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Methodology

The second, more extensive survey was intended to provide a more in-depth and nuanced understanding of GBTQ men's experiences, barriers, attitudes, and preferences relating to PrEP access and coverage in Alberta. The survey was open for responses from September 29 to October 7, 2016. The survey was available for completion online only through Google Forms and was promoted via social media, primarily through Facebook and Twitter. A total of 161 on-target responses were received. 

 

To create a fuller picture, the survey collected both quantitative and qualitative data from respondents using a concurrent nested survey design. A mixed methods approach to analysis was used, with a univariate analysis method applied to quantitative data to produce descriptive statistics and a thematic analysis being applied to qualitative data to identify key themes presented in the data. 

Demographics

The gender identity of respondents remained largely cisgender male (94%), with 3% identifying as gender queer or gender non-binary. A total of 89% identified their sexual orientation as gay, with the next highest proportions identifying as bisexual (6%) and queer (3%). The age spread of the second survey group was similarly concentrated below the age of 40 (82%) and within the 20-29 range (43%).

Data on race and ethnicity was collected in the second survey, with 89% of respondents identifying as White/Caucasian, followed by 4% as Indigenous, 3% as Southeast Asian, 2% as Mixed Race, 1% as Middle Eastern and 1% as Unspecified.

Approximately two-thirds of survey respondents resided in Edmonton, with 21% residing in Calgary. The household income of respondents, which is relevant particularly in relation to questions about affordability, was highly distributed across all income strata.

Survey No. 2 Methodology & Demographics

The vast majority of participants were HIV-negative (89%), with HIV-positive respondents totaling 8% and a further 3% indicating that their status was unknown.

Of note, only 26% of respondents stated that they had completed the previous survey earlier in 2016. A total of 64% indicated they had not completed the previous survey, although a further 14% responded they were unsure if they had participated in the first survey or not.

Findings & Analysis

Strong interest in PrEP reconfirmed, but many are not using the medication:

A total of 81% of respondents heard of and felt they had a good understanding of PrEP. An additional 17% had heard of PrEP but did not understand it well. Only 2% were not aware of PrEP. Within the HIV negative cohort of 149 respondents, 83 (56%) scored themselves as “very interested” in taking PrEP—the highest measure on the scale. Finally, two-thirds of respondents (66%) indicated being eligible for PrEP based on the draft Canadian PrEP/nPEP guidelines. 

Despite this widespread knowledge and interest, only 6% of HIV negative respondents were taking PrEP at the time of the survey. A total of 79% of participants had never tried to obtain PrEP, while 21% indicated having attempted to obtain PrEP at some point. Of that 21%, 2/3 indicated being unsuccessful, while the remaining 1/3 had been successful in obtaining the drug.

 

Many of those attempting to access PrEP found the process unclear and healthcare providers unknowledgeable and unhelpful:

Participants who tried to access PrEP (n=31) were asked to quantify the clarity of the process on a scale of 10, with one as the lowest ranking.


Almost half of respondents who had tried to access PrEP (13 out of 31) gave the process the lowest clarity ranking. Approximately 84% of all respondents gave the process a score of five or lower.

“When I asked about PrEP, I received a curt response from the nurse, asking if I was HIV positive, and I replied no. And she asked, ‘Then why are you asking for PrEP?’ It was very uncomfortable to even have a conversation about it. Even asking to get informed on PrEP is not easy.”

 

- Anonymous respondent

Respondents reported that the most common healthcare provider they had spoken with about PrEP was a family doctor or general practitioner, followed by a Sexually Transmitted Infections (STI) clinic nurse. However, as exemplified in the above quote, a lack of knowledge and support from healthcare providers was cited as a common barrier to accessing PrEP.

When asked to rate the knowledge level of the provider they spoke to about PrEP, on a scale of 10, with one being “Not at All Knowledgeable” and ten being “Very Knowledgeable,” nine respondents rated the provider’s level of knowledge at a score of one and nearly half (15 out of 31) rated the provider’s level of knowledge at a score of three or lower.

When asked how helpful the provider was in helping them obtain PrEP, on a scale of 10, with one being “Not at All Helpful” and ten being “Very Helpful,” once again, nine respondents rated the provider at the lowest score of one and more than half (16 out of 31) scored their provider at a three or lower.

One area in which providers scored higher was related to whether or not they were supportive of the respondent’s desire to learn more about and/or access PrEP. On a scale of 10, with one being “Not at All Supportive” and ten being “Very Supportive” more than half of respondent’s (18 out of 31) rated the provider at a score of seven or higher. However, even with providers scoring higher on this level, it is important to recognize a range of experiences, demonstrated by the fact that both one, being “Not at All Supportive,” and ten, being “Very Supportive,” were the most common selections made by participants with six selections each.

 

Almost two-thirds of individuals who tried to obtain coverage for PrEP were unsuccessful:

Of those who attempted to access PrEP (n=31), 90% had current prescription drug coverage. Additionally, 70% of those who had attempted to access PrEP indicated having tried to obtain coverage for the drug. However, 63% of those who tried to obtain coverage or funding for the drug were unsuccessful.

 

The most common reason given to respondents who had their request for coverage denied was that while their insurance provider may or may not reimburse Truvada for the treatment of HIV, they do not reimburse Truvada for use as HIV pre-exposure prophylaxis in HIV-negative individuals.

