HIV ADVANCEMENTS IN CARE
AND UNDERSTANDING STIGMA
AND LINKING PROPER CARE
TO POSITIVE PATIENTS
Dr. Fernando Garcia, MD
RGV Hope Connections
Harlingen/Corpus Christi
Objectives:
1.
2.
3.
4.
To review general concepts of adherence.
To review ideas of self management skills
for improvement of adherence.
How to apply Adherence to Patient Care.
Review research/studies about adherence
Successful HAART
Clinician experience
Communication skills
Multidisciplinary team
Clinician
Replication rate
Potency
Pharmacokinetics
(Viral load)
Mutation rate
Drug
Virus
(Resistance)
Tropism
Latent HIV reservoirs
Patient
Adherence
Access to care
Access to medication
Life situation
Disease stage
(dosage schedule)
Tolerability
Toxicity
Convenience
Resistance
Adherence Impacts HIV-Related
Mortality and AIDS Progression*1
For every 10%
decrease in
adherence
16% increase in
HIV-related mortality
1.17 times higher likelihood
of progression
to AIDS
and/or death
*Prospective, observational study of 950 ART-naive patients treated with
triplecombination therapy; adherence was estimated by prescriptions
dispensed.
1. Hogg et al. 7th CROI 2000. Abstract 73.
5
Which of these HIV-related feelings do people
experience the most?
1)
Anger
2)
Shame
3)
Loneliness
4)
Depression
5)
Other
* Stigma and HIV/AIDS: A Review of the Literature, Deborah L. Brimlow,
Jennifer S. Cook, and Richard Seaton, editors.
• Is part of our culture/society
• Can have a negative effect
on people living with HIV
• Exists even in countries
where there is a high rate of
HIV infection
• Is often related to beliefs
and judgments about who
gets HIV
How people
living with
HIV perceive
themselves
How others
perceive people
living with or
affected by HIV
• Ignorance or an incomplete
understanding about HIV and how
it may be transmitted
• Fear of catching HIV or being
connected to someone who has it
• Values that link people with HIV to
“improper” or “immoral” behavior
• Assumptions and beliefs about who
gets HIV based on stereotypes and
misconceptions
• Get informed! Know the facts about HIV, so you
can educate others, including friends and family
• Find a support group or mental health service
• Share your feelings with someone you trust
• Talk to and learn from other HIV-positive people
• Find time to relax
• Address problems and issues right away
Don’t let stigma have power over you –
empower yourself to challenge the attitudes, beliefs,
and behaviors that contribute to stigma.
Yvette has heard the local
kids make jokes about people
with HIV and is afraid that her
children will be picked on if
anyone finds out she is HIV
positive. So, she goes to a
healthcare provider far away.
She also has a hard time
finding someone to watch
her children when she leaves.
This leaves her feeling tired
and depressed.
What kind of stigma is
Yvette experiencing?
1) Self stigma
2) Social stigma
3) Both kinds of stigma
What can Yvette do?
diagnosis. But I went to a local support group and
met some other HIV-positive people, including a
man who went with me to my next doctor’s
appointment and helped me ask the right questions.
‘‘
‘‘
I am not ready to talk to my family about my
I feel less stressed and more in control of my
situation.
that I am HIV positive. I trust her more than anyone
else. It wasn’t easy, but she was understanding.
Now, she has agreed to watch my kids when I go to
my healthcare provider. I have also started going
to an AIDS service organization, where they are
providing me with support. I’m not ready to tell just
anyone about my condition, but letting a few know
‘‘
‘‘
I researched online how to tell my closest friend
has taken a lot of weight off my shoulders. I feel
more optimistic.
• To privacy and confidentiality of their medical
information, including their HIV status
• Not to have their HIV status disclosed by anyone
without their permission
• To access healthcare regardless of their HIV status
• To certain protections under the Americans with
Disabilities Act (ADA), Health Insurance Portability
and Accountability Act (HIPAA), or other applicable
laws
If an HIV-positive person’s rights are violated, she or
he has the right to seek legal advice
If you are feeling stigmatized or face
discrimination, you have options




Speak to your healthcare team
Talk to a therapist or counselor
Reach out to HIV-specific organizations like ASOs,
support groups, advocates, and educators
Contact organizations that specifically work on HIV
legal issues
When people feel better educated about HIV,
they may choose to disclose that they are HIV positive to the
people around them, including:

Sexual partners

People that have shared needles

Employers

Family members and friends

Healthcare providers
You may want to speak with your healthcare provider for
assistance with counseling and disclosure services.
Counselors, case managers, and social workers can help
guide you through the process of disclosure or advise you
if you feel you are being discriminated against.
Before you disclose that you are
HIV positive, there are some things
you should consider

Why do you want to tell them?

