also
called descriptive codes, in order to identify critical issues
related to the delivery of assisted reproductive services to
PLHIV.
Results
Patient Survey Results
The survey results was completed by 93 clients (Table 1).
Data on the number of patients approached to participate
were not collected, but site coordinators estimate that
approximately 65 % of patients at VCC completed the
brief survey while at THE approximately 75 % of clients
completed the survey. Two-thirds (68 %; n=63) of the
sample was male, and the mean age was 42 years
(SD =10.5; range: 23–72). Forty-six percent of respon-
dents (n=43) reported being in a relationship, of whom
38 % (14/37; 6 had missing data) had a same sex partner
and 63 % (26/41; 2 had missing data) had a partner whose
594 Matern Child Health J (2013) 17:593–600
123
HIV status was negative (n=20) or unknown (n=6).
The sample is generally reflective of the client populations
at each site.
Twenty-six percent (n=23) of clients responded ‘‘yes’’
to the question, ‘‘Do you wish to have a/another child?’’
But in a follow up question to those who responded ‘‘no’’
to this question, another 13 % (n=12) affirmatively
responded to the question, ‘‘Would your desire to have
a/another child change if you knew you could have a child
with limited risk of transmitting HIV to your partner and
the child?’’ Hence, a total of 39 % (n=35) of participants
expressed having fertility desires; however, only three
indicated they were actively trying to have a child. Among
those with fertility desires, 49 % (17/35) did not have any
children, compared to 58 % (33/57) of the clients who did
not have fertility desires (p=.38; 1 case had missing
data).
Men (39 %) were as likely as women (38 %) to express
a desire to have children (p=.86). Clients who wanted
a/another child were younger (mean age =35.5 years)
than clients who did not (mean age =46.1; p=.000);
among those aged 20–29, 79 % indicated a desire to have
a/another child, compared to 48 % in the 30–39 age group,
30 % in those aged 40–49, and only 11 % among those 50
or older (p=.000). Just over half of participants in a
relationship (54 %; 23/43) reported a desire to have
a/another child, compared to only 25 % (12/36) of those
who were single (p=.005). Among the clients in a rela-
tionship, the association between fertility desires and
partner HIV status was not statistically significant
(p=.50), although a slightly lower percentage of clients
with an HIV-positive partner wanted to have a/another
child (47 %; 7/15) compared to 58 % (15/26) to those with
an HIV-negative or unknown status partner. In logistic
regression analysis, age was the only significant indepen-
dent correlate of fertility desires (OR =0.87; 95 % CI
0.81–0.93; p=.000), while being a parent (OR =2.76;
95 % CI 0.82–9.28; p=.10) and relationship status
(OR =2.41; 95 % CI 0.81–7.24; p=.12) were margin-
ally related; gender had no relationship to fertility desires
(OR =0.95; 95 % CI 0.33–2.69; p=.92).
The subgroup of participants who reported a desire to
have a/another child was asked about the support and
services available to them to have children safely. When
asked whether there are methods available to them to
ensure that they could conceive a child with limited risk of
transmitting HIV to their partner, only 25 % (n=8) said
‘yes’, whereas 6 % (n=2) said ‘no’ and 69 % (n=22)
said they ‘did not know’. Additionally, 43 % (n=13) said
that ‘yes’ their doctor or nurse was able to provide them
with the services and assistance they need to safely have a
child, while 7 % (n=2) responded ‘no’ and 50 %
(n=15) indicated they ‘did not know’ whether their
providers could offer these services. Over two-thirds
(70 %, n=23) said that they had not talked to their pro-
vider about how to have a child safely; however, 64 %
(n=21) said that they would like to talk to their provider
about their desire to have a child, and 74 % (n=23) felt
that their provider would support their desire to have a
child.
