Lost Opportunities: Late HIV Diagnosis, Delayed Treatment and Unmet Need for Care

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Lost Opportunities Late HIV Diagnosis, Delayed
Treatment and Unmet Need for Care

• Ann S. Robbins, PhD.
• Manager, HIV/STD Comprehensive Services Branch

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Overview

• The Care Continuum
• Late Diagnosis
• Delayed Treatment
• Unmet Need for Care
• Conclusions Recommendations

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Entry and Maintenance in Care
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Late Diagnosis

• Definition - AIDS diagnosis within one year of
  HIV diagnosis
• During 1994-1999, 43 were considered to have
  late diagnosis
• In 2005 40
• Analysis of national data collected from 16 U.S.
  sites during May 2000--February 2003 shows late
  testers were significantly more likely to
• Be younger (aged 18--29 years), Black or Hispanic
• Have been exposed to HIV through heterosexual
  contact
• Have a high school diploma or less education
• Have tested negative for HIV previously before
  their first positive HIV test
• MMWR, July 2003

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Late Diagnosis

• Persons late to test in Texas are more likely to
• Be male
• Be Hispanic
• Be older
• There was no difference based on risk behavior or
  mode of exposure
• Approximately one-third (1/3) of all persons
  diagnosed in Texas are considered late-to-test
• The majority of persons diagnosed late sought HIV
  testing because of illness

Percent of Persons with HIV and AIDS Diagnoses
within 1 Month and 1 Year
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Facility of Last HIV Test

• Whites African Americans are more likely to
  test through private physicians using HMOs
• Hispanics more likely to test at community
  clinics
• An equal number test through hospitals
• The lowest number report testing at traditional
  counseling testing sites

Facility of Last HIV Test, Texas 2005Behavioral
Risk Factor Surveillance System
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Consequences of Late Diagnosis

• Late testing results in missed opportunities for
  preventing HIV infections
• Late diagnosis may also increase the costs of
  hospital care and management of opportunistic
  infections, especially immediately after
  diagnosis
• Direct care costs in the year following HIV
  diagnosis were more than 200 higher for patients
  who presented late
• Late diagnosis and entry to care are associated
  with less favorable prognosis and survival
• HB Krentz, MC Auld, MJ Gill (2004)

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Recommendations

• Encourage the medical community to make HIV
  testing a part of routine medical care
• Promote routine testing in private sectors and in
  public health clinics by partnering with the
  AETC, insurers, FQHCs, indigent clinics, and
  other key health care provider sites.
• Encourage HIV and STD testing in
• substance abuse/detoxification treatment programs
  
• adult correctional facilities and juvenile
  detention facilities
• mental health programs
• homeless shelters and outreach settings
• family planning clinics
• emergency departments

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Recommendations

• Conduct targeted educational and social marketing
  campaigns to provide education on and promote the
  benefits of testing and early access in
  maintenance into medical care.
• Employ testing strategies appropriate to the
  venue such as rapid testing and HIV screening
• Strengthen and support disease intervention
  services
• Ensure prevention messages and rapid testing
  services are available in Spanish
• Promote anonymous testing for those afraid of
  deportation or immigration issues

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Delayed Treatment

• Definition more than three (3) months between
  diagnosis and first HIV related primary medical
  care visit
• According to the CDC approximately 40 of people
  who receive an HIV diagnosis delay a year or more
  before entering primary care.
• Nationally, data suggests that people who delay
  treatment for HIV tend to
• be older and male
• experience problems with substance abuse and/or
  mental health
• have had no regular source of medical care prior
  to diagnosis
• be homeless or unstably housed
• have little or no social support
• have limited formal education HRSA/HIV AIDS
  Bureau

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Consequences Cost

• Delayed entry into care is associated with less
  favorable prognosis and survival
• Delayed entry into care is associated with
  increased cost of hospital care and management of
  opportunistic infections
• Mean annual costs for late presenters were 2.2
  times greater than those for early presenters
• Hospitalizations and immediate initiation of drug
  therapy main drivers of cost
• Increased costs were present even when age,
  gender, risk factor, education, ethnicity and
  living arrangements were held constant
• Krentz HB, Auld MC, Gill MJHIV Medicine 2004,
  593-98

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Delayed Treatment

• According to ARIES data the median time to
  enrollment into services in Texas for newly
  diagnosed who accessed care was one month.
• Ninety percent of clients accessing care were
  enrolled within 8 months
• Ninety-five percent of clients accessing were
  enrolled in within 15 months.

