Small County Perspectives on the California State Office of AIDS’ PrEP Assistance Program

The California State Office of AIDS is launching a program to offer financial assistance to eligible persons currently using or seeking PrEP. The PrEP Assistance Program or “PrEP-AP,” will supplement the Gilead Assistance Program, which covers up to $4,800 annual costs of Truvada^®, by assisting clients with the costs of laboratory and provider visits associated with PrEP initiation and retention. The first phase of the project will launch in early 2018, focusing on enrollment of eligible clients who are uninsured. The second phase will expand program eligibility to clients who have insurance but who would benefit from additional financial coverage for PrEP-related services. The program will be modeled after the AIDS Drug Assistance Program (ADAP), which provides financial coverage of HIV treatment.

In the summer of 2017, the AIDS Policy Research Center conducted a study to understand the perspectives of frontline healthcare workers and generate recommendations for the state’s implementation of the PrEP assistance program. We conducted interviews with ADAP enrollment workers and PrEP navigators in Alameda, Fresno, Los Angeles, San Diego, and San Francisco Counties. The report can be found at: http://www.chprc.org/wp-content/uploads/2017/09/PrEP-Benefits-Report_September_2017_FINAL.pdf

Workforce Issue: Who is best suited to handle PrEP-AP enrollment? ADAP enrollment workers, benefits counselors, PrEP navigators, or some combination of these roles may be enlisted to serve as PrEP-AP enrollment workers. We reported in our initial publication that perspectives about who is best suited to perform the enrollment work varied across different types of clinical settings. In clinics with high volumes of PrEP clients and defined roles for PrEP navigation, PrEP navigators were identified as well suited to enroll clients into PrEP-AP as a supplement to their current job duties. In settings that had yet to implement PrEP services (i.e., HIV clinics), ADAP enrollment workers were identified as likely candidates to take on this work, provided that they receive the appropriate training. These findings and more are discussed in the aforementioned report.

In a follow-up study, we explored workforce issues related to PrEP implementation in less populated, smaller California counties. Most of our informants in the prior study, particularly those in San Francisco and Los Angeles had substantial access to PrEP resources available through grants e.g., Project Pride. We asked informants from smaller counties to describe the potential benefits and the potential challenges with PrEP-AP in their regions.

Our findings presented here draw from interviews conducted with PrEP stakeholders in the counties highlighted in the box to the right. For more information about the study methodology, please see the Methods Note at the end of the report.

 County Sample (n=7) 

• Contra Costa 
• Fresno 
• Riverside 
• Sacramento 
• San Luis Obispo 
• San Mateo 
• Orange 

Before delving into the perspectives on PrEP-AP, it is helpful to understand the challenges that participants currently experience with PrEP navigation in their counties. Some of the principal challenges included limited resources and a scarcity of PrEP providers.

Limited resources

Informants working in small counties are contending with a set of limited resources — financial resources, human resources, and medical resources – for PrEP. Unlike our informants for the previous study, none of the informants in this small county study were employed exclusively or even formally as PrEP navigators. Each took on the work of PrEP navigation because they felt it was critical; however, they highlighted the limited time and resources available to focus on PrEP in light of other job demands. Participants frequently expressed a need for additional staffing and resources. Hiring individuals to specialize in PrEP navigation would allow the counties to conduct outreach and PrEP education to some of the most vulnerable clients. However, funding constraints made hiring new staff difficult.

“There seems to be this inequity of funding… The rural areas are not getting any money. So, if you have money and funds to throw at it, then you can hire those PrEP navigators. You can hire those people to actually go out to the bars at night and engage people. Without that outreach and that early intervention, there’s not a whole lot you can do. You have to wait for them to come to you, and that’s not what we need. We need people pounding the pavement out there talking about PrEP.”

The issue of inequity in funding allocation for PrEP across the state was a common theme in the interviews. A different participant said:

“All the funding that San Francisco and L.A. has, it’s totally different. We were talking about that in the last PrEP summit in San Francisco in December… People from other states, they say, “Oh, California, they have money.” And I’m like, “No. San Francisco has money. L.A. has money. But the rest of us, nothing.”

