Middle Tennessee may not have a reputation for progressive health care, but Lance had no problem obtaining the HIV-prevention medication known as pre-exposure prophylaxis (PrEP) when he lived in the Volunteer State. It wasn't until he and his partner, Nicholas, moved to California that he lost access to what many consider a revolutionary drug in the fight against HIV.
"I have about 10 pills left," Lance said when interviewed by TheBody in late June. "I'm more scared than anything else." (TheBody is using the pseudonyms "Lance" and "Nicholas," instead of the individuals' real names, at their request to protect Lance from potential consequences at the hands of his employer.)
While his new home state is considered a domestic leader in efforts to increase the availability of PrEP, Lance found himself among the unknown number of Americans who cannot access the medicine because his employer instructed its insurance provider not to cover it.
Lance began PrEP in 2017 through his employer-provided insurance in Tennessee, and he continued receiving the drug at his first manufacturing job in California. However, when he started working this spring at a division of Caterpillar, Inc., the world's largest manufacturer of construction equipment and an employer of nearly 100,000 people worldwide, Lance learned there was a drawback to his career advancement.
"We called the insurance company just to see what the copay was going to be under the new insurance and were told [PrEP] required pre-authorization," Nicholas said. The couple hadn't expected the extra steps after moving to a progressive state, and they became worried when they noticed that Caterpillar had a specific pre-authorization form for the medication and using the drug for prevention was not among the categories listed for coverage.
PrEP is the common name for the preventative form of Truvada (FTC/tenofovir disoproxil fumarate). Since 2004, Truvada has been used in combination with other drugs to treat those living with HIV, and in recent years, the drug has emerged as a fortified shield from the disease when taken by HIV-negative individuals. The Centers for Disease Control and Prevention (CDC) says that using Truvada as PrEP virtually eliminates the possibility of acquiring HIV, and PrEP has been widely heralded as a breakthrough due to its potential to help curb the epidemic.
However, the pre-authorization form provided by Caterpillar listed only two categories for coverage of Truvada: use as treatment for HIV or "following contact with a known HIV+ individual ... for emergency purposes only," also known as post-exposure prophylaxis (PEP). A space was provided for "other" uses; however, when Lance's doctor indicated that Truvada would be used as PrEP, Lance received a string of rejection letters from the insurance company.
"Truvada is denied for medical necessity," the rejection letters stated, specifying that it was approved only for HIV-positive individuals and those who have recently been exposed on an emergency-only basis. "Based on the information submitted, your request fails to meet the [insurance] Plan's coverage requirements. Therefore, prior authorization is denied."
Having exhausted appeals, Lance and Nicholas were dumfounded and desperate.
"Everybody in California is on PrEP, and so, for the company to refuse to cover it, we were shocked," Nicholas said. "There are smaller companies out there that offer PrEP, so for a Fortune 500 company as big as Caterpillar to not cover it is shocking."
Based in Peoria, Illinois, Caterpillar is ranked number 65 on the 2017 Fortune 500 list. According to the company, it has 118,800 employees globally, 51,500 of whom are in the U.S.
TheBody contacted Caterpillar representatives on July 2 and that day received the first in a series of messages indicating that the company was working on a response. On July 11, less than 20 minutes before the submission deadline for this article, Caterpillar sent a statement announcing a change to its insurance policy.
"At Caterpillar, we are committed to supporting the health and well-being of our employees," Caterpillar U.S. corporate media manager Corrie Scott wrote. "We evaluate our drug formulary on an ongoing basis. Review of the drug Truvada was underway and expanded coverage to include PrEP is due to be announced as part of our quarterly formulary update, effective Aug. 1."
Scott noted that the new policy applies to its U.S. workforce, and "while it's not exhaustive of all subsidiaries, it's largely inclusive."
Blind Spots or Malicious Oversights?
While relieved by the promised reversal by Caterpillar, the company's initial stance has left Nicholas unsettled.
"I don't know if it was benign oversight, and I'm not quite sure how a major corporation could let it fall into a blind spot," Nicholas said. "It's something Caterpillar was specifically requiring prior authorization for -- and specifically denying. They knew enough to ask if you are using Truvada for PrEP, and then, they would deny the prior authorization. With some of the small companies, it might be a financial issue as to why they don't cover it; I get it, it's an expensive drug. But major corporations, companies on the Fortune 500 list, choosing not to cover it, I see that as more malicious."
A monthly supply of Truvada is estimated to cost between $1,300-$1,500 without insurance, although insurance and pharmaceutical company copay programs provide the drug to many for little or no cost. PrEP advocates note that the cost of the drug for HIV prevention is significantly less than projected costs of treating an individual who contracts HIV, and they believe it benefits a company's bottom line to cover Truvada as PrEP.
"There have been a few folks who have come to us regarding this issue [of an employer not including PrEP in insurance coverage]," said Scott Schoettes, the HIV project director at Lambda Legal, a national legal group that advocates for people living with HIV. "As of right now, there's nothing that would require an employer to provide this as part of their health care plan, and so the best remedy right now is public-shaming, or arguing to them that this is really a cost-saving measure because it prevents HIV."
