Transcript Powerpoint

Reaching, Linking and
Engaging Women in HIV
Care
Victoria A Cargill, M.D., M.S.C.E.
Office of AIDS Research
NIH
Disclosures of Financial Relationships
This speaker has no significant financial
relationships with commercial entities to
disclose.
This speaker will not discuss off-label use
or investigational product during the
program.
This slide set has been peer-reviewed to ensure that there are no
conflicts of interest represented in the presentation.
Disclosures
• Dr. Cargill has no financial disclosures to
make and is not referencing any off label
use of medications.
• During the presentation opinions may be
expressed that are those of the
presenter and do not reflect the position
or policy of the U.S. Department of
Health and Human Services nor the
National Institutes of Health.
Presentation Goals
 To discuss the barriers to reaching and
engaging women and children in HIV
treatment.
 To identify the concerns that impact treatment
linkage and engagement.
 To highlight successful interventions to engage
women in HIV care.
 To review the types of stigma and its impact on
women.
 To highlight important examples of these
issues with real world cases.
Now that we have treatment,
why aren’t you in care?
Life is a sexually transmitted disease
and the mortality rate is one hundred
percent.
--R. D. Laing
Women and HIV infection
• Women with HIV infection will be with us
for a while.
 At some point in her lifetime, 1 in 139
women will be diagnosed with HIV
infection.
 1 in 32 black women and 1 in 106
Hispanic/Latina women will be
diagnosed with HIV.
Source: http://www.cdc.gov/hiv/topics/women/index.htm
Teens and HIV infection
• Young people aged 13–29 accounted for
39% of all new HIV infections in 2009.
• Young MSM accounted for 65% of the
new infections among those age 13 – 29.
 Those aged 20 – 24 had the highest
number and rate of HIV diagnoses in
2009.
 Age of sexual debut remains around 15
with 46% of high school youth reporting
sexual intercourse.
Source: http://www.cdc.gov/hiv/youth/index.htm
Spectrum of HIV care Engagement
HIV
Unaware
Aware but
not in care
Gardener et al. CID 2011;52:793.
Gets
some
medical
care
Enter
care
but
lost
Occasion
care
Fully
in
care
How does this translate?
 15% of those with HIV infection do not
know it.
 45 – 55% of HIV infected individuals fail
to receive HIV care in any one year.
 83% of NYC patients were in care within
4 YEARS.
 About 80% of US HIV infected should be
receiving antiretrovirals, yet only 20% do
so.
 4 – 6% of individuals receiving ART stop
taking it every year.
Gardner et al. CID 2011:52; 793.
Cascade of care updated - 2009
• In 2009 – estimated 1,148, 200 HIV
infected persons living in the U.S.
• Estimated 207,600 were unaware
(18.1%).
• Overall 37% were retained in care*.
• 25% of all US HIV infected individuals
achieved viral suppression.
• HIGHEST rates of retention and
suppression were in female IDUs and
heterosexuals.
Hall I, Frazier E, Rhodes P et al. XIX International AIDS Conference.
Abstract FRLBX05
Barriers to reaching and engaging women
in HIV care
Being a woman is a terribly
difficult task, since it consists
principally in dealing with men.
--Joseph Conrad
HIV Infection Occurs in a Context
Grinding poverty
Stigma
Extremism
Discrimination
Barriers to Care Engagement
•
•
•
•
•
•
•
•
•
Poverty
Limited care options in a geographic area
Stigma
Fear
Substance Abuse
Violence
Ignorance
Self hatred – internalized racism, homophobia
Prior trauma, including sexual, physical and
psychological abuse
What’s the evidence?
• Poverty – HIV+ patients
more likely to seek preventive
dental care if financial
barriers are removed.
• Quality of care – when
clients are satisfied with their
care they are more likely to
return and engage.
(J Evid Based Dent Pract. 2012
Sep;12(3):169-70.)