Scarcity of PrEP providers

In many cases, informants expressed that there were relatively few providers who were comfortable prescribing PrEP in their region. Potential PrEP clients often had to travel great distances and/or experience long wait times to see a PrEP provider. In such counties, the informal PrEP navigators often spent a lot of time conducting outreach and educational sessions with providers in the area.

One informant situated within an STD clinic highlighted the issues with the clinic’s referral process for PrEP clients. Some clients with private insurance seek out services at the STD clinic in order to avoid anticipated stigma from their provider. Despite this stigma concern, clients with private insurance who are interested in PrEP are referred back to their primary care provider by the STD clinic. For these potential PrEP clients, the lack of PrEP providers in the private sector negatively impacts their access to PrEP.

In the absence of a formalized PrEP navigator workforce, those serving as informal navigators had to facilitate PrEP education for the provider community. In order to serve people seeking PrEP, they first needed to identify PrEP friendly providers. They also leveraged the expertise of more experienced PrEP navigators via the PrEP navigation workforce community nationally and at the regional level.

Directing effort to building a PrEP provider network

Counties that do not have official PrEP programs are doing a lot of work to recruit amenable providers. One strategy is building up an informal provider network of PCPs competent with PrEP. A participant described identifying a provider at each clinic to be a “fire starter,” someone comfortable with prescribing PrEP or eager to learn. In another county, a participant and his team conduct grand rounds on PrEP screening and protocol at local public health clinics.

Sharing of information across networks of PrEP navigators

Participants often commented on how they appreciated the support from navigators in other counties and states to share guidance and answer questions. We heard this sentiment expressed in other counties, but the availability of these networks appeared particularly meaningful for individuals in smaller counties, who may not have access to such expertise locally or at their own agencies.

“It feels very much like the PrEP community just nationwide has been really open about sharing materials and making sure that, you know, they all have the same goal in mind of getting the most people on PrEP, so it’s been really nice.”

Smaller counties are devising their own local strategies to improve access to PrEP, including efficient communication via the phone, using “line lists” to conduct outreach, and tailoring the PrEP navigation model to fit the clinic’s capacity and staffing structure, such as by utilizing public health nurses with sensitivity to the community in need of PrEP.

Communicating remotely with existing and prospective PrEP clients

One participant described success conducting most of her PrEP navigation work via telephone. Using “line lists” (see strategy box below), they call individuals who have tested positive for reportable STIs. The call includes a wellness check, risk reduction counseling, PrEP education, and, if desired, PrEP navigation. The participant who described this kind of work drew on her in-depth knowledge of insurance status to direct PrEP seekers to options for care and coverage. They noted that this strategy worked well for people insured through a low cost-sharing plan on the part of the client – meaning that they would have lower out-of- pocket spending requirements. As heard from other informants, they too noted that linkage to PrEP was difficult for people with Covered California Bronze insurance plans (which, of the Covered California plans, has the highest cost-sharing burden on the client), clients with no insurance, or who are undocumented. Nevertheless, in counties with limited resources for PrEP navigation, this kind of phone-based approach to PrEP education and benefits counseling seems promising.

Spreading awareness about PrEP among potential clients

Counties also described novel ways of recruiting new PrEP clients. In one county, a participant designed PrEP posters to put up in every clinic, urging people who may be interested to bring up PrEP with their provider during the appointment. In another county, a participant targeted college campuses, connecting with campus health centers to put on PrEP educational events with a free HIV testing component.

Two informants use cold calls from “line lists” to conduct initial consults with clients. Given that these reach clients who may not know about PrEP. individuals on the line lists have tested positive for a reportable STI, they may be potential PrEP candidates. During the course of the call, informants discuss harm reduction methods and PrEP education. Widespread unfamiliarity with PrEP, particularly in rural counties, enhances the potential usefulness of this strategy for reaching people with a high risk of acquiring HIV. The informants refer people interested in PrEP to self- enroll in the Gilead Assistance Program. One of the two informants is able to offer people with public insurance or no insurance an appointment with a PrEP provider at the county STD clinic.

