The beginning of America’s AIDS (Acquired Immune Deficiency Syndrome) crisis in the 1980s and 1990s was marked by both the stigma equating affected people with biblical lepers and social movements demanding vaccines and cures for the mysterious disease. As of July 2018, there has been an avenue for at-risk Americans to prevent HIV/AIDS with almost one hundred percent effectiveness for six years. Marketed as Truvada, this Pre-Exposure Prophylaxis or PrEP pill, when taken once daily, can prevent the Human Immunodeficiency Virus (HIV) from replicating and thus infecting an otherwise healthy body. When looking back on the hysteria that the AIDS epidemic wrought in the 1980s, PrEP at face value seems like a miracle comparable to penicillin or the polio vaccine. So how come over ninety percent of the 1.2 million Americans at risk for HIV/AIDS are not getting a PrEP prescription from their healthcare provider?
Critics are quick to blame solely one thing or another, which is typical of most modern discourse. In most people’s head, only one inherently evil person, ideology, or corporation stands between the world and the common good. The entire healthcare network of physicians, insurance companies, pharmaceutical companies, policymakers, and even patients are quick to blame any side of the equation but themselves. The truth is that no one person is dangling PrEP just out of reach of the Americans who need it. It is rather a combination of circumstances in America’s already unorganized healthcare system that is to blame.
The easiest culprit to blame is Gilead Sciences, the large pharmaceutical company that charges about twenty thousand dollars domestically for a year’s supply of the drug. Although the treatment is covered by some insurance companies and Gilead offers a co-pay option, both of these routes often involve forms, phone calls, and waits, which can deter some potential patients who simply want a prescription and directions to the pharmacy. However, there is a general consensus that even the shockingly high cost of Truvada is much less than the yearly cost of an HIV treatment regimen. It can be easy to blame big pharma and large insurance companies, because as humans we like to believe that the less of a human face something has, the more impersonal and corrupt it is. However, there are plenty of reasons that the error and prejudice of people is also keeping PrEP out of reach for a million people.
There is no doubt an ingrained cultural bias against many groups that would benefit from PrEP, such as Men who have Sex with Men (MSM), Injection Drug Users (IDUs), and Commercial Sex Workers (CSWs). Much like critics of birth control in the 1960s, critics of PrEP today claim that the drug promotes risky behavior such as unprotected sex and injection drug use, which will only lead to more health problems other than HIV for patients. The derogatory term “Truvada whores” has been coined by Internet trolls, and there have been cases in the last year of otherwise respectable people being denied life insurance because they take PrEP. Although at-risk groups are most aware of PrEP’s existence (which most Americans still are not), they are also aware of the stigma that surrounds taking it, and thus will not seek it out with their healthcare provider. This affects potential PrEP patients beyond the most at-risk groups people always hear about. Although PrEP was looked into for women in domestic violence situations where condom use could not be negotiated, many women reported worrying that if a partner or family member found out that they were taking it, they would be ostracized by their community or even assaulted by their partners as a “promiscuous wife.” This could also be a potential problem for certain serodiscordant couples attempting to conceive but not wanting to join “The Truvada Whores.”
In addition, any mention of an AIDS medication, especially in the LGBT community, brings up bleak memories of the drug cocktails used in the 1980s and 90s with side effects that some viewed as worse than the disease itself. PrEP has not shown widespread serious side effects in its studies, although like every drug, it is not right for everybody. Other critics worry that PrEP may lead to existing strands of HIV to become resistant to ART (Antiretroviral Therapy which is used on people already infected), although most studies show that the only risk for this is when PrEP is taken infrequently or incorrectly.
Accusatory fingers can land this way and that, but they seldom land on doctors. In American society, doctors are viewed as wise and infallible, but they cannot help but be sucked into the same culture that they reside in. Despite interest groups being quick to blame big pharma, there is a considerable level of responsibility that also falls on a physicians shoulders (after all, they are the ones writing or not writing the prescriptions); the average American physician’s response to PrEP is an interesting case for aspiring healthcare providers to study. There is no doubt that in America one’s healthcare experience will vary widely depending on which physician they have. One problem is that many general practice doctors still do not know what PrEP is. They see it as the job of HIV specialists in the United States to research and prescribe PrEP to patients, especially because the Centers for Disease Control (CDC) recommends quarterly follow-ups between patients and PrEP providers. However, there are not enough specialists to keep up with current demand, so some responsibility is heaved into general practice doctors. Even if they are aware what PrEP is, doctors may only prescribe it to groups stereotypically at risk for HIV such as MSM and neglect smaller groups that could be at risk such as serodiscordant couples or women in domestic violence situations; general practice physicians do not usually probe into these patients’ sex practices as deeply as a specialist would.
One final factor preventing physicians from effectively prescribing PrEP is their human fear of risk-compensation, or when a patient prescribed PrEP will feel like they are “free” and neglect other healthy habits such as condoms. Cynics can blame this predisposition on “Truvada whore” culture, or they could see it as a physician that wants to control every aspect of their client’s lifestyle. Either way, recent studies and surveys have actually proven that PrEP encourages, rather than discourages, healthy habits. Because it is standard practice to prescribe PrEP along with quarterly follow-up appointments and HIV-testing, patients report practicing safer sex habits because they know that they will be asked about it at the next appointment with their provider. The conundrum of whether doctors should prescribe PrEP to patients who practice risky behaviors also brings up the same question that was presented when birth control was first approved by the FDA: is a doctor’s job to give their clients an all-or-nothing approach to health or to adapt to their clients’ lifestyles in order to make them as healthy as possible? This question is an interesting one to ponder, especially for an aspiring or new doctor.
In the medical field, people like to idealize the sentiment that drug development is a straight line from creation to approval to distribution. However, the reality is that even with the conveniences of modern technology, it is hardly that simple. Additionally, the systems keeping medications out of patient hands are not always slanderous generalizations like “corporate greed” or “cultural bigotry.” The world we live in is large, interconnected, and complicated, and the issues faced with getting PrEP to everyone who needs it demonstrate that the world’s medical challenges are simply aligning with the times.
Ellie Rose Mattoon is a biology track college student at Texas Academy of Mathematics and Science (TAMS) in Denton, TX.