Improving HIV Testing and Prevention in New York City Sekai Chideya, MD, MPH Bureau of HIV/AIDS Prevention and Control NYC Department of Health and Mental Hygiene Overview • Epidemiology of HIV – U.S. and NYC • HIV Testing – Recommendations and laws – Why ‘opt-out’ testing? • Assessing and reducing risk • Testing Patients – Who and how • The HIV-Positive Patient The HIV Epidemic Today United States1 • Total # HIV-Infected = 1.1 million • >56,000 new HIV infections per year • >44,000 new diagnoses in U.S. in 2007 – 1 in 5 HIV-positive individuals unaware of infection NYC2 • Total # HIV-Infected = 102,000 (1.3% population) • ~3,800 new diagnoses in 2007 • >2,000 deaths in 2007 (5 people every day) 1. Hall et al. JAMA. 2008;300:520-529 2. New York City HIV/AIDS Annual Surveillance Statistics Who is Being Diagnosed in NYC? • 80% Blacks and Latinos – Blacks have higher rates of testing* • 73% Men – 80% Men who have Sex with Men (MSM) • 30% 13-29 years old • 27% Women • 17% ≥50 years old …Basically, everyone! * Anderson, et al. Natl Ctr Health Statistics; 2005 You are here! HIV Testing Recommendations and Laws CDC Recommendations 2001 Guidelines recommend: • Offer testing in all health-care settings • Notify patients that HIV testing will be performed unless they decline (“opt-out”) • Obtain written consent – Include with general medical consent • Streamline pre-test counseling • Post-test counseling optional if negative test • Test high-risk people at least annually New York State Laws • Agrees with most, but not all, CDC recommendations – HIV testing be voluntary – Pre-test counseling streamlined – Patient signature required • Separate, written informed consent still required (not “opt-out”) • Post-test counseling still required if negative test NYC Department of Health • Follows NY State Law • Supports CDC’s Recommendations – Testing remain voluntary – Informed consent with general consent • Opt-out model • Deemphasize pre-test counseling – Provide in-person or via videos, pamphlets • Brief post-test counseling NYC DOH Testing Campaigns DOH HIV prevention campaigns Opt-Out HIV Testing Opt-Out Testing: Rationale 1. 2. 3. 4. 5. 6. Effective treatment is available Late diagnoses are common Patients don’t think they’re at risk Many doctors don’t offer testing Some patients think they’ve been tested People who know their status change their behavior 7. Most patients want routinized HIV testing 1. Effective Treatment is Available • Testing guidelines and laws drafted when no treatment existed • HIV is now a chronic disease – >20 FDA-approved antiretrovirals (ARVs) – 20-year-old HIV+ person starting ARVs today expected to live to age 69* * The Antiretroviral Therapy Cohort Collaboration. Lancet 2008; 372 2. Late Diagnoses are Common Late Diagnosis = concurrent HIV and AIDS diagnosis or AIDS diagnosis within 3 years • 45% of newly-diagnosed people in the U.S. had an AIDS diagnosis within 3 years* – NYC: ¼ of all new diagnoses also have AIDS • Late diagnoses result in – Prolonged transmission – ↑ morbidity and mortality – ↑ health care costs *CDC, MMWR 2009;58(24):661–665 Reasons for Testing: Late vs. Early Testers Supplement to HIV/AIDS Surveillance, 2000–2003 100% Late (Tested < 1 yr before AIDS dx) 80% Early (Tested >5 yrs before AIDS dx) 60% 40% 20% 0% Illness Self/partner at risk Wanted to know Routine check up Required Other 3. Patients Don’t Think They’re at Risk • Kaiser Foundation poll1: 69% people thought they were not at risk • GYN patients2: only 2% considered themselves high-risk but nearly half reported unprotected sex with more than one partner • Why? – – – – – “It’s a gay disease” “I don’t use drugs” “I’m monogamous” “I’m too old” “I feel fine” 1. Kaiser Family Foundation Survey of Americans on HIV/AIDS 2009 2. VH Coleman et al. Matern Child Health J, 2009 3. Patients Don’t Think They’re at Risk • Kaiser Foundation poll1: 69% people believed they were not at risk • Gynecology patients2: only 2% considered themselves high-risk but nearly half reported unprotected sex with more than one partner • Why? – – – – – 1. 