How do you think they will react?

Are you prepared to explain about HIV?


Do you have someone you can turn to
for support?
Are you ready to accept how they will react?
When to Start Treatment
2008 DHHS
Guidelines
2008 IAS-USA
Guidelines
CD4 Cell Count
Viral Load
Clinical Category
(cells/mm3)
(copies/mL)
AIDS-defining illness
or severe symptoms*
Any value
Any value
Treat
<200
Any value
Treat
200 to 350
Any value
Treat
>350
>100,000
Consider treatment
>350
<100,000
Consider treatment
in some patients
Pregnant women
Any value
Any value
Treat
HIV-associated
nephropathy
Any value
Any value
Treat
HIV/HBV coinfection
when HBV treatment
is indicated
Any value
Any value
Asymptomatic
Treat
Available at: http://www.aidsinfo.nih.gov/ContentFiles/AdultandAdolescentGL.pdf.
Revision November 3, 2008; Hammer SM, et al. JAMA. 2008;300:555-570.
Consider
Treatment
Treatment Goals

Primary goals
 Reduce
HIV-related morbidity and prolong survival
 Improve quality of life
 Restore and preserve immunologic function
 Maximally and durably suppress viral load
 Prevent vertical HIV transmission
Available at: http://www.aidsinfo.nih.gov/ContentFiles/AdultandAdolescentGL.pdf.
Revision November 3, 2008.
Adherence Issues in the
Treatment of HIV/AIDS




Impact of adherence on virologic efficacy of antiretroviral agents
Factors that affect adherence
Relationship between treatment adherence and emergence of
resistance to antiretroviral drug classes/agents
Strategies to improve or facilitate antiretroviral
adherence
Importance of
HIV Expertise in Clinical Care

Multiple studies show expertise in HIV care improves
 Survival
 Rate
of hospitalizations
 Compliance with guidelines
 Adherence to medications

DHHS panel recommendation
 HIV
primary care by a clinician with at least 20, and
preferably 50, HIV-infected patients
Available at: http://www.aidsinfo.nih.gov/ContentFiles/AdultandAdolescentGL.pdf.
Revision November 3, 2008.
Adherence and HAART


Success of HAART hinges on long-term adherence
Address and ameliorate modifiable barriers to incomplete
adherence prior to initiating HAART




Diagnosing and treating depression
Treating drug and alcohol dependence
Strengthening patient-provider relationship
Fostering social support through incorporation of partners or other important
family members
Bangsberg DR, et al. J Gen Intern Med. 1999;14:446-448; Dalessandro M, et al. J Clin Psychopharmacol.
2007;27:58-61; Sullivan LE, et al.Clin Infect Dis. 2006;43(suppl 4):S184-S190; Lucas GM, et al. AIDS.
2002;16:767-774; Arnsten JH, et al. J Gen Intern Med. 2002;17:377-381; Beach MC, et al.
J Gen Intern Med. 2006;21:661-665; Altice FL, et al. JAIDS. 2001;28:47-58; Remien RH, et al.
AIDS. 2005;19:807-814.
Adherence to HAART:
Strategies to Measure Adherence
Patient Interview
Clinician
Web-Based
Precise
No
Possibly
Detects adherence patterns
(interruptions and discontinuations)
Yes
No
Real-time monitoring to detect incomplete
adherence before viral rebound
No
No
Compatible with pill-box organizers
Yes
Yes
Feasible without active patient participation
No
Yes
Cost efficient
Yes
Yes
Feasible in routine clinical practice
Yes
Yes
Bangsberg DR. J Infect Dis. 2008;197:S272-S278.
Adherence to HAART:
Strategies to Measure Adherence
Pill Count
Clinic Home
By
Based Based Telephone
Precise
No
Yes
Yes
Detects adherence patterns
(interruptions and discontinuations)
No
Yes*
Yes*
Real-time monitoring to detect incomplete
adherence before viral rebound
No
No
No
Compatible with pill-box organizers
Yes
Yes
Yes
Feasible without active patient participation
No
No
No
Cost efficient
No
No
Yes
Feasible in routine clinical practice
No
No
Yes
*Data on interruption collected by means of patient interview during pill count.
Bangsberg DR. J Infect Dis. 2008;197:S272-S278.
Strategies to
Improve Adherence to HAART

