Creating a Continuum of Care: The HIV Treatment Cascade in the

Challenges of the
US Cascade of Care
Melanie Thompson, MD
AIDS Research Consortium of Atlanta
Georgia Department of Public Health
The “Gardner Cascade”
Gardner E, et al. CID 2011:52 (Mar 15)
CDC Treatment Cascade (July, 2012)
HIV Care Cascade in Georgia, 2010
Linked to care
Retained in Prescribed ART
Diagnosed 1,970 with HIV disease
Estimated 2,375 individuals with HIV disease (1,970 + 20%)
Linked 1,026 (51%) to care within 3 months of HIV diagnosis
Courtesy J. Kelly, GA Department of Public Health
The “Gardner Cascade”
Gardner E, et al. CID 2011:52 (Mar 15)
Sources of Data:
HIV - Total and Diagnosed
• Total number of persons living with HIV in the US:
– Hall HI, Song R, Rhodes P, et al. Estimation of HIV incidence in the United
States. JAMA 2008; 300:520–9.
• Number of persons diagnosed with HIV in the US:
– Campsmith ML, Rhodes PH, Hall HI, Green TA. Undiagnosed HIV prevalence
among adults and adolescents in the United States at the end of 2006. J
Acquir Immune Defic Syndr 2010; 53:619–24.
Sources of Data: Linkage
• St. Louis, Missouri (1997–2002): 73% in HIV care
within 1 year after HIV diagnosis (Perkins)
• New York City: 64% in care within 3 months of
new HIV diagnosis (Torian)
• ARTAS: 60% receiving only passive referrals to
care linked to HIV care within 6 months. (Gardner)
• “In summary, we conclude that 75% of individuals
with newly diagnosed HIV infection successfully
link to HIV care within 6–12 months after
Perkins D, et al. AIDS Care 2008; 20:318–26.
Torian LV, et al. Arch Intern Med 2008; 168:1181–7.
Gardner LI, et al. AIDS 2005; 19:423–31
Sources of Data: Retention
• Three population-based studies from the US:
45%–55% fail to receive HIV care during any year
(Perkins, Ikard, Olatosi)
• Multiple cohort studies: 25%–44% of HIV-infected
individuals are lost to follow-up (Hill, Arici, Coleman, Mocroft)
• “In summary, ~ 50% of known HIV-infected
individuals are not engaged in regular HIV care.”
Perkins D, et al. AIDS Care 2008; 20:318–26.
Ikard K, et al. AIDS Educ Prev 2005; 17:26–38.
Olatosi BA, et al. AIDS 2009; 23:725–30.
Hill T, et al. J Clin Epidemiol 2010; 11:432–8.
Arici C, et al..HIV Clin Trials 2002; 3:52–7.
Coleman S, et al.. AIDS Patient Care STDS 2007;21:691–701.
Mocroft A, et al. HIV Med 2008; 9:261–9
Source of Data: Need for ART
• In 2012, both DHHS and IAS-USA
recommended that all persons with HIV be
offered ART regardless of CD4 cell count
– Panel on Antiretroviral Guidelines for Adults, and Adolescents. Guidelines for the
use of antiretroviral agents in HIV-1-infected adults and adolescents. Department
of Health and Human Services, March 27, 2012: Available at:
– Thompson MA, et al. Antiretroviral treatment of adult HIV infection: 2012
recommendations of the International Antiviral Society-USA panel. JAMA
2012;308:387-402. doi:10.1001/jama.2012.7961.
• Therefore the number of persons “in need”
of ART is the same as the number of persons
living with HIV, whether diagnosed or
Source of Data: ART
• US (2003): 67% of HIV-infected persons in care
were eligible for ART (CD4 cell count <350
cells/µL);, 21% of these were not receiving
therapy (Teshale)
• British Columbia: 89% of individuals in care
required ART; 27% declined or failed to initiate
therapy. (Lima)
• “We estimate that 80% of in-care HIV-infected
individuals in the United States should be
receiving ART but that 25% of these individuals
are not receiving therapy.”
Teshale E, et al. abstract 12th CROI. Boston, MA, USA: 2005.
Lima VD, et al. PLoS One 2010; 5:e10991.
