Californian Consumer Attitudes on Accessing PrEP/PEP without a Prescription via a Community Pharmacy

The California Legislature passed Senate Bill 159 (SB159) in 2019 allowing pharmacists to initiate and furnish HIV pre-exposure prophylaxis (PrEP) and post-exposure prophylaxis (PEP) to eligible patients without a prescription. The law goes into effect on July 1, 2020. In order to participate, a pharmacist must undergo a California State Board of Pharmacy approved training program. Laws following similar stipulations are in place for California pharmacists to furnish hormonal contraceptives or naloxone hydrochloride. Once trained, the law permits a pharmacist to furnish at least a 30-day supply and up to a 60-day supply of PrEP to eligible individuals no more than once every 2 years, with an expectation that the pharmacist would notify the patient’s primary care provider or provide a list of providers to the patient who can manage long-term PrEP care. Coverage for PEP includes a complete course of medication (typically 28-days), with no limitation on the number of times that PEP can be furnished.

We previously conducted a qualitative study with pharmacists and medical providers in California to understand the attitudes towards the proposed legislation.¹ Building on this research, we designed a study to explore the attitudes of potential consumers of pharmacist initiated and furnished PrEP or PEP. Our plans included conducting focus group discussions and in-depth interviews with a sample of potential consumers in the three Northern California HIV hotspot counties: San Francisco, Alameda and Sacramento. We intended to conduct 2-3 focus group discussions in each county. We initiated data collection in November 2019 and in March 2020, our efforts were disrupted by the COVID-19 outbreak. At that time, data collection activities were limited to in-depth interviews conducted via telephone.

At the time of this report, we conducted 6 individual interviews and one focus group discussion with 6 additional participants for a total of 12 unique participants in the Bay Area. We recruited participants from prior PrEP-focused studies and through advertisement on Craigslist. To be eligible for an interview, participants had to be currently taking or interested in PrEP and 18 years or older. This report presents a preliminary summary of the attitudes and recommendations among potential consumers of PrEP/PEP without a prescription via a community pharmacy.

Summary

Overall, participants perceived the law as a step in the right direction in terms of expanding access to PrEP and PEP, but also outlined significant limitations. Specifically, questions and concerns arose regarding the limitations associated with the supply of PrEP (no more than 60-day supply no more than once every two years). Additionally, while participants generally felt comfortable with the idea of approaching pharmacists to request PrEP or PEP, they also voiced concerns about privacy. Specific benefits, concerns, and recommendations discussed by participants are outlined in the sections below. Additional supporting quotes are available in Appendix 2.

Benefits

• Creates direct access to PrEP and PEP. Access to PEP could help people who are in an acute crisis situation.
• Saves time and money since you would not need to see the doctor first and pay for that appointment.
• May reduce perceived barriers to starting PrEP, such as the process of approaching a medical provider. One participant who had been interested in PrEP but hesitant to start a prescription likened the limited dosage to a “trial period” for PrEP and was intrigued by this idea.
• Who would benefit the most? Participants felt that the program would be especially beneficial for individuals who were either temporarily visiting California or new to a city and without an established a relationship to a primary care provider (PCP), as well as those who were uncomfortable asking their PCP for PrEP/PEP, or who did not have insurance or a regular provider.
  • For example, the participant quoted below had recently immigrated to the US with a limited supply of PrEP and would have benefited from direct pharmacy access while trying to figure out how to maintain his supply of medication.

“So, the beauty of this is really cutting out the doctor middleman and the cost of the office visit, which is always huge.” (Focus group participant #4, Latina female, age 47)

“I came out here with no job. So, no health insurance… in Australia you can get a three-month supply at once. So, I came out with three month’s supply. And what happened? I didn’t know how to access PrEP here. And I was running out, and running low, and still hadn’t got a job yet. And booked an appointment at the San Francisco AIDS Clinic, but couldn’t get in for three weeks. And then ordered some PrEP online from like India. And so, it was super stressful. And eventually I got on like a pharmacy dispensed PrEP from my doctor. But that whole experience of like what do I do? How do I access this and not pay like $1,200 or whatever the rack price is for it? Yeah, it was pretty stressful.”
…
“In the scenario when I first came out here and didn’t know how to access it, had there been information online about like you can access PrEP directly at a pharmacist for 60 days. Like that would’ve been super helpful.” (Interview #3, white male, age 31)

