Opt-in HIV Testing:Counterpoint
Douglas G. Fish, MD
Asst. Professor of Medicine
Head, Division of HIV Medicine
Albany Medical College, Albany, NY
November 15, 2006
Epidemiology of HIV/AIDS in the US
AIDS incidence by year By risk group
Valdiserri R, et al. 10th CROI, Boston 2003, #4; Data from the CDC
0
1,000
2,000
3,000
4,000
5,000
6,000
7,000
8,000
9,000
10,000
94 95 96 97 98 99 00 01
Year
Nu
mb
er
of
HIV
dia
gn
os
es
MSM
Heterosexual
IDU
MSM/IDU
Year of diagnosis
Nu
mb
er o
f ca
ses
0
10,000
20,000
30,000
40,000
50,000
60,000
70,000
80,000
95 96 97 98 99 00 01
What are the goals?
Diagnose people with HIV Diagnose HIV earlier
39% with AIDS within 1 year of HIV diagnosis in 2004*
Diagnose people with their consent Maintain confidentiality
*CDC, HIV/AIDS Surveillance Report, Vol. 16, 2005
What are the barriers to this goal? Lack of perceived risk 61% Their doctor never recommended it They worry about confidentiality They don’t know where to get tested They don’t like needles or giving blood They’re afraid they will test positive
2006 Kaiser Family Foundation Survey of Americans on HIV/AIDS
The Written Consent
How much of a barrier is it, really? Allows for an exchange of information Patients’ questions answered Revised consent form is quick
good information can be given to the patient
Objectively documents the interaction
Provider Barriers to Testing
Perception of limited risk Fitting HIV testing in at all Consenting process Fear of a positive result, and having to
deal with it Tracking patients to get them into care
Written vs Verbal Consent
Definitive documentation with written consent
Preserves the true meaning of consenting process
Less prone to subtle coercion
Informed Consent vs Assent
Opt-out assent: “The patient will be notified that the test will be performed, and consent is inferred unless the patient declines.”
Informed consent: Explanation of the risks, benefits and alternatives to testing, and some attempt to ensure that these are understood
“I thought I had already been tested?” Among those reporting having been
tested for HIV/AIDS, 23% thought that HIV testing was done as part of a routine exam
A third thought that blood drawn at a doctor’s office was automatically tested for HIV “I must be fine.”
Kaiser Family Foundation Survey of Americans on HIV/AIDS, 2004
HIV Testing in Pregnancy
Huge success in decrease of mother-to-child HIV transmission
95% of mothers agree to testing
New York State led the way
Yet done with current, informed consenting process
Cholesterol check or PSA? HIV ELISA is a screening test
Some who screen positive won’t have it
A significant number who screen positive will
Unless using the rapid test, the diagnostic test (Western blot) is done reflexively
Prostate Cancer or AIDS
Life-altering diagnosis
One can’t ever be fully prepared, but shouldn’t we try?
The individual before me is my patient Duty to inform, respect autonomy &
protect Doesn’t have to be at the expense of the
public health
HIV: Exceptional or Not?
Still significant stigma to HIV diagnosis
Ramifications for insurance, health care, job and societal/cultural acceptance
Potential destigmatization of testing does nothing to mitigate stigma for those who test positive
An HIV-positive Diagnosis
Stressful Presented insensitively adds to the
traumaFirst do no harm
Requires additional information be relayed immediately
Mandates of linkage to care may deter provider offices and emergency departments from testing
Are we engaging the PWA community?
Don‘t they have something to teach us?
They have been through this.
Have we asked them?
We should engage the infected/affected community in this discussion.
Do patients have a right not to know their HIV status?
Public health – the greater good?Decreased transmissionEarly treatmentAvoid hospitalization
Telling people what’s good for them
Potential Unintended Consequences False sense of security if negative?
The burden of disproving the false positives
Could routine, opt-out testing drive people from care?
People not in care at all
More alike than different
HIV testing should be broadened Earlier HIV diagnosis yields better
prognosis We have better therapies Access is available in New York Routine HIV testing appears cost-
effective
Opt-How? Opt-ion… Prenatal testing was the pilot Broaden HIV testing, absolutely Educational campaign to health care
providers Any provider can consent
Educational campaign to patients Know your status
Maintain written, informed consent