2. “It’s a gay disease” – 40% cases heterosexual “I don’t use drugs” – Sex is #1 transmission risk “I’m monogamous” – But is their partner? “I’m too old” – 1in 6 new cases is ≥50 yrs “I feel fine” – Most people do until they develop AIDS Kaiser Family Foundation Survey of Americans on HIV/AIDS 2009 VH Coleman et al. Matern Child Health J, 2009 3. Patients Don’t Think They’re at Risk Reasons for not being tested*among those never tested You don't think you're at risk 69% Your doctor never recommended it You don't like needles or giving blood You don't know where to go to get tested You worry about confidentiality You're afraid you'll test positive 0% 27% 8% 6% 5% 2% 10% 20% 30% 40% 50% 60% Source: Kaiser Family Foundation Survey of Americans on HIV/AIDS (conducted Jan. 26–March 8, 2009) *Interviewee may choose more than one reason, so total exceeds 100% 70% 80% 4. Doctors Aren’t Offering Testing Reasons for not being tested*among those never tested You don't think you're at risk 69% Your doctor never recommended it You don't like needles or giving blood You don't know where to go to get tested You worry about confidentiality You're afraid you'll test positive 0% 27% 8% 6% 5% 2% 10% 20% 30% 40% 50% 60% Source: Kaiser Family Foundation Survey of Americans on HIV/AIDS (conducted Jan. 26–March 8, 2009) *Interviewee may choose more than one reason, so total exceeds 100% 70% 80% Why Aren’t Doctors Offering Testing? • Don’t have time – “Burdensome consent process” top reason* • “Patient looks like my mom, brother, etc.” • Counter-transference – Patient is difficult, non-adherent • Patient might be offended • Discomfort discussing it *Burke, et al., AIDS 2007, 21 5. Some Patients Think They’ve Already Been Tested Many patients assume they were tested as part of routine workup • Healthcare providers often say they’ve checked for “everything” – What does “everything” mean? • 23% of hospitalized patients incorrectly assumed that HIV was included among their blood tests* * McAdam, et al. International J of STD & AIDS 1997; 8 6. People Who Know They Have HIV Change Their Behavior ~1/4 Unaware of Infection Account for: ~2/3 of New Infections ~3/4 Aware of Infection ~1/3 of New Infections People Living with HIV/AIDS: 1,039,000-1,185000 Marks et al., AIDS, 2006 New Sexual Infections Each Year: ~32,000 7. Most Patients Want HIV Testing to be Routine Removing Separate Consent Increases Testing Mean Rate of HIV Tests, San Francisco Dept. Health Zetola, N. M. et al. JAMA 2007 Your Role as a Doctor Until opt-out HIV testing adopted: • • • • Assess risks – “every patient, every time” Counsel on risk reduction Offer testing Facilitate Prevention with Positives Patients Don’t Self-Disclose Risks The ideal patient encounter… “Hi Doctor. Just to let you know, I inject drugs, had three STIs last year, and my partner is sleeping with other people.” This NEVER happens! Assess, Don’t Assume You can’t treat a problem if you don’t know it exists Only 35% of primary care physicians routinely ask patients about sexual behaviors* Tips for taking a sexual history: • Develop a routine – Utilize with all patients • Avoid moral or religious judgments • Clarify misinformation, dispel myths, and provide factual information * McCance, et al. Am J Prev Med 1991;7 Assessing Sexual Behavior: Sample Questions* • Are you currently sexually active? Have you ever been? • Are your partners men, women, or both? • How many partners have you had in the past 6 months? • What method of contraception do you use? • Do you or your partner(s) use any particular devices or substances (e.g., crystal meth) during sex? Nusbaum. Am Fam Physician 2002; 66 • Do you have, or have you ever had, any risk factors for HIV? (List them out loud) • Have you ever had any STIs? • Have you ever been tested for HIV? Would you like to be? • What do you do to protect yourself from getting HIV? Risk Reduction Counseling You know they’re at risk…now what? • Behavior change is a gradual process, not “all or nothing” – Ex., few smokers quit “cold turkey” – have to decrease # cigarettes, use NRT, etc. • Emphasize that your primary concern is their health and that they are in control • Clearly outline what is putting them at risk, then ask if they are willing to make some changes to be safer – Don’t pressure them if not ready/willing Risk Reduction Counseling (2) For willing patients: • Be nonjudgmental but avoid downplaying risks • Brainstorm with patient about acceptable alternatives – “What if you always carried a condom?” – “On the first of the month, buy syringes from Duane Reade instead of sharing used ones” • Refer, refer, refer: case management, psychiatry, etc. Don’t go it alone • Draft an informal contract on a Rx pad **Even if patients don’t want to discuss their sexual history, offer them HIV testing Offering HIV Testing Offering HIV Testing: Who • Everyone establishing care • Everyone getting a physical • High-risk patients (based on assessment) – – – – – – Unprotected