• Fear – several studies of
PCP revealed that testing
was not done out of fear of
having to respond to a
positive test result.
• Ignorance – Some PCP
feared testing for HIV would
undermine the patient
relationship.
• Denial – providers routinely
did not test teens or the
elderly (over 70) making
assumptions about risk based
upon age and marital status
(J Clin Med Res. 2012;4(4):242-250)
.
What’s the evidence? - 2
• Trauma: It is estimated that
• Violence – One case series
between ¼ to more than ¾ of
women living with HIV have
experienced abuse.
reported 20.5% of women
reported physical harm since
their diagnosis much of it
attributable to the HIV
diagnosis.
(Roberts and Mann. AIDS Care. 2002;
12(4):377.)
• Depression: depression is
a major predictor of dropping
out of care as well as
nonadherence. Depression
treatment makes a significant
difference.
(Yun et al. JAIDS. 2005; 38: 432.)
• Substance abuse: Active
substance abuse has been
consistently associated with
poor adherence and
outcomes.
(Lucas et al. AIDS. 2002;16:767.)
(Aziz and Smith. CID. 2011; 52 (suppl
2): S231-S237.)
• Past Experience – many
women with HIV infection
have long histories of poor
treatment and discrimination
and fear more of the same
and becoming even more
marginalized.
(Aziz and Smith. CID. 2011; 52 (suppl
2): S231-S237.)
Case 1. I never expected YOU to have HIV
• Stella is 38 y o white female transcriptionist at a large,
famous Midwestern tertiary care hospital.
• Has one 10 y o son from a prior marriage – states her
husband died from hepatitis due to IDU in New Jersey.
• Now in a 4 year relationship with a truck driver who
has a ‘quick’ temper.
• Pregnant with a second child she asks her ob-gyn for
an HIV test after reading an article in the waiting room.
• He initially declines because of her race but she
persists. He tests her and calls her at work with the
results saying: “I’ve never treated a white woman with
HIV before.”
Case 1. I never expected YOU to have HIV
• She presents for care and is hysterical in the waiting
room.
• In the exam room she has a number of questions from
testing her son to telling her partner with the “quick
temper”.
• She says she now believes her husband died of
something other than hepatitis. She wants to confront
her former mother-in-law but is afraid.
Why do you think she is afraid to confront her?
A.
B.
C.
D.
100%
Fear
Stigma
Shame
All of the above
0%
A.
0%
B.
0%
C.
D.
Types of Stigma
• Self stigma - people living with HIV impose feelings of
difference, inferiority and unworthiness on themselves
– Often with first diagnosis, worse in setting of little support
• Felt stigma - perceptions or feelings towards a group,
such as people living with HIV, who are different in
some respect
– Blatant or subtle it is always value laden, implying the other is
“less than”. Can be associated with overt abuse
• Enacted stigma - actions fueled by stigma and which
are commonly referred to as discrimination
– Physical and/or social isolation, being kicked out of a home or
family, source of gossip.
• In the end the type is irrelevant, the pain is the
same.
The legacy of stigma
"Stigma remains the single most important barrier to public action. It is a
main reason why too many people are afraid to see a doctor to determine
whether they have the disease, or to seek treatment if so. It helps make
AIDS the silent killer, because people fear the social disgrace of speaking
about it, or taking easily available precautions. Stigma is a chief reason
why the AIDS epidemic continues to devastate societies around the
world."1
UN Secretary General Ban Ki Moon
Washington Times, August 6, 2008
Case 1. Stella learns more
• After learning that her son is also HIV + she contacts
her former mother in law
• She learns her husband died of AIDS and a hepatoma
• She calls the provider to say: “ I’m not coming back to
that clinic. It’s just for losers.”
What type of stigma is Stella experiencing now?
A.
B.
C.
D.
E.
77%
Self stigma
Felt stigma
Enacted stigma
A and B
None of the above
11%
A.
6%
4%
2%
B.
C.
D.
E.
