Reaching, Linking and Engaging Women in HIV Care

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Reaching, Linking and Engaging Women in HIV Care

• Victoria A Cargill, M.D., M.S.C.E.
• Office of AIDS Research
• NIH

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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.

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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.

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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.

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Now that we have treatment, why arent you in
care?

• Life is a sexually transmitted disease and the
  mortality rate is one hundred percent.--R. D.
  Laing

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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

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Teens and HIV infection

• Young people aged 1329 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

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Spectrum of HIV care Engagement
Fully in care
Gets some medical care
Enter care but lost
HIV Unaware
Aware but not in care
Occasion care
Gardener et al. CID 201152793.
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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 201152 793.
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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
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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

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HIV Infection Occurs in a Context
Grinding poverty
Stigma
Extremism
Discrimination
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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

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Whats 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
  Sep12(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. 20124(4)242-250)

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Whats the evidence? - 2

• Trauma It is estimated that between ¼ to more
  than ¾ of women living with HIV have experienced
  abuse.
• (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. 200216767.)

• Violence One case series reported 20.5 of
  women reported physical harm since their
  diagnosis much of it attributable to the HIV
  diagnosis.
• (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.)

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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 Ive never treated a white
  woman with HIV before.

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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.

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Why do you think she is afraid to confront her?

1. Fear
2. Stigma
3. Shame
4. All of the above

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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.

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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
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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 Im not coming
  back to that clinic. Its just for losers.

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What type of stigma is Stella experiencing now?

1. Self stigma
2. Felt stigma
3. Enacted stigma
4. A and B
5. None of the above

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Take Home Point
You dont 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
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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.

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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.

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Case 2. No one will miss me when I am gone

• What are your next steps (or some of them)?

• 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
  patients network.
• E. All of the above
• F. Other

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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.

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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 Im
  gone.

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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 wont 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

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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 wont 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

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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.

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Successfully engaging women in care
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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
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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 200519423-31
• The correlation between missed visits and
  increased patient death is high. Mugavero et al.
  CID 200948248-56
• 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

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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 Im 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 CES-D
  (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. 1997277(17)1357-1361)

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A word about adolescents
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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.

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Looking to the Future
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What is needed

• More evidence based interventions to improve
  linkage to care for women and children.
• Research targeted to identify the most cost
  effective strategies to improve adherence in
  women.

• There are essentially no robust clinical trials
  of adherence interventions in children. We need
  them.
• A frontal assault on stigma it is the engine
  that drives a lot of the challenges in HIV care.

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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.

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Take home points
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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.

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Whose life will you touch (and change) today?.

• A thousand words will not leave so deep an
  impression as one deed.
• --Henrik Ibsen