sex Anyone wanting a STI or pregnancy test Drug or alcohol dependent “Frequent flyers” with recurrent illnesses Mental health issues, if competent Symptoms consistent with AIDS Offering HIV Testing: How 1. Introduce topic 2. Provide brief pre-test counseling (faceto-face, video, or written) 3. Answer any questions 4. Get consent 5. Provide post-test counseling Introduce the topic Reassure patients that you offer it to everyone. • “I’d like to include an HIV test on your lab panel because I think it’s important that everyone know his/her HIV status.” • “I recommend HIV testing to every (new) patient getting a physical, no matter his/her age….” • “HIV is preventable and treatable, just like high blood pressure or diabetes. So it’s important to check for it, just like those other diseases.” Obtaining Consent 1. Answer questions - expertise not needed 2. Obtain consent • • • • Minimal Requirements Present HIV Consent Form Part A to patient Patient signs Part B Perform test Provide “Information on Negative HIV Test Result” to those who test negative www.health.state.ny.us/diseases/aids/regulations/2005_guidance/negativetestresults.htm The HIV-Positive Patient So, what do you do if patient is positive? 1. 2. 3. 4. 1st, confirm it with Western Blot Reassure that not a death sentence Complete Provider Report Form (PRF) Facilitate: – – – – – Partner Notification (PN) Counseling on how to stay healthy and safe Linkage to care Case management Pharmacotherapy, if indicated The HIV-Positive Patient So, what do you do if patient is positive? 1. 2. 3. 4. 1st, confirm it with Western Blot Reassure that not a death sentence Complete Provider Report Form (PRF) Facilitate: – – “PWP” – – – Partner Notification (PN) Counseling on how to stay healthy and safe Linkage to care Case management Pharmacotherapy, if indicated Prevention With Positives (PWP) • PWP: Any activity that reduces the likelihood of HIV transmission to others • PWP aims to prevent the ~1/3 of all new infections due to transmission from known HIV-positive people – NYC: # new cases from 3,800/yr 2,500/yr Examples of PWP • • • • • • • • Making people aware of their HIV status Facilitating partner notification Keeping viral loads low Practicing safer sex Prevention of mother-to-child transmission Syringe exchange for HIV+ drug users Housing support Many other activities… Making PWP Successful • Ask, ask, ask: regularly reassess behavior – Come up with a few responses to convince people to talk freely • Frame PWP in a life-affirming way that emphasizes their safety – “Using a condom will give you peace of mind and will also protect you from STIs that could make your HIV worse.” – “Not sharing needles makes it less likely you’ll get Hepatitis C” • Collaborate with social service providers PWP at the Facility-Level • Prioritize cultural competency regarding ethnicity, language, religion, etc. – Have low-literacy materials in Spanish, Russian, Creóle, French, etc. in your waiting rooms and offices • Put PWP-related questions on intake and examination forms • Make PWP a quality improvement (QI) criteria You CAN make a difference. Remember…“Every Client, Every Visit” Thank you! Partner Notification Options 1. Provider/DOHMH-assisted 2. Contract notification with patient 3. Anonymous notification D. Reporting partners to NYC DOHMH: The Law: Amended PHL Article 21 “Control of Acute Communicable Diseases” – NYS law: every provider is responsible for completing a Provider Report Form (PRF) for the purpose of reporting: • Each new HIV diagnosis • All known partners – At ANY time a partner becomes known Provider/DOHMH Facilitated PN • Elicit the names of partners from your patients • Conduct a domestic violence (DV) screen • Report partners to the health department: – Public Health Law requirement A. Important partner information 1. Identifying info: • First/last name, alias, date of birth, estimated age, gender, race/ethnicity 2. Locating information: • Home address, place of employment, phone # (home, work, cellular), email 3. Physical description • Hair, complexion, other distinguishing characteristic (piercing, tattoos, etc) 4. Any other information that your patient may provide • HIV status of partner, pregnant, martial status B. Conduct a DV Screen • For each partner elicited, providers are required, by law: – To complete a domestic violence (DV) screen – Assess the potential risk of DV to the patient • If a risk for DV is identified, PN should be deferred – Refer patient to a DV agency B. DV