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Reasons for Delayed Treatment

• Data from local assessments and the Medical
  Monitoring Project (MMP) show that people delayed
  entry into medical care because they
• Did not believe medical care was necessary
  because they felt healthy
• Did not believe they could afford care
• Didnt want to take the medications for various
  reasons
• Didnt want to think about being HIV positive
• Were worried that other people will find out
• Didnt think anything could be done
• Were actively using drugs and/or alcohol
• This list is not inclusive of all reasons cited
  in the data nor is it in rank order

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Recommendations

• Ensure linkage to care strategies exists with
  local testing sites
• Deliver effective messaging on the importance and
  benefits of early entry and maintenance in
  medical care
• Assess barriers to care and implement strategies
  to address them
• Make treatment for substance abuse, mental health
  disorders and other conditions available

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Recommendations

• Use short-Term Case Management to Link Newly
  Tested to Care
• Provide resources to help clients learn to
  navigate the local health care system
• Implement effective tracking and follow-up on
  clients referral from testing to care sites

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Unmet Need for Care

• HRSA Definition - PWLHA who have no record of
  accessing any of the following services within
  the last twelve (12) months
• Antiretroviral Therapy (ART)
• CD4
• Viral Load
• Includes clients who have accessed care in the
  past but have dropped out of care and are
  lost-to-follow-up
• Local standards vary from 3 to 12 months as to
  how long a client has not accessed core medical
  services before lost-to-follow-up activities are
  triggered
• None go beyond one-year

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Unmet Need in Texas

• In 2006, 39 (22,000) of PLWHA in Texas had no
  evidence of medical care. 
• Framework does not include Medicare, VA and some
  private payers.
• People with living with HIV not AIDS have greater
  numbers and proportion out of care
• Men and women showed similar proportions out of
  care
• Because PLWHA remain predominantly men, men
  comprise the highest total number of those out of
  care

Number Proportion with Unmet
Excluding Cases diagnosed in TDCJ
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Unmet Need in Texas

• Among PLWHA, Blacks had the greatest number with
  unmet need (8,779).
• Additionally, Blacks had the greatest proportions
  of their population with unmet need, 43 compared
  with 36 of Whites and 37 of Hispanics.
• Among cases with known modes of transmission
• IDU had the highest proportion of cases out of
  care (46.8).
• MSM had the highest total number of cases
  out-of-care

Unmet Need Cases by Mode of Exposure
Race/Ethnicity, 2006
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Unmet Need for Care

• Over three quarters of living cases reside in one
  of the EMA/TGAs
• Houston and Dallas EMAs account for over half of
  all clients with unmet need for care
• The East Texas grouping includes
  all
  counties in the East Texas area
  outside
  the Houston EMA

Unmet Need in Texas, 2006Excluding Cases
diagnosed in TDCJ
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Unmet Need in Texas

• The proportion of living clients with unmet need
  for care are highest in San Antonio and Houston
• The Austin TGA has the lowest proportion of cases
  out of care

Unmet Need in Texas, 2006Excluding Cases
diagnosed in TDCJ
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Reasons for Unmet Need

• The most frequent reasons clients state for not
  being in care or coming late to care are
• Their doctor or nurse told them they did not
  currently need medical care
• They did not want medical care because they did
  not believe it was necessary or because they felt
  healthy
• Financial reasons (i.e., believing they couldnt
  afford care)
• Worried that other people will find out/Privacy
• Actively using drugs and/or alcohol
• Did not want to think about it
• Did not want to take medications
• From the Draft 2008-2010 SCSN the Medical
  Monitoring Project. Reasons are not listed in
  rank order and represent the top cited reasons

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Reason Clients Drop Out of Care

• The Reasons Clients State for Dropping Out of
  Care are
• Actively using drugs and/or alcohol
• Cycling in and out of correctional settings
• Feeling well
• Other things taking priority
• The medication had too many side effects /didnt
  want to take meds
• Didnt want to deal with the system
• Not comfortable with the service providers
• Unable to keep appointments because of work
• Top reasons compiled from local assessment data.
  This list is not comprehensive and is not
  presented in rank order

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Recommendations

• Support medical care providers coordination with
  points of access that are not necessarily part of
  the HIV/AIDS care system include
• emergency rooms
• substance abuse treatment programs
• detoxification programs
• adult correctional facilities and juvenile
  detention facilities
• STD clinics
• mental health programs
• homeless shelters

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Recommendations

• Support lost-to-follow-up activities at the local
  level
• Implement innovative strategies such as Social
  Networking to identify and bring into care
  clients who have never accessed care or those who
  have dropped out of care.
• Use client level data (ARIES/CPCDMS) to identify
  clients who have dropped out of care

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Conclusions

• Late diagnosis, late entry to care, and unmet
  need
• Drive up morbidity
• Drive up costs and mortality
• Are avoidable
• Local dialogue, education, and examination of
  systems is critical

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Questions