Establish readiness to start therapy

Provide education on medication dosing

Review potential side effects

Anticipate and treat side effects

Utilize educational aids including pictures, pillboxes, and calenders

Engage family, friends

Simplify regimens, dosing, and food requirements


Utilize a team approach with case managers, nurses, pharmacists, and peer
counselors
Provide accessible, trusting health care team
Available at: http://www.aidsinfo.nih.gov/ContentFiles/AdultandAdolescentGL.pdf.
Revision November 3, 2008.
Assessing Readiness for HAART





What is your attitude toward HAART?
Do you believe that HAART is effective?
What do you hope these medications will do for
you?
Are you ready to take the medication every day,
around the same time each day?
Are you committed and motivated to take the
medication every day for the rest of you life?
Available at: http://aidsetc.org/aidsetc?page=cm-302_adhere.
Patients Taking HAART

Do you manage your own medications?


What HIV medications do you take and what is their dosage?



If not, who manages them for you?
When do you take these?
How do you remember to take your medications?
How many doses of your HIV medication have you missed in the last
72 hours, last week, last 2 weeks, and last month?
Available at: http://aidsetc.org/aidsetc?page=cm-302_adhere.
Predictors of Adherence
Not predictive

Race

Gender


Disease stage
H/O substance abuse
Negative

Active IDU

Active alcohol abuse
(>14 drinks/week)

Active psychiatric disease

Cumulative impact of HIV
Positive

Patient belief in HAART

Physician experience

Social supports

Adherence to office visits
Gebo KA. 8th CROI, Chicago, 2001. #477; Ostrow D. 8th CROI, Chicago, 2001. #484
Adherence
Defined as the patient’s behavior coinciding with an
agree-on therapeutic regimen on a collaborative
partnership between the patient and health care takers.
 It will empower the patient with the capacity to
improve his medical care.
 It includes medications, appointment with labs,
doctors, case managers and HIV maintenance care.
 Compliance is the behavior of the patient coinciding
with the physician advice.

Adherence still the greater barrier to overall
therapeutic success.
There is not a perfect strategy for optimal
adherence.
 Requires a multi-factorial approach.
 Approaches should include cultural,
psychological, social, medical and economic
situation of the patient.
 Age, race, education and gender are not proven to
predict adherence, but still controversial.