Earlier this year, TheBody reported on the southeastern supermarket chain Publix's denial of PrEP coverage to its employees, although the company quickly announced that it was changing its insurance policy after a significant backlash. With public awareness of PrEP still nascent, Schoettes is willing to give companies the benefit of the doubt that they are denying coverage because they don't know about the drug's effectiveness and potential.
"I would say right now it's more of a blind spot," Schoettes said. "We're seeing that in the couple of instances where employers were not providing this care, and then when it was made clear to those employers the importance of providing this care to people at risk for HIV, when it was brought to their attention, then those employers reversed course. I hope that trend continues."
Caterpillar scored a 90% on the most recent Corporate Equality Index issued by the Human Rights Campaign (HRC), having been penalized only for its failure to offer transgender-inclusive health insurance coverage. An HRC media representative e-mailed TheBody on July 2 indicating they would respond to questions about whether they would start asking companies about PrEP coverage in the corporate survey. However, after repeated attempts to finalize an interview, an HRC media representative said that no spokesperson would be available prior to this article's publication.
It's hard for Nicholas to consider a company LGBT-friendly if it ignores HIV-prevention trends as significant as PrEP.
"I'm not sure if Caterpillar thinks that only straight men work for their company, so there's no need to cover the medication, if it is more of just a money issue, or if its straight up discrimination against gays," he said.
Schoettes agreed that coverage of PrEP could be used to gauge corporate friendliness toward the LGBT community.
"I think that would be a smart thing to make [companies] more aware that this is an important benefit for, not just the LGBTQ population, but all populations that are at higher risk," Schoettes said. "This is an important prevention technology that we've been fortunate enough to develop, and it needs to be rolled out in a way that everyone has access to it so that we can prevent new cases of HIV. That's the goal here, and we need employers to get on board with that."
HIV-Prevention Goals "Cannot Be Met Without Partnerships"
California officials have similar expectations that businesses will help the state reach its goals in the Laying a Foundation for Getting to Zero campaign, which aims for zero new HIV transmissions, zero AIDS deaths, and zero HIV/AIDS stigma or discrimination. The initiative was announced in 2016, the last year of available CDC data, which showed California leading the nation in the total number of new HIV diagnoses.
"The goals of California's plan, Laying a Foundation for Getting to Zero, cannot be met without partnerships and collaborations from a wide set of interests, including local public health partners, other state agencies, community organizations, and private industry," the California Department of Public Health said in a statement to TheBody. "Private industry, in particular, has a large role in supporting Getting to Zero efforts and the overall health and wellness of their employees by providing affordable access to comprehensive health care that addresses the health needs of all their employees."
In 2016, the state had a rate of 32 PrEP users per 100,000 residents, which tied it for the seventh highest PrEP usage rate in the country. Much of the advocacy around PrEP has focused on providing access to those without insurance, but last month California expanded its PrEP Assistance Program to include individuals with insurance and Medicare, according to the statement provided by the California Department of Public Health.
No state lists PrEP among its mandates that insurance policies must include, but that remains a possibility in a progressive state like California, Schoettes said.
"[A] real special solution for this is for Truvada as PrEP to be given an "A" rating by the U.S. Preventative Services Taskforce," Schoettes said. "Once it has an 'A' rating from that body, then it becomes more difficult for insurers and health plans to not provide it as part of their coverage. This is a process that generally takes a while. They really do a thorough job of vetting the procedures and the medications that they give this rating to, but this is something that has been in the works and could go a long way toward making this the norm for health insurance plans."
Nevertheless, companies could challenge the mandating of PrEP in insurance coverage. In 2015, the U.S. Supreme Court ruled in Burwell v. Hobby Lobby that closely held companies could opt out of requirements to provide birth control if doing so conflicted with their deeply held religious convictions, and there is concern that similar opposition to PrEP could emerge.
"It's not something we've really seen asserted so far in these denials, and I'm hoping that it's not something that arises as an issue," Schoettes said. "It just hasn't come into play right now because companies aren't required to provide this type of coverage. I think that once we get to a place, if we do, where PrEP is a required part of a health insurance plan, well then, potentially, we could see some employers asserting Hobby Lobby as a reason they don't want to provide it, where their purported religious image would prevent covering that, similar to birth control.
"It's harder to connect the religious convictions with PrEP as opposed to birth control, but that won't stop them from trying if they want to use that, and we'll have to fight them in courts," Schoettes added. "It would be a faulty argument in that we know people are going to have sex regardless of whether or not we are making it safe to do so, and it just doesn't seem to me that we have any information that suggests taking away access to something like PrEP, or birth control, is going to reduce the amount of sex that people are having. Whatever moral objections someone may have, the fact is that sex is part of a normal, healthy life."
For Lance, the reason to be on PrEP is simple. "It's just an extra level of defense to protect myself," he said.