Concerns

• The issue of privacy: Seeking PrEP or PEP is considered a private affair and privacy is not something pharmacies typically offer. Participants commonly expressed concerns about being overheard by other customers and staff – both when asking for the medication and when staff are having conversations amongst each other behind the counter (e.g., “Is the Truvada ready?”). Privacy concerns may be exacerbated in smaller, more insular communities.
  • Although a few participants said that they would have no concerns if the pharmacist or other staff knew what kind of medication they were picking up, they recognized that there was still significant stigma, even in pharmacies and neighborhoods that are considered HIV-friendly.
• Referral networks and limitation of the 60-day supply of PrEP. Most participants had questions and concerns about the supply limitation related to PrEP. Generally, participants agreed that the 60-day supply of PrEP may be sufficient in places like San Francisco where there are a number of PrEP providers, but it may not be enough time for people to establish PrEP care in settings with fewer providers or for low-income/uninsured clients with substantial barriers to care.
  • Note that not all participants saw the 60-day limit as a problem. Those who were familiar with being on PrEP felt that the limited supply would put them on a similar schedule of completing the required laboratory testing for continued access to PrEP. Since PrEP is typically prescribed in 90-day increments, some wondered why the law only allowed for a 60-day supply.
• Efficiency associated with pharmacist furnished PrEP is temporary. Once someone has exhausted the 60-day supply of PrEP, transitioning to an ongoing PrEP provider will require effort, which some consumers may not be able or willing to undertake. These barriers may deter people from continuing. As one participant put it succinctly, “it just seems like a gateway that leads to a dead end.”

“I don’t see this as an appropriate way for a lot of high-risk folk who are high risk of HIV transmission to get their continuing care. It just seems like a gateway that leads to a dead end. …Specifically, it’s easier to see in the San Francisco gay community access is not hard at all. But if you’re say in the burbs of Los Angeles and you’re a transwoman who is a sex worker who makes their money by tricking, essentially, I just don’t see that as an apt method to continue – I just don’t see those populations being nearly as able to go through these hoops. Again, it’s a gateway. It’s opening a 60-day dosage. But then after that, it’s really not a springboard.” (Focus group participant #3, transwoman, age 27)

• Issues related to pharmacist and pharmacy staff capacity and competency were raised. Participants who experienced pharmacies as being unfriendly settings and consistently busy questioned whether pharmacies had enough staff to serve consumers seeking PrEP or PEP. Participants also wondered if pharmacists and other staff would be aware of the sensitivity around seeking PrEP/PEP and if they would have received sufficient training around contraindications.
• Questions about cost, laboratory testing and the possibility of missed opportunities for other medical care were all raised. Some participants also worried that there would be a missed opportunity for other screenings (e.g., other STI screenings) that are often recommended when a patient seeks out PrEP, for example.

Recommendations from Participants

Participants made a number of recommendations to address these concerns outlined above:

• Ensure that clients who seek out PrEP/PEP receive proper support and referrals to medical services, and make sure that there are strong referral networks in place for people to connect to ongoing PrEP access. If possible, connecting clients to PrEP navigation services could facilitate linkage to on-going PrEP care. Participants were concerned about getting an impersonal referral to a PCP and no support beyond that.
• Provide training on cultural competency and gender affirming care.
• Promote privacy of clients seeking PrEP/PEP in pharmacies:
  • Have private spaces available or expand the space so that there is less risk of being overheard at the counter.
  • Allow people to ask for PEP or PrEP using a piece of paper rather than verbally (so as not to be overheard).
  • Train pharmacy staff on the potentially sensitive nature of PEP and PrEP.
• Publicize the program and be clear about the limitations so that people have appropriate expectations.
• Having a designated “PrEP day” each week to address capacity issues in busy pharmacies and ensure that there is dedicated staff time.
• A 60-day supply of PrEP is a good option, but 90 days would align with the CDC guideline to provide a 30-day supply with two refills and benefit clients with significant barriers to accessing care.

“I think that the only way it’s going to work is to make sure that there’s follow-up, some type of case manager once you get your 60 days to help you on this path of finding a provider and making sure you’re set up so that you can get your medicine ongoing.” (Focus group participant #5, Black/AA female, age 40)

This report highlights the reactions that potential consumers had to a law scheduled to go into effect on July 1, 2020 which allows community pharmacists to initiate and furnish PEP and PrEP without a prescription. Consumers readily grasped the value of this new law for persons seeking PEP. The need for timely access to this medication made pharmacy access sensible. Pharmacies, in general, were perceived to be easier to access than a clinic or emergency department, medical settings consumers associated with traditional PEP access. Thus, we noted widespread endorsement of the aspects of the law related to PEP. With regard to PrEP, consumers voiced more questions and concerns before offering an opinion about the new law. In other words, pharmacy access to PrEP, a preventative medication typically taken on an on-going basis made less sense to interviewees. They struggled to imagine how it might work in real life. Fortunately, some of the more immediate concerns raised by consumers were already addressed in the language of the law, such as the need for pharmacy staff trainings and the need for referrals to medical care (although consumers expressed a desire for more personalized and hands-on referrals than may be provided). Noting the overlap between consumer concerns and the language of the law is important as it highlights areas of shared agreement. It is equally important to identify areas of disagreement and gaps between consumer concerns and the law.

