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Talking HIV to the Masses (Translating Advanced Science to Lay Audiences). Derrick Butler. MD, MPH To Help Everyone H ealth and Wellness Centers Los A ngeles, CA. An all too common scenario…. Introduction.
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Talking HIV to the Masses(Translating Advanced Science to Lay Audiences) Derrick Butler. MD, MPH To Help Everyone Health and Wellness Centers Los Angeles, CA
Introduction • Important information about HIV research, treatment, and prevention need to be disseminated not just to the experts, but to the general public, non-HIV treating providers/ staff and most importantly, our clients. • There has been a true lack of effective communication in this arena.
Somber Reality • America has been noted to be deficient in science and math education compared to other developed countries. • Data from the 2006 National Assessment of Adult Literacy (NAAL) released by the U.S Department of Education found that only 12 percent of consumers have proficient health literacy skills.
The need for effective Communication • Clients are increasingly people of color with varied cultural and community beliefs. Many times their knowledge is based on myth and ignorance. • Many clients have backgrounds of poverty, poor education and little basic knowledge about health.
Steps for Delivering Information Effectively • Identify the intended audience and define/research key health problems or interests • Engage the audience and determine their needs, beliefs, interests and level of knowledge of the topic • Determine key concepts and messages based on the knowledge of the audience • Evaluate the audience’s satisfaction and understanding
Translating the science • Understand the science yourself. Be the expert in the room. • Understand your audience and what they need to know and what message/information you are trying to deliver.
Keys to presenting the materials • Make your message clear • Give the most important message first to quickly engage the audience. • Limit the number of messages- (no more than 3-4 per section)
Therapy is Easier, More Potent, and Less Toxic in Single-Tablet Regimens
Presenting the materials • Focus on what the audience needs to know (not everything you know) • Develop one idea or topic fully before moving on to the next • Avoid lengthy lists
About the HIV Virus • HIV: the Human Immunodeficiency Virus • It is a virus that attacks the body’s immune system, making people more likely to get other infections • When a person becomes very sick from HIV, they may have developed AIDS (Acquired Immune Deficiency Syndrome)
How the HIV Virus is Spread • HIV is primarily found in the blood, semen, vaginal fluid or breast milk of an infected person1 • HIV is transmitted in 3 main ways2: • Through unprotected sex (anal, vaginal or oral) • Through sharing contaminated needles • From an infected mother to her child (before or during birth, or through breastfeeding) 1 – CDC. HIV/AIDS – Questions and Answers – Which Body Fluids Transmit HIV? October 2006. Available at: http://www.cdc.gov/hiv/resources/qa/qa37.htm. Accessed May 11, 2009. 2 – CDC. HIV/AIDS – Basic Information. September 2008. Available at: http://www.cdc.gov/hiv/topics/basic/. Accessed May 11, 2009.
Presenting the Materials • Choose your words carefully: - Respect and value the audience (don’t talk down or preach) - Use a tone that encourages the audience - Limit the use of jargon, technical or scientific language (Don’t assume!) - Use familiar analogies
Presenting the materials • Limit the use of statistics and use general words like most, many, half rather than 80% etc. • Avoid unnecessary abbreviations and acronyms
Here in the United States 2011: More than 1 million Americans living with HIV1 More than 46,000 Americans newly infected2 17 1 – U.S. Centers for Disease Control and Prevention (CDC). HIV Prevalence Estimates – United States, 2006. MMWR. 2008;57:1073-1076. 2 – CDC. HIV/AIDS Surveillance Report, 2007. Vol. 19. Atlanta: U.S. Department of Health and Human Services, Centers for Disease Control and Prevention; 2009:7.
Presenting the materials • Visuals are very effective in communicating the materials and ideas • Label visuals with a caption • Make sure they are acceptable to the intended audience. (Literacy level, cultural norms, political beliefs) • Types used- Photographs, Drawings, pie charts, columns, graphs, cartoons.
General Population and HIV Cases:Race/Ethnicity in 46 States (2010) HIV Cases (n=47,129) General Population (n=292,196,890) Hispanic/ Latino 20% White 65% Hispanic/ Latino 16% Black 46% White 29% Black 12% Asian 4% Asian 2% Native Hawaiian/ Other Pacific Islander <1% American Indian/ Native Alaska 1% American Indian/ Native Alaska 1% Native Hawaiian/ Other Pacific Islander <1% CDC. HIV Surveillance Report, 2010. Available at: http://www.cdc.gov/hiv/surveillance/resources/reports/2010report/.
