Missed Opportunities for Preventing HIV Transmission: A Study of Ryan White Clinics Steve Morin, Ph.D. AIDS Policy Research Center AIDS Research Institute University of California, San Francisco Funded by the Health Resources and Services Administration

Conclusions The concept of prevention for positives is not well understood in clinical settings Prevention services are not currently routine at most clinics Individuals concerned about possibly transmitting HIV to others can be identified

Discussions on reducing risk of transmission tend to be general rather than specific Clinics varied in the extent to which HIV prevention was seen as part of primary care Prevention services varied from directives on condom use to motivational counseling Conclusions

Challenge “Our agency tried to integrate our prevention and our client services departments, and it was very difficult. Prevention was telling people ‘this is horrible, you don’t want to get it’ and the Client Services was going ‘Oh, it’s OK. It’s alright. You know, it’s not so bad.’”

Aim 1: Prevention Practices  Aim: To assess the current practices of providers regarding prevention for HIV- infected patients in Ryan White funded clinics  Method: Interviews (N=618) with patients exiting regular HIV primary care visits  Sample: 16 Ryan White funded clinics in 9 states -- mix of high, medium & low volume providers

Research Sites

Demographics CARE Act Survey Clients Participants Male67%73% Female33%25% Race/Ethnicity African American47%51% White31%25% Hispanic/Latino21%19% Native American 1% 1% API 1% 1% Other n/a 3%

Risk of Transmitting 21% of those who have been sexually active (n=403) were worried that they “might have given HIV to someone else” (n=83) in the last 6 months.

Prevention Practices (At that day’s visit) 25%Reported someone at the clinic spoke to them about “safer sex and how you can prevent giving HIV to someone else.” 6%Discussed specific sexual activities 7% Discussed disclosure to partners 9%Received reading material 6%Tested for STD that day

Percent Receiving Specific HIV Prevention Services 6% 23% 47% 7% 23% 52% 6% 31% 56%

Clinics (Over last six months) The clinics differed in the frequency of prevention counseling (p<.01) Sexually active patients reported more prevention counseling (58%) than those inactive (44%) -- (p<.01) Those expressing concern over transmitting to others reported more counseling (71%) than those who did not (54%) -- (p<.01)

HIV Prevention v. Other Counseling 25% 51% 42% 68% 37% 59%

Client Characteristics (Over last six months) Those seen at the clinic less than one year (68%) were more likely to report prevention services than those seen longer than a year (48%) -- (p<.001) Those with CD4 counts less than 200 were more likely to report prevention services (62%) than those with higher CD4 counts (50%) -- (p<.02)

Prevention Counseling (over last six months) Group Percent reporting Women63% Men50% African American61% Hispanic53% White40% Heterosexual59% Gay50%

Aim 2: Qualitative Findings  Aim: To assess current practices and barriers to providing prevention services for HIV- infected patients in clinical settings  Method: Rapid Assessment Approach  Ethnographic observations  Review of secondary data  In-depth qualitative interviews  1 clinic administrator (n=16)  2 medical providers (n=32)  2 providers of support services (n=32)

Typology of Clinics (Approach to prevention) 1) Integral part of clinic’s philosophy of health care. Procedures are clearly established. 2) Not integrated into the clinic’s procedures. Individual providers follow their own prevention strategies. 3) Not mentioned by providers as part of their role or as part of the clinic’s philosophy of care.

Clinic Intervention Models Provider-Based: Primary care providers counsel on risk assessment and reduction Specialist: Health educators or specialists provide counseling Multidisciplinary: Whole clinic team is involved, each with a different perspective

Medical Providers’ Perspective “Everybody we see has HIV already. Prevention isn’t our business in a way.” “Basically, my responsibility is to the individual. But, you know…. there is a bigger public health responsibility…. I feel a responsibility, but I know that it is limited.”

Medical Provider Views Concept of “prevention with positives” is not well defined Role -- primary care v. public health? Responsibility -- who provides the service? Fatalism -- belief that it wouldn't work Implication: Clinics need to develop a consistent understanding and message

Message No consistent message Viewed current messages as “ineffective” “Use Condoms” -- to protect others “Protect Yourself” -- reinfection, STDs Moral -- being good v. being bad Medical advice v. motivational counseling

Aim 3: Patient Perceptions Aim: To assess perceptions of patients about primary prevention needs and services Method: In-depth interviews with 4 patients in each of the 16 clinics (n= 64)

Patients’ Perspectives “I’m already positive. So, I know I am not to infect anybody else. So, I don’t see why I need to know about it (prevention).” “Like I say, I’ve been coming here for 10 years. I don’t have any more questions.”

Patient Needs & Wants (Patients want …) To “Not transmit HIV to others” More understanding of complexity Information (re-infection) Support (learn how others cope) Leadership role -- prevention & reducing stigma (speaking to youth)

Conclusions The concept of prevention for positives is not well understood in clinical settings Prevention services are not currently routine at most clinics Individuals concerned about possibly transmitting HIV to others can be identified

Discussions on reducing risk of transmission tend to be general rather than specific Clinics varied in the extent to which HIV prevention was seen as part of primary care Prevention services varied from directives on condom use to motivational counseling Conclusions

Positive Prevention “Risky behavior by positive people is not the norm. Most of us take extraordinary steps to make sure that we are not infecting our partners, and we are doing so without a whole lot of support. There aren’t big campaigns supporting us staying safe in our relationships. We’re doing it of our own accord.” -- Terje Anderson, NAPWA

Recommendations (Clinics need to …) Reach a common understanding of “prevention for positives” Assess risk beyond intake Decide on an approach -- several models seem promising Involve people living with HIV in the development and evaluation of models

Ryan White Prevention Project Team UCSF AIDS Research Institute Stephen F. Morin, Margaret Chesney, James O. Kahn, Andre Maiorana, Marisa McLaughlin, Janet Myers, Wayne Steward Anne Richards, Karen Vernon, Nicolas Sheon, Kimberly Koester Sheri Storey, Andrew Herring, Cecilie Rowitz, Angela Allen, Tanya Stallworth, and Maricarmen Arjona Health Resources and Services Administration Katherine Marconi, Faye Malitz, Pam Kowalski Center for Disease Control and Prevention Ken Hunt, Dogan Eroglu, Sam Dooley, Kathy Rauch