HIV Advancements in Care and Understanding Stigma and Linking Proper Care to Positive patients

1. HIV Advancements in Care and Understanding Stigma and Linking Proper Care to Positive patients Dr. Fernando Garcia, MD RGV Hope Connections Harlingen/Corpus Christi

2. Objectives: • 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

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

4. For every 10% decrease in adherence Adherence Impacts HIV-Related Mortality and AIDS Progression*1 *Prospective, observational study of 950 ART-naive patients treated with triple- combination therapy; adherence was estimated by prescriptions dispensed. 1. Hogg et al. 7th CROI 2000. Abstract 73. 16% increase in HIV-related mortality 1.17 times higher likelihood of progression to AIDS and/or death 5

7. Which of these HIV-related feelings do people experience the most? • Anger • Shame • Loneliness • Depression • Other

13. * Stigma and HIV/AIDS: A Review of the Literature, Deborah L. Brimlow, Jennifer S. Cook, and Richard Seaton, editors.

16. 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

22. How people living with HIV perceive themselves

23. Howperceive people living with or affected by HIV others

25. 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

30. 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

31. 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.

32. 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.

33. What kind of stigma is Yvette experiencing? • Self stigma • Social stigma • Both kinds of stigma • What can Yvette do?

34. ‘ ‘ ‘ ‘ I am not ready to talk to my family about my 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 feel less stressed and more in control of my situation.

35. ‘ ‘ ‘ ‘ I researched online how to tell my closest friend 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 has taken a lot of weight off my shoulders. I feel more optimistic.

36. 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

37. 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

38. 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 forassistance 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.

39. 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?

40. When to Start Treatment Available at: http://www.aidsinfo.nih.gov/ContentFiles/AdultandAdolescentGL.pdf. Revision November 3, 2008; Hammer SM, et al. JAMA. 2008;300:555-570.

41. 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.

42. Adherence Issues in theTreatment 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

43. Importance ofHIV 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.

44. 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.

45. Adherence to HAART:Strategies to Measure Adherence Bangsberg DR. J Infect Dis. 2008;197:S272-S278.

46. Adherence to HAART:Strategies to Measure Adherence *Data on interruption collected by means of patient interview during pill count. Bangsberg DR. J Infect Dis. 2008;197:S272-S278.

47. Strategies toImprove 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.

48. 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.

49. Patients Taking HAART • Do you manage your own medications? • If not, who manages them for you? • What HIV medications do you take and what is their dosage? • 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.

50. 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 Predictors of Adherence Gebo KA. 8th CROI, Chicago, 2001. #477; Ostrow D. 8th CROI, Chicago, 2001. #484