Screening questions • Do you ever feel unsafe at home? • Are you in a relationship in which you have been physically hurt or felt threatened? • Have you ever felt afraid of your partner or ex-partner? • Has your partner or ex-partner currently or ever: – Pushed, grabbed, slapped, choked or kicked you? – Forced you to have sex or made you do sexual things you didn't want to? – Threatened to hurt you, your children or someone close to you? – Stalked, followed or monitored you? Contract PN C. Physician’s legal status for patients who refuse partner notification NYS Public Health Law 63.8 Contact [partner] notification Provider [physician] can disclose “without the protected person’s [index] consent to: - A contact or - A public health officer for the purpose of notifying a contact” C. Partner notification- cont’d • The following must occur: – The provider believes the contact is at risk of infection – The provider does not believe the patient will notify the partner – The provider has informed the patient that s/he will notify the partner – DV screen is done and no DV risk identified • If provider believes risk of transmission outweighs risk of DV, provider can decide to proceed but not required D. Partner Report Form (PRF) 1. Know where the PRFs are located 2. For prevalent cases in which a partner is identified, • Complete the PRF continuation form • Focuses on partner information Anonymous PN inSPOT New York City Assisted Partner Notification via Internet www.inspot.org What Does the FSU Do? • Helps HIV infected patients and their providers notify sex and needle-sharing partners of their exposure • Helps notified partners get tested for HIV, including through field-testing • Helps HIV-positive patients and partners to link and/or return to medical care, if necessary Where is FSU based? • FSU staff are based in 10 major hospitals/clinics in areas with high HIV prevalence and mortality – Bronx: Bronx Lebanon, Lincoln, Montefiore – Brooklyn: Brookdale, Woodhull, Kings County Hospital – Manhattan: Harlem Hospital, NY Presbyterian, St. Vincent’s, St. Luke’s Roosevelt – Prison system: Riker’s Cases reported to FSU staff • Direct call from hospital staff – Providers, counselors, nurses, etc • Montefiore (Weiler, Moses, & Children’s): – Crystal Moore 646-772-4996 • Weekly report of all western blot positive from the hospital lab • Report of all western blot cases from the HIV/AIDS Registry Person tests HIV positive FSU Workflow FSU receives referral*: Clinical staff, onsite lab, or HARS *Review chart/consult with provider to ensure post test counseled and appropriate for initiation. PHA offers HIV+ face-to-face interview Case investigation interview and partner elicitation Linkage to Care: Select PCP if needed Prevention with Positives Exposure notification by FSU or CNAP Encourage patient to Attend 1st appointment Persons with unknown Status offered testing Newly diagnosed linked to medical care and other services Negatives offered risk reduction strategies Persons HIV+ offered PWP and linkage to care Which patients do we interview? 1. Newly diagnosed (including AHI) – Also, FSU assist with returning patients who test HIV positive but failed to return for their results 2. Patients with unresolved partner issues (no matter duration of HIV infection) including: – Perinatally-infected and known to be sexually active or injecting drugs – Pregnant – Newly diagnosed STD – Past or present sex or needle-sharing partners who may be unaware of their possible exposure A. What to emphasize regarding the confidentiality law? • It is against the law for the Health Department to reveal the name of anyone with HIV infection. – Personal fines/penalties of up to $5,000 for each revealed name – A staff member could lose his or her job • The NYC Health Department cannot give the name of an HIV infected person to any local, state or federal agency, including any immigration services agency How can you refer a patient to the FSU? • Call your FSU PHA: – Crystal Moore 646-772-4996 • Call the FSU call-line: – (212) 442-6577 – Representatives are available Monday-Friday, 8:30 a.m.–4:30 p.m. – At all other times, please leave a message Previous CDC Recommendations Adults and Adolescents • Routinely recommend HIV screening in acute-care hospital settings with HIV prevalence >1% (NYC’s = 1.3%) • Targeted testing based on risk assessment in clinical settings with lower HIV prevalence • Based on previous recommendations, NYC should already be routinely screening for HIV in medical settings