Source of Data: Viral Suppression
• 2 studies: 78%–87% of individuals receiving
ART, including those receiving initial and
subsequent regimens, had an undetectable
viral load
– Gill VS, Lima VD, Zhang W, et al. Improved virological outcomes in British Columbia
concomitant with decreasing incidence of HIV type 1 drug resistance detection. Clin Infect Dis
2010; 50:98–105.
– Das M, Chu PL, Santos GM, et al. Decreases in community viral load are accompanied by
reductions in new HIV infections in San Francisco.PLoS One 2010; 5:e11068.
• “ ~ 80% of treated individuals have an
undetectable viral load (defined as < 50
CDC Cascade, 2011
MMWR, December 2, 2011;60(47);1618-23.
CDC Cascade Data Sources
• Linkage to care
– Marks G, et al. Entry and retention in medical care among HIV diagnosed persons: a
meta-analysis. AIDS 2010:24:2665-78
– Torian, et al. (see previous)
• Retention in care
– Hall IH, et al. Retention in care of HIV-infected adults in 13 US areas. National HIV Prevention
Conference. Atlanta. August 14-17, 2011.
– Tripathi A, et al. The impact of retention in early HIV medical care on viro-immunological
parameters and survival: a statewide study. AIDS Res Hum Retroviruses 2011;27;751-8.
• Antiretroviral prescription: Medical Monitoring
• Viral suppression: Medical Monitoring Project
June 5, 2012
Systematic monitoring of successful entry into HIV care is
recommended for all individuals diagnosed with HIV (IIA)
Systematic monitoring of retention in HIV care is
recommended for all patients (IIA)
Brief, strengths-based case management for individuals with
a new HIV diagnosis is recommended (IIB)
Intensive outreach for individuals not engaged in medical
care within 6 months of a new HIV diagnosis may be
considered (IIIC)
Use of peer or paraprofessional patient navigators may be
considered (IIIC)
IOM Metrics
7 Core HHS Indicator Measures
HIV Positivity
# HIV positive tests in 12-month period
# HIV tests conducted in 12-mo
Late HIV Diagnosis
# persons with a dx of Stage 3 HIV (AIDS)
within 3 mo of dx of HIV infection in 12-mos
# persons with an HIV diagnosis
in the 12-mos
Linkage to HIV
Medical Care
# who attended a routine HIV medical care
visit within 3 months of HIV dx
# who attended a routine HIV
medical care visit within 3 mo of
HIV dx
Retention in HIV
Medical Care
# with an HIV dx and at least 1 HIV medical
care visit in each 6 mo period of the 24 mo
measurement period, with a minimum of 60
days between the 1st medical visit in the prior
6 mo period and the last medical visit in the
subsequent 6 mo period
# with an HIV diagnosis with at
least 1 HIV medical care visit in
the first 6 mo of the 24‐mo
measurement period
Therapy (ART)
# with an HIV dx who are prescribed ART in 12
# with an HIV diagnosis with ≥ 1
HIV medical care visit in 12 mo
Viral Load
# with HIV diagnosis with a viral load <200
copies/mL at last test in the 12–month period
# with HIV diagnosis who had at
least one HIV medical care visit
in the 12-months
Housing Status
# with HIV diagnosis who were homeless or
unstably housed in the 12-month period
# with HIV diagnosis receiving
HIV services in the last 12
CDC Treatment Cascade (July, 2012)
CDC Treatment Cascade: Race
CDC Treatment Cascade: Age
CDC Treatment Cascade: Risk
Impact of Social Determinants of
Health on the Care Cascade
• Every step is affected by
Stigma and discrimination
Racism, homophobia
Risk of criminalization
High incarceration rates and difficulty with transition
Housing instability
Employment instability
Co-existing conditions: substance use, mental health
Increasing Diagnosis: Challenges
• Testing must be free and accessible
• Stigma deters testing
Fear of loss of job, loss of insurance or increased premiums,
Pre-existing conditions – ACA will address
Rejection by family and friends, effect on children
Domestic violence
• Mixed messages: high impact (targeted) testing vs “know your
status”; funding streams dictate testing availability
• Home HIV testing: not inexpensive; how to track numbers and
• Fourth generation Ag-Ab testing will bring about increased
need for surveillance and services for acute infection
Linkage and Retention: Challenges
• Barriers include Ryan White eligibility
requirements for indigent populations
– Identity, income, residency, HIV status
• Transportation, child care
• Clinics only open when patients are at work;
taking off work costs money, risks job
• Co-morbidities require seeing different doctors
• Frequent doctor visits = disclosure
• Co-pays
• Other life priorities, lack of education about why
care is important
• Depression, substance use disorders
ART and Viral Suppression: Challenges
• Fear of toxicity
• Cost: high co-pays, high deductables,
Medicare donut hole
• Meds = disclosure
• Drugs for co-morbidities
• Potential drug interactions
• Lack of education about benefits
What is Affordable Care?
