HIV ADVANCEMENTS IN CARE AND UNDERSTANDING STIGMA AND

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HIV ADVANCEMENTS IN CARE AND UNDERSTANDING STIGMA AND LINKING PROPER CARE TO POSITIVE PATIENTS

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

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 (Viral load) Mutation

Successful HAART Clinician experience Communication skills Multidisciplinary team Clinician Replication rate (Viral load) Mutation rate Drug Virus (Resistance) Tropism Latent HIV reservoirs Patient Adherence Access to care Access to medication Life situation Disease stage Potency Pharmacokinetics (dosage schedule) Tolerability Toxicity Convenience Resistance

Adherence Impacts HIV-Related Mortality and AIDS Progression*1 For every 10% decrease in adherence 16%

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. 7 th CROI 2000. Abstract 73. 5

Which of these HIV-related feelings do people experience the most? 1) Anger 2) Shame

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.

* 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

• 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 people living with HIV perceive themselves

How others perceive people living with or affected by HIV

How others perceive people living with or affected by HIV

 • Ignorance or an incomplete understanding about HIV and how it may be

• 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,

• 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

• 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

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)

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

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

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

• 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

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

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

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 CD 4 Cell Count

When to Start Treatment 2008 DHHS Guidelines 2008 IAS-USA Guidelines CD 4 Cell Count Viral Load (cells/mm 3) (copies/m. L) 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 Treat HIV-associated nephropathy Any value Treat HIV/HBV coinfection when HBV treatment is indicated Any value Clinical Category AIDS-defining illness or severe symptoms* Asymptomatic Treat Available at: http: //www. aidsinfo. nih. gov/Content. Files/Adultand. Adolescent. GL. 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

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/Content. Files/Adultand. Adolescent. GL. pdf. Revision November 3, 2008.

Adherence Issues in the Treatment of HIV/AIDS Impact of adherence on virologic efficacy of

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

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/Content. Files/Adultand. Adolescent. GL. pdf. Revision November 3, 2008.

Adherence and HAART Success of HAART hinges on long-term adherence Address and ameliorate modifiable

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): S 184 -S 190; 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

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 Feasible without active patient participation No Yes Cost efficient Yes Feasible in routine clinical practice Yes Bangsberg DR. J Infect Dis. 2008; 197: S 272 -S 278.

Adherence to HAART: Strategies to Measure Adherence Pill Count Clinic Home By Based Telephone

Adherence to HAART: Strategies to Measure Adherence Pill Count Clinic Home By Based Telephone Precise No Yes Detects adherence patterns (interruptions and discontinuations) No Yes* Real-time monitoring to detect incomplete adherence before viral rebound No No No Compatible with pill-box organizers 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: S 272 -S 278.

Strategies to Improve Adherence to HAART Establish readiness to start therapy Provide education on

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/Content. Files/Adultand. Adolescent. GL. pdf. Revision November 3, 2008.

Assessing Readiness for HAART What is your attitude toward HAART? Do you believe that

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

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

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. 8 th CROI, Chicago, 2001. #477; Ostrow D. 8 th CROI, Chicago, 2001. #484

Adherence Defined as the patient’s behavior coinciding with an agree-on therapeutic regimen on a

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

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

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%

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. 13 th IAC; 2000; Durban. Abstract 421. 4 Months 8 Months

Relationship Between Adherence and HIV Suppression *Series of 886 treatment-naive HIV patients; CD 4

Relationship Between Adherence and HIV Suppression *Series of 886 treatment-naive HIV patients; CD 4 cell count <500 x 106 cells/L or plasma viral load >5000 copies/m. L. 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 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

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

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There are many ASOs and HIV/AIDS groups throughout the United States that are specifically

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

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“Machismo” in the Hispanic/Latino culture can sometimes cause people living with HIV/AIDS to feel

“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

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“Machismo” in the Hispanic/Latino culture can sometimes cause people living with HIV/AIDS to feel

“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

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It’s important to know that even if you’re undocumented, you are entitled to HIV

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

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Family responsibilities, financial limitations, and fear of disclosure can prevent someone from receiving the

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

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In all cultures, there are beliefs that men and women have distinct roles. However,

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

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Many people believe in alternative medicines, folk healers, and spiritual faith to heal HIV/AIDS.

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

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 Even if you don’t feel sick, the virus is still affecting your body.

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 CD 4+ count is below 350 cells/mm 3 or you have certain conditions, you should start HIV treatment � If your CD 4+ count is between 350 cells/mm 3 and 500 cells/mm 3, it’s recommended that you begin HIV treatment � If your CD 4+ count is above 500 cells/mm 3 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 Info.

There is support available to specifically help the Hispanic/Latino community • The AIDS Info. Net – 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 • Medline. Plus – SIDA: www. nlm. nih. gov/medlineplus/spanish/aids. html 74

� The Hispanic/Latino community is significantly impacted by the HIV/AIDS epidemic � Obtaining factual

� 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!

HOPE!

GRACIAS! Preguntas?

GRACIAS! Preguntas?

 • www. positivecharge. com • www. thebody. com • www. gmhc. org, 1

• 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