Many participants had questions about the cost coverage for PrEP and PEP as well as the training that the pharmacists would receive. When publicizing the program for potential consumers, it would be useful to provide clear answers to these questions. If consumers understand that pharmacists have undergone special training and that support is available for referrals to ongoing medical care, then that may enhance their comfort in seeking out PrEP/PEP directly from a pharmacy. It is also important in the case of PrEP to ensure that there are referral networks in place to PrEP providers and that clients who need additional support linking to care can be connected with intensive navigational support. Most participants felt that this was the biggest concern with the new law – that it would only temporarily help people to access PrEP, and that those who had the most barriers to care would be unable to continue accessing the drug. Despite that concern, participants saw a clear benefit of the program for individuals who may be uncomfortable approaching their regular healthcare provider for PrEP or PEP, as well those who have not established care with a regular provider. Some participants in our sample felt that they personally would have benefitted from such a mechanism to access PrEP while they were between jobs or healthcare providers.

In our future research we plan to assess the types of individuals who initiate pharmacy-access to PEP and PrEP. In particular, we plan to follow individuals who initiated PrEP with a pharmacist to observe whether and how they transition into on-going PrEP services. Participants in our study had mixed opinions about whether or not a 60-day supply of PrEP would be sufficient to engage in ongoing PrEP care without a gap in coverage. Further implementation science research should be conducted once the new law has been implemented in July 2020 and consumers have had a chance to attempt to seek PrEP and/or PEP under the new law. This would provide important insights into modifications that may be needed to truly optimize the law.

We are grateful to all of the study participants for taking time to speak with us, and to Alé Vazquez, Lara Miller, and Shivani Subhedar who helped us with data collection.

This research was supported by funds from the California HIV/AIDS Research Program, Office of the President, University of California, Grant Number RP15-SF-096.

Benefits:

Addressing acute needs:

“The 60-day supply is really to get you from your worry from whatever happened right now to a health care provider that can get you to sustained care.” (Focus group participant #6, white male, age 52)

Saving time and cost:

“So, the beauty of this is really cutting out the doctor middleman and the cost of the office visit, which is always huge.” (Focus group participant #4, Latina female, age 47)

Beneficial for people between jobs or new to the area:

“But in the scenario when I first came out here and didn’t know how to access it, had there been information online about like you can access PrEP directly at a pharmacist for 60 days. Like that would’ve been super helpful.” (Interview #3, white male, age 31)

Reducing barriers to PrEP:

“I’m thinking that these new regulations or new policies that are coming out, is kind of addressing things for people like me. They’re like, we’re going to get rid of those excuses so you can’t use them anymore. I think that’s what … I’m not sure, obviously, they don’t know me. But I’m sure a lot of people also have similar excuses, or similar kind of stories. So, they’ve heard this and they go, you know what? We’re going to do our best to kind of eliminate all those excuses you’re trying to give us….I didn’t do it [start PrEP] because I was coming up with all these self-imposed excuses.” (Interview #4, Asian male, age 34)

For some, it may be or less stigmatizing to see a pharmacist:

Participant: Even me to even go to my primary physician to ask for [PrEP], it was kind of like oh, do I really want to ask, you know. So, I can definitely see somebody who doesn’t feel comfortable going to a primary physician to ask. Or going to a pharmacist and getting that prescription. So, you know, people like me who are uncomfortable, but also the younger generation who don’t have, you know, healthcare or anything like that. I think that would totally benefit for them as well.

Interviewer: …what do you think perhaps makes a pharmacist easier to approach than a regular primary care doctor?

Participant: The pharmacist doesn’t really know much about – doesn’t really know you like on that personal level as your doctor does. You know, my doctor, I’ve been going there for many years. Like he knows me. So, you know, if I would’ve had this opportunity like hey, I’m going to this random pharmacist who doesn’t know who I am, sure he’s taking information from me, but at least I know I’ll be able to get the prescription.” (Interview #6, Latino male, age 45)

Concerns

Privacy concerns:

“Obviously, if I’m at my PCP, we’re in a private office. We talk, everything is in literally in closed doors. At a pharmacy, the one that I go to regularly, there is no private office. You’re talking at a booth. It’s like basically you’re talking at the counter with the pharmacist. So the people in the back room, the people behind you, can hear everything. I think that’s a huge disadvantage, and I think I know some pharmacists and pharmacies that have kind of a private booth that they can speak to you in. But in general, the ones that I go to, like Walgreens and CVS and things like that, it’s a counter like you would find in any kind of regular retail store. Which I think is hugely kind of completely lack of any privacy at all. So I wouldn’t want to have that kind of conversation in broad daylight in front of everybody. So that’s a giant concern of mine.” (Interview #4, Asian male, age 34)

