Does a new California law make HIV prevention easier? A reporter seeks answers

I have reported on HIV and infectious diseases for more than two decades. Sometimes the news is hopeful, like when medication is approved to prevent HIV, a virus for which there still is no cure. Sometimes the news is extra hopeful, like when a law is passed to make it easier to obtain preventive medication, known as pre-exposure prophylaxis (PrEP). When California Gov. Gavin Newsom signed SB-159 in 2019, which would make PrEP available in pharmacies without a doctor’s prescription, I reported on it but I also thought it would be a good project for the California Data Fellowship. I wanted to explore whether the law would deliver on its promise.

The law took effect in January 2020, so there would not be data to show how well it was working by April, when the Data Fellowship reporting was due. But I could show where the greatest needs are in the state and match those areas with the number and distribution of retail pharmacies. There was an embarrassment of data riches: much of the downloadable (and up-to-date!) data sets on PrEP usage and new HIV diagnoses (which determine greatest need), broken down by age and county, had been compiled by researchers at Emory University, through its AIDSVu portal. The researchers were happy to provide the data and answer questions. The California Board of Pharmacy provided a comprehensive – up-to-date! – list of all licensed pharmacists and pharmacies in the state, all downloadable. No FOIA requests, and no waiting months for data that won’t come. Wait, could it really be that easy?

The next step was to decide what story the data could tell. After the law took effect, lawmakers needed to develop protocols for pharmacies, which would be in place, they said, by June, well after my deadline. With no way to determine whether or not the law was initially effective, I changed my goals. Not only would I locate the PrEP deserts in the state; I would also see how far people had to drive to get to their nearest pharmacy from any point in the county. I would further refine the areas of greatest need by not only using the HIV diagnoses data from AIDSVu, but also speculating on how many of the people most vulnerable to HIV live in a given zip code.

The U.S. Census doesn’t have data on how many of those vulnerable people — gay or bisexual men, or men who have sex with men (MSM) on the down-low — live in certain zip codes or counties, so I had to scrap that idea and go with the original, more manageable goal: show which counties could benefit the most, based on their current need and the number of pharmacies that could potentially opt in to the new law.

But there is more to this story than data could show. Through my reporting and listening sessions with groups of young sexually active LGBTQ people, I learned there would likely be big hurdles to obtaining PrEP at a pharmacy, even when a critical mass of pharmacies opt in to SB- 159. To get PrEP, either through a doctor’s prescription or through a pharmacist without a doctor, one has to show a recent negative HIV test. But how many pharmacies have in-house rapid HIV testing, so a person can get the test and PrEP in the same visit? I know of only one, Mission Wellness Pharmacy in San Francisco. There’s no data set on how many pharmacies provide this, nor is there a data set with locations of free HIV testing services in the state. One pharmacy I contacted, which was not yet participating in SB-159, said it would accept HIV tests only from certain labs, and of course, the patient would bear the cost.

In addition, there was no list of pharmacies that had chosen to opt in to provide PrEP under SB-159, because none, at the time of publication, had opted in. This was six months after the law took effect. In calling random pharmacies in San Bernardino County, a county of highest need for PrEP providers, none had even heard of the law. One was not sure what PrEP was.

My conclusion is this: SB-159 is a well-intentioned law that might expand access to PrEP, but only if more state money is invested in outreach, promotion, and incentives for pharmacists to participate and provide free rapid HIV testing. The law will not expand access to PrEP this year. Policymakers familiar with the law told me off the record that it would need to be tweaked before it is effective. 

The backdrop of the story I set out to tell was one of health disparities and hurdles. In short, the broader question is, why does the medical-insurance industry put up so many obstacles to obtaining a life-saving medication? Why is it so difficult to partially de-medicalize the purchase of PrEP?

This is where the community engagement grant was so valuable. In listening sessions, young LGBTQ people told me that the only way they, and presumably most, people in their position would obtain PrEP is through AIDS service organizations, men’s health clinics, Planned Parenthood, or LGBTQ-related clinics. These young people said they’d been burned by doctors who either didn’t know what PrEP was, or slut-shamed them out of using it.

Big cities such as Los Angeles and San Francisco have plenty of providers who will explain the details of PrEP, get you tested for HIV and other sexually transmitted diseases, talk with you about sexual health, and provide the medication in about an hour. But right now, if you’re not near one of those cities or you don’t have a culturally competent doctor nearby – one who will not only talk about sexual health but also recommend PrEP and give an HIV test as a matter of course during a physical — you’re living in a PrEP desert.

Meanwhile, Colorado passed a law like SB-159 and other states are considering similar measures. Their intentions are good, to help more vulnerable people access PrEP more easily. If states pass pharmacy-access legislation without removing hurdles for patients and providing incentives for pharmacies to participate, the laws will give policymakers bragging rights but won’t deliver enough real-world benefits.

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