Other Barriers to Adherence









Depression
Acute/Chronic mental illness
Cognitive impairment
Substance abuse
Health beliefs/fears
Unwillingness to start therapy
Coping skills
Patient-Physician relationship
Domestic violence
What Happens
to Adherence Over Time?
Adherence Declines Over Time (Treatment Fatigue)
100%
80%-100%
0%-80%
80
70
Patients (%)
60
50
40
30
20
10
0
1 Month
Mannerheimer. 13th IAC; 2000; Durban. Abstract 421.
4 Months
8 Months
Relationship Between Adherence and HIV
Suppression
*Series
of 886 treatment-naive HIV patients;
CD4 cell count <500 x 106 cells/L or plasma
viral load >5000 copies/mL.
1. Low-Beer S et al. JAIDS. 2000;23:360-361. Letter.
2. Paterson DL et al. Ann Intern Med. 2000;133:21-30.
2
†Prospective,
observational study of
81 HIV patients.
‡MEMS, Medication Events
Monitoring
System.
Increasing Likelihood
of Resistance
Efficacy, Resistance, and Adherence
Partially
effective
regimen
Highly
effective
regimen
Increasing Level of Adherence
Why Do Patients Miss Doses?
% 0
Too busy/simply forgot
Away from home
Change in daily routine
Felt depressed/overwhelmed
Took drug holiday/medication break
Ran out of medication
Too many pills
Worried about becoming 'immune'
Felt drug was too toxic
Wanted to avoid side effects
Didn't want others to notice
Reminder of HIV infection
Confused about dosage direction
Didn't think it was improving health
To make it last longer
Were told the medicine is no good
Gifford et al. JAIDS 2000;23:386–395.
10
20
30
40
50
60
52
46
45
27
20
20
19
19
18
17
17
16
14
13
10
9
Reasons given
for missing
antiretroviral doses
(structured questionnaire)
POSSIBLE INTERVENTIONS
Simplify dosing schedule
Decrease pill burden
Other
57
58
There are many ASOs and HIV/AIDS
groups throughout the United States
that are specifically for Hispanic/Latino
people living with HIV and provide
resources in both English and Spanish.
59
60
“Machismo” in the Hispanic/Latino culture can
sometimes cause people living with HIV/AIDS to
feel rejected or discriminated against.
If other people’s attitude and behavior are
affecting you, you can:
• Speak to a therapist, a counselor, or a
healthcare team member
• Reach out to HIV-specific organizations
like ASOs, support groups, advocates,
and educators
• Contact organizations that specifically work
on HIV legal issues
• Educate and empower yourself to
address them
61
62
“Machismo” in the Hispanic/Latino culture can
sometimes cause people living with HIV/AIDS to
feel rejected or discriminated against.
If other people’s attitude and behavior are
affecting you, you can:
• Speak to a therapist, a counselor, or a
healthcare team member
• Reach out to HIV-specific organizations
like ASOs, support groups, advocates,
and educators
• Contact organizations that specifically work
on HIV legal issues
• Educate and empower yourself to
address them
63
64
It’s important to know that even if you’re
undocumented, you are entitled to HIV care
without risking deportation. There are many
services, programs, and resources
to help people with HIV get the care they
need, even if they are undocumented or have
no insurance or low incomes.
65
66
Family responsibilities, financial
limitations, and fear of disclosure can
prevent someone from receiving the
care and treatment they need. There
are many ASOs and clinics where
medical care, counseling, and support
are available.
67
68
In all cultures, there are beliefs that
men and women have distinct roles.
However, no matter the culture, every
person is ultimately responsible for
themselves and should be respected
by others.
69
70
Many people believe in alternative
medicines, folk healers, and spiritual faith
to heal HIV/AIDS. It’s important to know that
there are FDA-approved prescription
medicines that can help people manage their
HIV. Be sure to discuss all therapies that you
may be on or considering with your doctor.
71
72
Even if you don’t feel sick, the virus is still affecting your
body. Regular checkups with an HIV healthcare provider
are extremely important, even when you don’t feel sick.
You and your doctor will discuss when and if you should
begin treatment. The Department of Health and Human
Services (DHHS) adult treatment guidelines recommend:


If your CD4+ count is below 350 cells/mm3 or
you have certain conditions, you should start HIV
treatment

If your CD4+ count is between 350 cells/mm3
and 500 cells/mm3, it’s recommended that you
begin HIV treatment

If your CD4+ count is above 500 cells/mm3
and/or are pregnant, your doctor may also
recommend you to start an HIV treatment
73
There is support available to specifically help the
Hispanic/Latino community
• The AIDS InfoNet – Español:
www.aidsinfonet.org/?lang=spa
• CDC – VIH/SIDA:
www.cdc.gov/hiv/spanish/default.htm
• Latino Commission on AIDS:
www.latinoaids.org/esp
• The Body en Español:
www.thebody.com/espanol.shtml
• MedlinePlus – SIDA:
www.nlm.nih.gov/medlineplus/spanish/aids.html
74

The Hispanic/Latino community is significantly
impacted by the HIV/AIDS epidemic

Obtaining factual information can empower
a community to dispel myths that potentially
prevent people living with HIV/AIDS from
seeking care and treatment

Find a support network to assist with
other challenges and obstacles

Be sure to use the brochure during
your next appointment
75
HOPE!
GRACIAS!
Preguntas?
• www.positivecharge.com
• www.thebody.com
• www.gmhc.org, 1-800-243-7692
• www.hivlawandpolicy.org
• www.latinoaids.org, 1-212-675-3288
• www.poz.com