HIV Prevalence by Race/Ethnicity and Sex in the US (Through 2006) Estimated HIV Prevalence (per 100,000 population) by Race/Ethnicity and Sex, US – 2006 3000 Male Female 2388 2500 2000 Prevalence rate per 100,000 population 1500 1122 883 1000 395 500 340 263 220 127 63 46 0 White Black Hispanic/Latino Asian/Pacific Islander American Indian/ CDC HIV/AIDS Facts. October 2008. Available at http://www.cdc.gov/hiv/topics/surveillance/resources/factsheets/pdf/prevalence.pdf. Accessed July 24, 2009. 21
Awareness of HIV Serostatus:Estimates of Transmission ~25% Unaware of Infection ~54% of New Infections Percent ~75% Aware of Infection ~46% of New Infections People Living With HIV (1,039,000-1,185,000) New Sexual infections/Year (~32,000) Marks G. AIDS. 2006;20:1447-1450.
T-Cell Count1,2 500 cells/mm3 or more Normal immune system 200-499 cells/mm3 Weakened immune system Less than 200 cells/mm3 Severely weakened immune system (high risk for infection) T-cell (CD4) count shows how well someone’s immune system is working References: 1. Centers for Disease Control and Prevention. 1993 revised classification system for HIV infection and expanded surveillance case definition for AIDS among adolescents and adults. MMWR, December 18, 1992; 41(RR-17). Available at: http://www.cdc.gov/mmwr/preview/mmwrhtml/00018871.htm. Accessed June 12, 2008. 2. AIDSinfo: A Service of the U.S. Department of Health and Human Services. HIV and its treatment: what you should know. February 2008. Available at: http://www.aidsinfo.nih.gov/contentfiles/HIVandItsTreatment_cbrochure_en.pdf. Accessed June 12, 2008. 23
Viral Load High >100,000 copies/mL Low to Moderate 400-100,000 copies/mL Undetectable <50 copies/mL or <20 copies/mL Viral load = the amount of HIV in a sample of blood 24
How Does HIV Therapy Work? PIs (Protease Inhibitors) Disable a protein that HIV needs to make more copies of itself. Entry and Fusion Inhibitors Work by blocking HIV from entering cells. NRTIs (Nucleoside Reverse Transcriptase Inhibitors) Fake building blocks that stop HIV from making copies of itself. Integrase Inhibitors Disable a protein that HIV uses to put its genes into the T-cells’ genes. • HIV goes through a series of stages in order to multiply • Different classes of drugs block HIV at some of these different stages NNRTIs (Non-Nucleoside Reverse Transcriptase Inhibitors) Bind to and disable a protein that HIV needs to make copies of itself. Reference: AIDSinfo: A Service of the U.S. Department of Health and Human Services. HIV and its treatment: what you should know. February 2008. Available at: http://www.aidsinfo.nih.gov/contentfiles/HIVandItsTreatment_cbrochure_en.pdf. Accessed June 12, 2008. 25
HIV replication cycle and sites of drug activity Protease New HIV particles Capsid proteins and viral RNA CD4 Receptor Viral RNA Fusion Inhibitor T-20 (Enfuvirtide, Fuzeon) Integrase Inhibitor Raltegravir (Isentress) CCR5 Antagonist Maraviroc (Celsentri) Reverse Transcription Attachment Translation Uncoating Integration Transcription • Protease Inhibitors • Indinavir (Crixivan) • Ritonavir (Norvir) • Saquinavir (Fortovase) • Nelfinavir (Viracept) • Lopinavir/ritonavir (Kaletra) • Atazanavir (Reyataz) • Fos Amprenavir (Lexiva) • Tipranavir (Aptivus) • Darunavir (Prezista) • NNRTIs • Efavirenz (Sustiva) • Delavirdine (Rescriptor) • Nevirapine (Viramune) • Etravirine (Intelense) • NRTIs • AZT (Zidovudine-Retrovir) • ddI (Didanosine-Videx) • ddC (Zalcitabine-Hivid) • d4T (Stavudine-Zerit) • 3TC (Lamivudine-Epivir) • ABC(Abacavir-Ziagen) • FTC (Emtricitabine, Emtriva) • nRTI • Tenofovir DF • (Viread) Cellular DNA Nucleus HIV Virions Reverse Transcriptase Integrase Unintegrated double stranded Viral DNA gag-pol polyprotein Integrated viral DNA Viral mRNA 6 5 1 3 4 2 Assembly and Release