Survey respondents give Alberta a largely mixed score on HIV prevention—and feel access to PrEP would improve the province’s record:

When all respondents were asked to score Alberta’s record on HIV prevention on a scale of 1 through 10 with 1 being "Very Poor" and 10 being "Excellent," respondents clustered around the middle, with a mean response of 4.5, a median response of 5 and a mode of 4.

However, when asked if making PrEP affordable and accessible would affect this score, a total of 92% of respondents suggested their rating would be positively affected. An additional 4% suggested it would have no effect on their rating and another 4% indicated they did not know what impact it would have. No respondents suggested it would negatively affect their score.

 

Respondents recommend that PrEP be available from a wide variety of healthcare providers:

“PrEP is not a super complicated concept/medication. I feel any health care provider is able to learn about it in a reasonable amount of time and still feel comfortable with it. PrEP should be as reasonable to prescribe as birth control.”

 

- Anonymous respondent

Survey participants indicated that a prescription for PrEP should be available at a number of locations, such as a general practitioner's office, STI clinic, pharmacies, and community outreach organizations.

[Charts viewed best on desktop]

Approximately two-thirds of survey participants (72%) also reacted negatively to the suggestion that only healthcare providers with previous experience in HIV treatment should be permitted to prescribe PrEP.

 

As another respondent succinctly stated: “Gatekeeping will only benefit the careers of those providers, not the community at large.”

 

Respondents expect government and/or private insurers to play a significant role in PrEP coverage:

Participants were presented with several distinct scenarios for PrEP funding or coverage, arranged on a spectrum of increasing personal responsibility:

  • 100% government coverage

  • 100% private insurance

  • Blended coverage with no cost to the individual

  • Blended coverage with some cost to the individual

  • 100% individual cost (out-of-pocket)

 

As illustrated in the chart below, participant reaction to 100% of the cost falling to the individual taking PrEP was decisively negative—140 out of 161 individuals deemed this option “unacceptable.”

[Charts viewed best on desktop]

Conversely, scenarios involving no cost to the individual received strong support from respondents. Interestingly, the blended coverage option, with no individual cost, was ranked significantly higher in comparison to the 100% private insurance option.

Although speculative, this preference could suggest that, even in equivalent no-cost situations, respondents believe government has an important role to play in ensuring access to PrEP.

 

HIV-Positive respondents support access to PrEP and believe it might have prevented their own infections:

Although a small sample size, 100% of HIV positive individuals surveyed felt that HIV negative individuals should have access to PrEP. A total of 42% also believed that access to PrEP would have prevented their own infection, with an additional 33% considering prevention a possibility.

 

“[PrEP] would be another tool to keep us safe. It would not be the only tool but it would really help save a lot of people's lives from many hardships.”

 

- Anonymous respondent

 

Respondents feel that increased access to PrEP will have a positive impact on themselves, the community, and society-at-large:

Participants were given the opportunity to share how they felt increased access to PrEP would affect themselves, the community, and society-at-large. The most common themes which arose in each case were:

Individual Participants:

  • It would make me feel safer, provide an extra layer of protection, and reduce HIV risk

  • It would improve mental health and reduce stress and anxiety around HIV transmission

 

“Fears around HIV are a constant part of my reality being a gay man. I have needed to access post-exposure prophylaxis in the past and if I was on PrEP I would not have needed to worry about possible infection and mental health issues that come with that fear.”

- Anonymous respondent

 

The GBTQ Community:

  • It would improve public health through decreasing the rate of new HIV infections

  • It would reduce HIV stigma

  • It would reinforce the value and worth of GBTQ community members

“It would be very good for our community. It would send a message that Canada's once most conservative province sees vulnerable members of the LGBTQ community as being equal and worth protecting.”

 

- Anonymous respondent

 

Society-at-Large:

 

  • It would improve public health through decreasing the rate of new HIV infections

  • It would provide cost-savings to the public healthcare system over time by decreasing the costs of long-term HIV care

“Any measure that helps reduce the transmission of the HIV virus should be considered beneficial to the public. Reduced health care costs and safety are all benefits."

 

- Anonymous respondent

Limitations

In being one of the first provincial surveys to explore GBTQ men's experiences, attitudes, and preferences as it relates to PrEP access in Alberta (and the first to collect qualitative data on the topic), the data collected from a total of 161 on-target responses provides new and valuable insights. However, there are several limitations that must be recognized before making generalizations about the broader Alberta GBTQ male population:

 

  • Given the study’s cross-sectional nature, the survey only provides a snapshot of the sample at one particular time; therefore caution should be used when attempting to use this data to make inferences about the sample’s current experiences, preferences, and attitudes as it relates to PrEP.

  • The sample was likely disproportionately composed of young, cisgender, gay-identifying, white men who live in urban centres. Therefore, caution should be taken when attempting to use this data to make inferences about the experiences, preferences, and attitudes of the broader Alberta GBTQ population.

  • The survey was promoted via social media, primarily through Facaebook and Twitter, with a mix of organic peer-to-peer sharing and paid promotion through various Alberta LGBTQ social media pages. Although intentional efforts were made to share the survey widely, the sample is likely biased toward individuals who engage regularly with the specific social media platforms used to share the survey, those who are engaged with LGBTQ social media pages, and those who follow or are "friends" of social media accounts belonging to individuals who follow pages which employed paid/targeted “boosting” to promote the survey.

  • Survey respondents were able to participate in the survey voluntarily, leading to potential self-selection bias. Because of this, caution should be made before generalizing the results as there is a chance that the those who voluntarily chose to complete the sample might have a greater knowledge or interest in PrEP than the general Alberta GBTQ male population.