Take Home Point
“You don’t have to hit me to wound me – your
look, your manner, the way you speak to me – it
already tells me if you have judged me or not.”
-- Cassie – 19 years old PLWH for 6 years
Case 2. No one will miss me when I am gone
• Ayesha is 27 y o black female nursing assistant,
tested HIV + in 1996.
• Been in and out of care since then. Lost custody of
her children.
• At some point diagnosed with schizoaffective disorder
and placed on medication. Never returned for follow
up mental health care.
• Comes to clinic with a cough, short of breath, fever
104, weight loss of 65 pounds. She is so weak the
provider carries her to a chair.
• She refuses hospital admission, relenting only when
her mother appears to insist she go.
Case 2. No one will miss me when I am gone
• The provider calls the ER to expect the patient.
• Four hours later the provider learns the patient had
pneumonia and left AMA with antibiotics.
• You call the patient and ask why she left the ER and
she is noncommittal.
Case 2. No one will miss me when I am gone
• What are your next steps (or some of them)?
90%
A. Ask the patient to come to
your clinic ASAP.
B. Also attempt to contact Mom.
C. Try to set up social work and
mental health support for the
patient.
D. Try to identify other supports in
the patient’s network.
E. All of the above
F. Other
5%
0%
0%
1
2
5%
0%
3
4
5
6
Case 2. No one will miss me when I am gone
• All of the above
– This patient clearly needs prompt medical attention. The
diagnosis of pneumonia raises the concern of rapid
deterioration.
– Additional insight and support will be needed to help her. She
is clearly aware (as a nursing assistant) of the risk to her
health of leaving the hospital so other forces are at work.
– Mom and others may provide additional information that can
help engage the patient in care.
– Although the patient chose to leave care, the practice can
continue to offer her the option of returning.
– Ideally a multidisciplinary team is the best approach to
identifying her range of needs.
Case 2. The Plot Thickens
• She returns to the clinic and is clearly worse.
• She is readmitted to the hospital and diagnosed with
PCP.
• While in the hospital you learn that her first child died
of SIDs, and one of the twins she bore in a second
pregnancy died of sickle cell anemia.
• Her loss of custody came after a series of drug binges
and charges after the death of the second child.
• She is caught ‘tonguing’ medicine, and when
confronted says: “No one will miss me when I’m gone.”
Case 2. The Plot Thickens
• What are your next steps (or some of them)?
A. Contact the care team about an urgent
psychiatry/pastoral care referral.
B. Talk with the patient more about why she thinks
she won’t be missed.
C. Explore other supports
D. Talk with her more about what HIV infection has
meant to her
E. All of the above
F. Other
Case 2. The Plot Thickens
• What are your next steps (or some of them)?
A. Contact the care team about
an urgent
psychiatry/pastoral
care referral.
B. Talk with the patient more
about why she thinks she won’t
be missed.
C. Explore other supports
D. Talk with her more about what
HIV infection has meant to her
E. All of the above
F. Other
88%
13%
0%
1
2
0%
0%
3
4
0%
5
6
Answer: All of the above
• This is not a fixed answer but these cases require a
great deal of labor intensive intervention:
– The patient has a strong faith base so that psychiatry alone
may not be helpful, although her ideation and probable
depression need to be addressed.
– Recall that for women care engagement is closely tied to a
relationship with a provider; allowing her time to tell you how
she feels is key.
– This is going to be a long and rough road. It will require a
number of people. When the family meeting was called 47
people showed up and each was asked to do something
different to help.
– Learning what HIV infection means to her will be essential.
This latest disruptive behavior came after she disclosed her
status as I had suggested and she was rejected.
Successfully engaging women
in care
Engaging women in care
• Establishing an environment that is woman
centered and responsive (flexible hours, child
care on site, multidisciplinary team).
• Use of peer educators and peer navigators as
paid and valuable members of the team.