What Is HAART? • HAART stands for Highly Active Antiretroviral Therapy • HAART combines drugs from different classes, slowing HIV replication down at different stages • HAART is also called combination therapy, a “cocktail,” or a “regimen” NNRTI Examples of HAART regimens: NRTI NRTI + or PI Reference: AIDSinfo: A Service of the U.S. Department of Health and Human Services. HIV and its treatment: what you should know. February 2008. Available at: http://www.aidsinfo.nih.gov/contentfiles/HIVandItsTreatment_cbrochure_en.pdf. Accessed June 12, 2008. 27
Explaining Research and Complex Topics • Understand the research findings and concepts yourself. • Determine what is relevant to your audience from the research topic. -Why is this information important to them? • Present conclusion and relevance in appropriate manner (Visuals help)
HPTN 052:Stable Heterosexual Couples Delayed ART CD4 <250 cells/mm3 Randomization 1:1 Phase 3 study Americas, African, Asian sites (n=1763 couples) Stable, healthy, sexually active, serodiscordant couples CD4 350-550 cells/mm3 Similar baseline demographic characteristics and sexual history/behavior both arms and between HIV-negative partner and HIV-positive, treatment naïve index patient Early ART CD4 350 to 550 cells/mm3 Primary Endpoints • Transmission • Virologically linked transmission events • Clinical • WHO stage 4 clinical events • Pulmonary TB • Severe bacterial infection and/or death Cohen MS, et al. N Engl J Med. 2011;365:493-505.
HPTN 052: HIV-1 Transmission Total HIV-1 Transmission Events: 39 Linked Transmissions: 28 Unlinked or TBD Transmissions: 11 • 18/28 (64%) transmissions from infected participants with CD4 >350 cells/mm3 • 23/28 (82%) transmissions in sub-Saharan Africa • 18/28 (64%) transmissions from female to male partners Immediate Arm: 1 Delayed Arm: 27 p < 0.001
HPTN 052: HIV Prevention inStable Heterosexual Couples • DSMB halts trials after a median follow-up: 1.7 years • HIV RNA <400 copies/mL • Early ART: 90% • Delayed ART: 93% • Linked HIV transmission to HIV-negative partner (n=28) • Early therapy (n=1) • 0.1 per 100 person-years • Delayed therapy (n=27) • 1.7 per 100 person-years • Early ART led to a 96% reduction of sexual transmission of HIV in serodiscordant couples Linked HIV Transmission HR: 0.04 (95% CI 0.01-0.27) (P<0.001) Delayed ART Cumulative Probability Early ART 0 1 2 3 4 5 Years Cohen MS, et al. N Engl J Med. 2011;365:493-505.
Treatment as Prevention • Treatment as Prevention • Initiation of ART resulted in a 96% reductionin HIV transmission; study halted four years early (HTPN 052 announced in May 2011)
D:A:D Study:Causes of Death Overall Death Rate 12.5 per 1000 person-years (95% CI 12.1-12.9) 29% Deaths (%) 14% 13% 11% 8% 1% 0.5% CVD Related Bacterial Infection Renal Lactic Acidosis/ Pancreatitis Liver Related Non-AIDS Cancers AIDS Related n=49,734 HIV-infected patients (1999-2011). A total of 3802 deaths over 304,695 person-years of follow-up. Weber R, et al. 19th IAC. Washington, DC, 2012. Abstract ThAB0304.
Study 103:Virologic and Immunologic Outcomes CD4 Cell Gain HIV RNA <50 Copies/mL EVG/COBI/FTC/TDF ATV/r + FTC/TDF EVG/COBI/FTC/TDF ATV/r + FTC/TDF Difference (%): 2.7 (-2.1, 7.5) Difference (%): 1.1 (-4.5, 6.7) 90% 261 87% 256 83% 82% 211 207 Patients (%) CD4 Gain (cells/mm3) 96 (n=316/315) 96 (n=353/355) 48 (n=334/321) 48 (n=353/355) Week Week DeJesus E, et al. Lancet. 2012;379:2429-2438. Rockstroh J, et al. JAIDS. 2013;62:483-486.
Resources • http://www.cdc.gov/healthliteracy/pdf/simply_put.pdf • http://www.cdc.gov/healthliteracy/ • www.ncbi.nlm.nih.gov/pmc/articles/PMC3852879/