• “Affordable” premiums are not the whole story
• High deductable plans are unaffordable for many
• High co-pays are often unaffordable and may lead
to inconsistent drug access
• SU/MH benefits often minimal, if present
• Transportation not covered
• Case management not covered
When Insurance Isn’t Enough
• It is October
• Denise is a 38 yo black woman with a new HIV
diagnosis with CD4 count of 675 cells/µL
• She works in a restaurant and has insurance
– Her insurance has a $2000 deductable
• She began EFV/TDF/FTC because of ease of use
but could not tolerate EFV
• She changed to ATV/RTV + TDF/FTC but could not
tolerate ritonavir
• She then started RAL + TDF/FTC
Lessons Learned: PCIP
• Most existing Ryan White clinics not prepared or
structured to file for and receive insurance
payments: patients on PCIP must seek other care
• Copays and deductables now paid by state RW
funds may not be covered for ACA plans
• Traditional health insurance often does not
provide wrap-around services: what will RW
cover? Patients dependent upon these services
a few thoughts…
• Base cascades on real data: build systems to collect
• Need to coordinate with databases outside of public
health: Medicare/Medicaid, Vital Statistics, pharmacy
• Need standard definition of each indicator (harmonize
• Need resources and guidance to assist local
jurisdictions in creating their own care cascades
– Use cascade to monitor specific targeted populations over
time: race/ethnicity, age, risk, gender
– Use local outcomes to build cascades of geographic areas:
states, local jurisdictions, clinics, zip codes, census tracts
– Use cascade to educate and advocate
Operational research to optimize / standardize measurement
Comparative evaluation of monitoring strategies in conjunction
with intervention studies
Comparison of retention measures with one another
Comparative evaluation of case management in community
Comparative evaluation and cost effectiveness for best practices for
implementation of case management interventions
Comparative evaluation of other intervention approaches: peer
support, patient navigation, health literacy, life skills
Prospective evaluation of pay for performance interventions
• We must fund wrap-around services,
transportation, case management, patient
navigation: RW safety net for insured patients
• We must have an ARV safety net
– Coverage for deductables and ARV co-pays for
persons with private insurance who meet criteria
• We must have a safety net for undocumented
persons who will not be accepted in Medicaid
expansion programs
Back Up Slides
IOM Standards
• Proportion of people newly diagnosed with HIV with a CD4+ cell count
>200 cells/mm3 and without a clinical diagnosis of AIDS
• Proportion of people newly diagnosed with HIV who are linked to
clinical care for HIV within 3 months of diagnosis
• Proportion of people with diagnosed HIV infection who are in
continuous care (two or more visits for routine HIV medical care in the
preceding 12 months at least 3 months apart)
• Proportion of people with diagnosed HIV infection who received two or
more CD4 tests in the preceding 12 months
• Proportion of people with diagnosed HIV infection who received two or
more viral load tests in the preceding 12 months
• Proportion of people with diagnosed HIV infection in continuous care
for 12 or more months and with a CD4+ cell count ≥350 cells/mm3
• Proportion of people with diagnosed HIV infection and a measured
CD4+ cell count <500 cells/mm3 who are not on ART
• Proportion of people with diagnosed HIV infection who have been on
ART for 12 or more months and have a viral load below the level of
• All-cause mortality rate among people diagnosed with HIV infection
Supportive services
• Proportion of people with diagnosed HIV infection and
mental health disorder who are referred for mental
health services and receive these services within 60
• Proportion of people with diagnosed HIV infection and
substance use disorder who are referred for substance
abuse services and receive these services within 60
• Proportion of people with diagnosed HIV infection who
were homeless or temporarily or unstably housed at
least once in the preceding 12 months
• Proportion of people with diagnosed HIV
infection who experienced food or nutrition
insecurity at least once in the preceding 12
• Proportion of people with diagnosed HIV
infection who had an unmet need for
transportation services to facilitate access to
medical care and related services at least once
in the preceding 12 months

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