“Gateway to a dead end”:

“But I don’t see this as an appropriate way for a lot of high-risk folk who are high risk of HIV transmission to get their continuing care. It just seems like a gateway that leads to a dead end. …Specifically, it’s easier to see in the San Francisco gay community access is not hard at all. But if you’re say in the burbs of Los Angeles and you’re a transwoman who is a sex worker who makes their money by tricking, essentially, I just don’t see that as an apt method to continue – I just don’t see those populations being nearly as able to go through these hoops. Again, it’s a gateway. It’s opening a 60-day dosage. But then after that, it’s really not a springboard.” (Focus group participant #3, transwoman, age 27)

Setting up unrealistic expectations for convenience:

“I guess part of my worry is, my guess is people will want to take advantage of this because of the ease of it. And perceived convenience of it. But then it seems like once you do it for the first time, and hey, this is easy and convenient, they’re also saying, okay, but the next time you do it, it’s going to be harder. I worry that sort of just with like human nature, that if their threshold to getting PrEP was kind of high and required this level of convenience, that if you’re switching it up on them afterwards, that you’re going to lose people. Because I have to wonder if they had the tools or resources – and that’s intentionally very vague. If they had the tools or resources to go to an NP or doctor or more consistent provider, would they already be doing it? And if you kind of give them the carrot of pharmacy-provided PrEP, and then say, okay, but if you want this again, you’ve got to do these other moves that may not be super-practical for you, or you may have X, Y, or Z barriers, this is the only way to do it.” (Interview #1, white male, age 34)

May not be that much more efficient than seeing a regular provider:

Interviewer: So there’s really no getting around the testing, no matter where you are getting it.

Participant: Yeah. Then I don’t see a big, big benefit from getting it directly from a pharmacist then. Because I’m looking as not necessarily whether I’m getting it because of ease … I’m looking at it ease of use as well. Ease of access. And if it’s still – there’s an inefficiency of me having to get tested first and then get the PrEP and things like that, then I might as well just go to my physician. I mean because if it takes five steps and several days to do it from a pharmacist and the same thing with the same amount of steps and the same amount of time, why would I go through a pharmacist? There is no added benefit. The only added benefit I thought previously as kind of the immediacy of it. But there isn’t. You still have to kind of jump through all the hoops. Which I think are important hoops. (Interview #4, Asian male, age 34)

Recommendations

60 days is good but 90 days would be better:

“I know this is not something that can be changed because it’s a law – I feel like 60 days is good, but I feel like, I don’t know, 90 days would’ve been better. Because it can take, like in my experience, like it did take me a little while to get the health insurance. You know, my first appointment with my primary doctor. Then get booked into the next, the PrEP provider nurse. And then to actually get the medication. So, it can be an arduous process to access that through your primary care provider. So, yeah, my only feedback would be just the length of time.” (Interview #3, white male, age 31)

Consider a dedicated day when this service would be available:

“My son goes to [names local health facility]. They do the flu clinics, and they have the phlebotomist there and they do everything right there. I just don’t see how this would go on at a pharmacy place unless maybe there was somebody, a pharmacy staff member, scheduled to just do this, because with the pharmacy being so busy with everything else, how are they going to have time for this? I think that it should be like how they have those flu clinics set up at [health facility], one person, maybe a day out of the month or certain hours, who will just be focusing on this.” (Focus group participant #5, Black/AA female, age 40)

Need for navigation support:

“The thing is it’s easy for us to think – I think living in the Bay Area, I think I could just immediately list clinics or providers. But say maybe you’re living in, let me think, Tracy, California, and you go to your nearest pharmacy to get PrEP. Then their referral, is it geographically located? Is it by your insurance? Is it by, I’m trying to think, rating, even that? It’s kind of hard to imagine what that would look like without actually knowing what a referral would be structured as. Is it just a link to a list of providers, and then how is that list organized? There does seem to be a need of a third or fourth entity like PrEP navigators or an external private list of providers that is collated by constituents of the drug. But it’s kind of hard because if this isn’t also streamlined into each of the pharmacies that are participating, then it’s kind of meaningless to have those resources.” (Focus group participant #3, transwoman, age 27)

“I think that the only way that it’s going to work is to make sure that there’s follow-up, some type of case manager once you get your 60 days to help you on this path of finding a provider and making sure you’re set up so that you can get your medicine ongoing.” (Focus group participant #5, Black/AA female, age 40)