One recruitment strategy: “Line list” calling

Some counties have tried to recruit potential PrEP candidates by cold calling individuals who have tested positive for reportable STIs. Successful implementation of such an approach requires time and resources to support clients who are interested in PrEP after receiving these calls. This is a strategy that counties with robust PrEP programs could consider using as well to reach clients who may not know about PrEP.

Tailoring the PrEP navigation model to fit the agency’s capacity

We heard several examples, not only in the small county interviews, of how organizations had configured the role of PrEP navigation to become a new position or an addition to existing positions and services. Adapting workflows to partner with other organizations was especially important in smaller counties, where resources for PrEP may be more limited. For example, one clinic discovered, paradoxically, that PrEP navigation for clients without insurance was simpler than navigation for those with insurance because those with insurance often required help with coordination across multiple entities. Initially, the clinic assisted PrEP clients with benefits navigation regardless of insurance status, but as the caseload of PrEP clients grew, the clinic needed to readjust the division of labor. They were able to refer clients with insurance to another agency that could assist with the benefits navigation processes.

The same clinic also found it helpful to have public health nurses provide case management services for PrEP clients. When asked how they have been able to retain such a large cohort of PrEP clients in their clinic, the informant explained that they were able to offer clients a “one-stop shop” of services and that the nurses were able to leverage their clinical backgrounds when consulting with clients.

“I think we have the benefit of having public health nurses doing all the education and the follow up for our PrEP patients, and I think just having, like, the nursing role of having the knowledge and expertise of, you know, medication, and side effects, and just, like, what labs we need to run, and how to follow up with those labs, and how to give lab results. It makes it so it’s just, like, one person doing most of the follow up other than the actual exam. So, I think patients really appreciate that, you know, kind of a one stop shop. They don’t have to go to a lab to get their labs done. They don’t have to go to a doctor to get their results. They can come and see the nurse.”

In featuring this example, we do not intend to suggest that PrEP navigators must be medical providers in order to serve clients effectively. Outreach workers or benefits counselors who have received training in HIV prevention can provide education related to PrEP as part of their PrEP navigation duties. However, in settings that do not have a specific outreach worker or navigator, nurses who see PrEP clients may be able to assist with educational and other aspects of PrEP navigation.

Participants were hopeful about the program’s potential to alleviate the financial barriers that clients can face when trying to initiate PrEP. Some participants also felt that the rollout of PrEP-AP could provide a window of opportunity for their counties or agencies to become more involved in PrEP implementation.

“I think we could make a stronger argument for allocation of resources if we have a process that we know is going to get people enrolled in a quick way to PrEP, and it feels like PrEP-AP might be a mechanism to do that, so I’m excited about that.”

While participants generally were enthusiastic about the potential for the PrEP-AP to expand access to PrEP services, some participants raised concerns about how their agencies would be able to fund the staff needed to perform the enrollment work.

“One of my barriers with this program is, I’d like to know, if it requires any more manpower to make this happen, I’m in trouble ’cause I don’t have it. It has to be as simple as the provider eRxing and then it’s done, and then the patient gets it. Or, like the Gilead Assistance Program, you fill out the [form], you call the telephone number. You get the information. You fax it in. Done.”

Some informants also raised concerns that smaller counties may be overlooked when it came to funding allocation and approaching potential enrollment sites for PrEP-AP.

“I feel like our counties are forgotten sometimes. It’s like, oh, they’ll figure it out, but we’re not getting the big grants and the generous donations from philanthropic organizations or foundations. Really it’s just we’re following the lead. Sometimes it’s years before we get information, or really are up to the standards that we see in San Francisco, especially.”

Participants raised concerns that some individuals seeking PrEP would still face financial barriers if program eligibility were tied to income level.

“I think sometimes we focus on, when we talk about individuals who can’t gain access, we’re talking about the individual who’s not insured, per se, or having a certain situation financially. But that person there [referencing an example client] was well in a position but still couldn’t afford it because of the high cost. I think it would have cost them like $1,400 a month…. ADAP for PrEP is not going to help that person. We still have loopholes.”