Table 1 Characteristics of HIV-positive clients by desire to have a/another child
Characteristics Total (N=93) Desire a/nother child
(N=35)
Do not desire a/nother child
(N=58)
Pvalue
Mean age
a
42.2 (SD: 10.5; range: 23–72) 35.5 (SD: 8.5) 46.1 (SD: 9.5) .000
20–29 years 14 11 (79 %) 3 (21 %) .000
30–39 years 23 11 (48 %) 12 (52 %)
40–49 years 31 9 (29 %) 22 (71 %)
50?years 22 2 (9 %) 20 (91 %)
Male
b
64/90 (71 %) 24/34 (71 %) 40/56 (71 %) .932
In relationship
c
43/91 (47 %) 23/35 (66 %) 20/56 (36 %) .005
Same sex relationship
d
14/37 (38 %) 5/20 (25 %) 9/17 (53 %) .081
Sero-negative or status unknown
partner
e
26/41 (63 %) 15/22 (68 %) 11/19 (58 %) .495
Do not have child/ren
f
50/92 (54 %) 17/35 (49 %) 33/57 (58 %) .383
a
Three respondents had missing data regarding age
b
Three respondents had missing data regarding sex
c
Two respondents had missing data regarding relationship status
d
Six respondents had missing data regarding sex of partner
e
Two respondents had missing data regarding partner HIV status
f
One respondent had missing data regarding status of having children
Matern Child Health J (2013) 17:593–600 595
123
Provider Focus Groups
Five providers participated in the focus group at THE, and
three participated at VCC. Each group was comprised of at
least one physician, one case manager, and one nurse or an
additional case manager. The themes that emerged from
the provider focus groups discussions were: provider
knowledge related to HIV and reproductive health, client
needs, and resources; provider attitudes related to HIV
clients’ desires to have children and experiences of non-
HIV provider attitudes toward HIV-infected clients; pro-
vider needs related to availability of services, training, and
knowledge regarding reproduction in the context of HIV.
In the focus group discussions, providers noted that in
the early phase of learning about their HIV status clients
are assimilating the news and are not usually asking
questions about having children. Providers believed it was
more effective to discuss future childbearing with clients
once they have adjusted to their diagnosis. They noted that
during initial intake and counseling, it can be useful to
mention options for future childbearing to patients as a
topic for discussion when ready. They noted that it was
necessary for providers to raise these issues since many
clients assume that they cannot or should not have children
if they are HIV-infected.
Providers noted a great deal of complexity in the cir-
cumstances of clients expressing a desire for children. The
majority of clients at both clinics are men. Some of these
men are in heterosexual relationships. Yet others are con-
currently in sexual relationships with both women and
men. A final category of male clients are those in exclu-
sively same sex relationships. Providers noted that cir-
cumstances and needs are extremely varied given that men
in all 3 categories may express a desire for a biological
child. One provider reported that,
One of the clients today said, ‘‘Well, I’m gay but my
girlfriend, one of my closest friends, wants me to be
[the sperm donor for her]—she’s gay too, and she
wants to have a baby. So, she wants me to be the
father. But she doesn’t know I’m HIV positive. So,
can you help me try to figure that out?’’ (August 4,
2010).
Some heterosexual female clients also express a desire to
have a child but providers noted that most women in their
care already had children and in general clients (both male
and female) who already have children are less likely to
express a desire to have another child.
Providers noted when clients raise the issue of having
children one of their primary concerns is to avoid HIV
transmission to the child. Additionally, providers noted that
‘‘They [clients] also don’t want to ask and risk being told
no [they cannot have children]’’ (June 10, 2010). They
noted that it is extremely challenging to meet the needs of
couples when the HIV-infected client has not disclosed
their status to their partner. One provider noted,
I’ve had a couple of clients that are interested in
having kids but they want to know—and their part-
ner, or soon-to-be partner is negative—but they want
to know, how can they have kids without disclosure.
Like, do they have to disclose? That’s a big issue.
(August 4, 2010).
Providers expressed discomfort in working with male
clients who desired a child but were either unwilling to
disclose their status to their partner (sometimes out of
concern not only of HIV stigma but also in instances where
men were bisexual, out of fear of disclosure of having
concurrent male sexual partners) or had partners who were
unwilling to test or to come in for counseling. There were
two reported instances of male clients seeking provider
assistance to safely conceive a child to avoid infection of a
negative female partner and to the child. In these instances
the provider was able to work successfully with the
individual and when necessary with the couple to ensure a
safe conception and birth of a child that was uninfected.
Providers at both clinics noted that working with clients
in resource poor settings was additionally challenging
given the limited economic circumstances of the clients
and limitations in public medical assistance programs to
cover costs associated with assisted fertility services (such
as sperm washing and intrauterine insemination). As one
provider stated:
There is a problem with trying to provide appropriate
care. Fertility specialists are a cash business. These
services are not available for free. Our clients don’t
pay anything when they come here. They have to be
prepared to pay for these services, and they cannot
usually afford them. There is often a longing for
children but not an active plan. However, I have a
client now who wants to have a child. He has a plan
and he is saving up to pay for the sperm washing and
fertility services. Every time he comes in we check
how he is doing with his plan. (June 10, 2010)
Some providers had found ways to refer clients to less
expensive fertility services, but clients still had to pay for
some of these services and costs are often unpredictable.