• Coordination between medical and social
service support teams including assistance
with health system navigation.1
1. Enhancing Access to Quality HIV Care for Women of
Color (2007 - 2008)
- HRSA and John Snow Institute
Facilitating linkage to care
• Referring patients into care
– Active linkage into care; specific name, dates and times; active case
management referrals may also help.
Gardner et al. AIDS 2005;19:423-31
– The correlation between missed visits and increased patient death is
high. Mugavero et al. CID 2009;48:248-56
• Increased HIV testing
– The CDC recommends opt-out testing for those age 13 – 64. Testing
should be done in a routine visit unless the patient specifically
refuses testing.
• Systematic follow up of missed visits
– Several studies and a recent abstract presented at the AIDS 2012
meeting demonstrate the importance of following up missed visits.
Over 1/3 who truly had dropped out returned to care on a follow up
contact. Biggest reason for failing to return – the patient felt
well.
Hall I, Frazier E, Rhodes P et al. XIX International AIDS Conference.
Abstract FRLBX05
Facilitating linkage to care - 2
• Culturally competent and female friendly care
– Many women with HIV infection have already experienced
racism,discrimination and more expecting it to get worse with HIV
care. Having culturally competent care is essential.
Dionne-Odom et al. 2009. HIV/AIDS In U.S. Communities of Color.
• Ongoing screening for intimate partner or other violence/abuse,
mental health and substance use. This is not a “one and I’m
done”
– Mental health screening has to be done utilizing tools that are
culturally appropriate. Beck Depression Index may not be
appropriate for all non-Caucasian populations. For example the CESD (Center for Epidemiologic Studies) Depression scale has been
evaluated in Latinos. (Posner et al. Ethnicity and Health 2001.)
– Screening for violence needs to be on an ongoing basis as the
patient circumstances can change. Three brief screening questions
have been shown to be good at picking up IPV. (Feldhaus et al.
JAMA. 1997;277(17):1357-1361)
A word about adolescents
Challenges unique to adolescents
• Access to testing and care – depending upon where they
live this can raise the specter of adult notification or being
informed of their behavior. Young MSM, especially black MSM
have high rates of infection and low rates of awareness.
• Developmental stage - at this life stage feelings of being
immortal and invulnerable can interfere with the ability to fully
grasp the seriousness of the infection. Similarly, feelings of
shame and fear can lead to hiding infection – including from
partners – i.e. nondisclosure.
• Transitions – one of the most difficult transitions is from
pediatric to adult care and where many adolescents are lost in
HIV care. It is essential to have a planned transition with checks
to ensure that the transition is moving smoothly. As the definition
of adolescence has expanded to include up to age 25, many
teens can remain in care with their original provider if the
practice allows.
Looking to the Future
What is needed
• More evidence
• There are essentially
based interventions
no robust clinical
to improve linkage to
trials of adherence
care for women and
interventions in
children.
children. We need
them.
• Research targeted to
identify the most cost • A frontal assault on
effective strategies to
stigma – it is the
improve adherence
engine that drives a
in women.
lot of the challenges
in HIV care.
What is needed - 2
• Culturally competent
and directed care as
a standard across
the U.S.
• Evidence based
strategies for
minimizing self
hatred and
internalized
homophobia and
racism.
• A larger cohort of
HIV providers –
there will be a
shortage of HIV
providers by the 4th
decade of AIDS.
• A cure.
Take home points
Summary
• Multiple factors impact care linkage and engagement
for women and children.
• A number of social determinants such as poverty,
abuse and violence have great impact upon HIV risk,
HIV care seeking and remaining in care.
• There is no magic bullet for engaging clients in care. It
has to be tailored to the patient, often requiring a
multidisciplinary approach.
• This is a labor intensive and at times emotionally
wearing process.
• Adolescents are at risk for dropping out of care due to
many external factors, as well as the developmental
stage of being “immortal”.
Whose life will you touch (and change) today?.
A thousand words will not leave so
deep an impression as one deed.
--Henrik Ibsen