Consider an option for client self-enrollment. We proposed this recommendation in our earlier report, but it is potentially even more important for smaller counties that may not have a lot of resources available to develop a PrEP navigation workforce.. Supporting clients with self-enrollment could expand access to PrEP- AP, expedite the enrollment process, and free up time for PrEP navigators to assist with more difficult cases. In the quote below, one participant describes the importance of and a potential system for self-enrollment:

“If I were making a suggestion, since they only have $1 million for this first year, I would put a lot of those resources into creating a platform or a system that is really user-friendly, considering they’re like, who’s going to enroll all these people? Make it easy enough that they could self-enroll with the proper educational support, whether that be a quick how-to tutorial via YouTube or pop-up What Is This tab, kind of similar to TurboTax, where they guide you through what could be really complicated federal or state information. Just take it step by step, and do it in layman’s terms. Make it so you could take a picture of your ID with your residence proof or explain how to fill out certain paperwork. Put in a lot of resources up front to make it easier for people to sign up themselves.”

Design the enrollment portal so that it is as easy to use as possible. As one informant noted, the ADAP system could be relatively complicated due to amount of paperwork required to confirm and document eligibility. When describing the ADAP enrollment process and if ADAP enrollment workers would be able to enroll clients in PrEP-DAP at his agency, the participant explained:

“Even though it seems like a pretty simple process in terms of get all these forms together and send it over, it takes a lot longer than what I think is necessary. That’s my opinion. I think it’s more cumbersome than it should be. So, if the question is would [ADAP enrollment workers] have the capacity to also enroll PrEP patients, I think possibly not unless there was a more streamlined way to do that.”

Monitor the number of people who attempt to enroll in PrEP-AP but are ineligible due to high salaries. Participants raised concerns that some individuals seeking PrEP would still face prohibitive costs despite the financial support from Gilead and PrEP-AP. Participants worried that clients with high deductible insurance plans were particularly at risk for falling through the cracks. It would be useful to monitor the number of persons that are considered ineligible because of higher earnings.

Consider allowing clients to access PrEP-AP enrollment support across county lines. The potential for providing PrEP navigation services remotely, including PrEP-AP enrollment, could be especially useful in counties that are under-resourced or that serve clients across a wide geographical area. Of course, clients would still need to find a provider to prescribe PrEP. However, the availability of remote access to PrEP navigation services and PrEP-AP enrollment could help to minimize some of the barriers associated with the initiation of PrEP.

These interviews were conducted as part of a study to understand the perspectives of frontline workers prior to implementation of the State Office of AIDS’ PrEP Assistance Program. This particular report focused on the unique considerations for the rollout of the program in smaller counties across the state. Overall, there was a congruence of themes and recommendations in both sets of interviews. In this report, we highlighted a few additions and expanded upon previous findings that seemed even more pertinent to smaller counties. For example, some informants from the well-resourced counties also expressed concerns about workload and staffing for PrEP-AP. These concerns were not necessarily unique to smaller counties, but may be more pronounced in counties with fewer resources dedicated to PrEP.

There are a few limitations worth noting about this study. These perspectives may not be representative of all small counties in California. Additionally, findings may not be generalizable for each of the counties represented. Further research is needed to assess fully the statewide implementation of PrEP-AP.

Methods Note

We purposefully sampled informants working in settings that offered a countywide perspective and with informal or formal experience with PrEP navigation. All informants were involved with PrEP navigation, though to varying extents depending on their roles in the agencies that they represented. Our sample included 7 counties (Contra Costa, Fresno, Riverside, Sacramento, San Luis Obispo, San Mateo, and Orange) and a range of workplace settings (i.e. public STI clinics, community health centers, HIV clinics, and health departments).

We identified our key informants through our research team’s formal knowledge of the PrEP community. Beginning in September 2017, we approached 8 potential informants of whom 7 agreed to be interviewed and 1 did not respond to our request for an interview. We conducted telephone interviews with the 7 key informants from September 2017 through December 2017. Interviews lasted an average of 45 minutes and explored topics such as daily work routine, current PrEP capacity, hearsay about PrEP-AP, and recommendations for PrEP-AP. The interviews were audio recorded, transcribed, and coded. We conducted a thematic analysis of the data.