One provider reported that ‘‘we referred a patient and it
was prohibitively expensive. The discounted price was,
like, $4,000 and he came back and said, ‘‘I can’t afford
that. What do I do next?’’’’(August 4, 2010). Providers felt
the challenges of working in resource-poor settings are not
receiving adequate attention. One provider said,
596 Matern Child Health J (2013) 17:593–600
123
And it feels, from a provider’s standpoint, sort of
suboptimal. And I think what’s interesting about our
setting is that we’re resource-rich, really, as a coun-
try, but we are resource-poor and most HIV care is
resource-poor, you know, because that’s who’s HIV
infected. (August 4, 2010).
Providers also noted a great deal of misinformation among
clients. They reported, for example, instances in which
women who wanted to conceive a child thought that they
simply needed to seek out an HIV-negative partner in order
to prevent HIV transmission to the child. In another
instance a provider reported on a heterosexual male client’s
lack of information regarding methods for prevention of
HIV transmission:
We had one client who had a child with a previous
partner. The child was born HIV negative. He then
assumed everything would be fine when he was with
his new partner. He was not aware of the process that
his first partner went through to ensure that their child
was born negative. Because he did not know the
procedure they did not get counseling and his second
child with his new partner was born HIV positive.
(June 10, 2010).
Another problem providers confront is that female clients
often approach them late in the process of fertility planning:
They are not aware of treatment to avoid transmission
of HIV to their child. They usually come to us when
they are already pregnant. They are diagnosed for
HIV late (sometimes tested because of the preg-
nancy), and then we have to deal with the problems.
(June 4, 2010).
In addition, providers noted two issues in their own training
and practice that impacted their ability to be proactive with
clients’ childbearing needs: (1) provider training in repro-
ductive health services for PLHA was absent or sparse at
best; and (2) provider decision making is not supported by
county, state or national guidelines for PLHA who desire
genetic children. Providers discussed the gaps in their
training. One provider said:
I think the problem is in the medical community. I
don’t think there is a formal training for this [helping
PLHA conceive safely]. I’ve never seen a workshop
about it; I’ve never seen a specific kind of educational
section about it. I think you’d have to—there’s
training in, obviously, reproductive endocrinology
and in vitro fertilization in that department with the
Obstetrics and Gynecology area. And then, obvi-
ously, there’s HIV [training]. But I don’t think any-
one has ever brought those two together. (August 4,
2010).
Providers noted that obstetrics and gynecology providers
do not generally have significant training in HIV, and may
be reluctant to provide even basic services to PLHA. One
provider related an instance in which an obstetrician who
discovered through testing that his pregnant client was
HIV-positive called in a security guard while he delivered
the news to her. The client reportedly left and disappeared
from care: ‘‘So, we didn’t know where this woman was,
pregnant with twins and HIV positive, 20 weeks.’’ (August
4, 2010).
Providers were also reluctant to counsel clients given a
general lack of confidence about risks of HIV transmission
while trying to conceive. A provider noted,
I don’t know enough about it to encourage it
[unprotected sex to conceive]. HIV response in dif-
ferent body compartments is different. If viral load is
low in blood that does not mean it is low in semen or
in other bodily fluids. Also every patient will be
different. You really need a reproductive endocri-
nologist to help make recommendations. You need
information that is matter of fact. (June 10, 2010).
The provider went on to say,
…even if it is a 1 % risk, I can’t recommend they
take that risk. I really don’t know how you would
predict risk. It is stressful to me to tell them, ‘‘go
ahead you have a low risk [of transmitting HIV to
your partner].’’ (June 10, 2010).
Providers were concerned about the ethical challenges of
counseling clients in the absence of clear guidelines
developed from evidence-based research.
You always individualize your treatment for each
patient, but you always want evidence to back it up.
(August 4, 2010).
Providers emphasized the need for training and guidelines
for providers as well as educational information for clients.
Discussion
There is an increasing need to address the fertility desires
and intentions of PLHA. Although 39 % of clients in our
study reported a desire to have children most were unaware
of available methods to increase the safety of conception,
and most had not discussed such methods or their desires
for children with providers. Burr et al. [3] notes there is a
desperate need for preconception counseling for HIV-
infected men and women and for national guidelines on
assisted reproductive technologies for HIV-infected sero-
discordant and seroconcordant couples seeking to conceive
children. Our data support this conclusion, particularly the
Matern Child Health J (2013) 17:593–600 597
123
need for specific information and/or guidelines to support
providers in steering patients through the process, to reduce
harm during peri-conception, optimize individual health,
and prevent vertical transmission.
While a variety of organizations provide guidance on
addressing general approaches to pre-conception coun-
seling for couples where one or both partners have HIV
infection (American Congress of Obstetricians and
Gynecologists, the AIDS Education and Training Centers
National Resource Center, and the USPHS Perinatal
Guidelines 2010 [15], among others), there is a clear need
for much more specific and detailed recommendations for
use by clinicians working with HIV-infected men and
women of reproductive age, and a need for materials
geared towards clinicians with primary care backgrounds
(as compared to obstetrics and gynecology or reproduc-
tive endocrinology), A broad working document from the
CDC or other national government agency would be
welcome; however, any document will likely have to be
accompanied by state-level guidance addressing local
regulations that may dictate interventions. Recommenda-
tions should be provided with consideration of the costs
associated with assisted reproductive services to PLHA in
the US, where the majority of HIV care occurs in
resource-poor settings. Guidelines should include infor-
mation on inexpensive harm reduction strategies such as
timed unprotected intercourse during ovulation, sperm
washing (for positive male/negative female) and self-
insemination (for positive female/negative male). Harm
reduction strategies can also include identifying and
treating sexually transmitted infections including genital
herpes simplex virus, and circumcision of an HIV-nega-
tive male partner.
Like Sauer [7], we found that provider concerns
include issues related to the potential liability associated
with discussing fertility options for PLHA, particularly in
the absence of national guidelines [9]. Therefore, as
consideration is given to the development of guidelines,
perspectives of lawyers well-versed in fertility rights will
be needed, to clarify the potential liability associated with
reproductive health counseling for HIV-infected clients.
The South African HIV Clinicians Society recently pub-
lished a ‘Guideline on Safer Conception in Fertile HIV-
Infected Individuals and Couples’ [10], which serves as a
good model for the type of guidance needed in the
United States. Our group is working with other collabo-
rators on a similar document for use in the greater Los
Angeles area.
The NIAID-funded HPTN 052 study showed that ART
use in serodiscordant couples was associated with a 96 %
efficacy in reducing transmission of HIV to an uninfected
partner [11]. This data, although preliminary, suggests a
promising harm reduction strategy towards meeting the
fertility needs of serodiscordant couples. However, to
maximize efficacy of ART as prevention of transmission
from an HIV-positive individual to a negative partner,
individuals must engage in care and adhere daily to anti-
retroviral medication regimens, a not insubstantial chal-
lenge for many patients. Overall, the complement of
fertility services need to be delivered within a larger
framework of HIV care including identifying HIV-infected
men and women, facilitating entry to care, and retaining
people in care long-term.
While ART for prevention of transmission is a promis-
ing strategy for use by HIV-infected individuals, the use of
pre-exposure prophylaxis (PrEP) is an emerging strategy
for use by the HIV-uninfected partner to prevent HIV
acquisition. PrEP has proven a successful strategy in men
who have sex with men with efficacy associated strongly
with level of medication adherence [12]. A study of PrEP
in women was recently halted for futility, with further
analysis showing that less than half of women in the study
were adherent to medications, suggesting that adherence
may be the major barrier to the success of this strategy for
both men and women [13]. Two other studies, Partners
PrEP and TDF2, have also shown efficacy in African het-
erosexual populations, yet optimal use and adherence
issues of PrEP for conception remains unclear [14]. Despite
a lack of data, clients may turn to the use of unproven
strategies for fertility assistance due to lack of awareness or
poor understanding of the available options and evidence
base. There is an urgent need for research on the attitudes
and knowledge of safe conception and PrEP among HIV-
negative partners of HIV-infected persons, especially in
HIV-negative female partners of HIV-infected men.
This study is just a beginning in addressing the needs of
providers and their HIV-infected clients. Our study was
limited to gathering brief survey data from clients as well
as focus groups with a small number of providers. We did
attempt to conduct in-depth interviews and focus groups
with clients, but we encountered numerous challenges
including clients’ fears of their HIV status being revealed
in the context of focus groups, and reluctance to take time
away from work to participate. Examination of these issues
with larger samples of clients and providers, from diverse
settings and including the partners, are needed to further
our understanding of the reproductive health needs of
PLHA, and the needs of HIV providers who are in a
position to best address these needs.
Acknowledgments We would like to thank clinic leadership as well
as the staff at the Valley Community Clinic (VCC) and the To Help
Everyone (THE) Clinic for their support and assistance with the
study. We also gratefully acknowledge the patients who participated
in the study.
598 Matern Child Health J (2013) 17:593–600
123
Appendix: Survey on Fertility Desires
and Reproductive Health Services
Thank you for completing the survey. If you have had a
child since testing HIV1, or if you are currently trying
to have a child or have desires to have a child, and you
would be willing to participate in a focus group with
others HIV clients like yourself, please inform the clinic
staff member who gave you this survey or your pro-
vider of your interest. Please note that your participa-
tion in this focus group is completely voluntary.
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