by Cody Fenwick
Health care decisions can be extremely difficult. They can also be very confusing.
I’ve experienced some of these decisions first-hand. When I was younger, I suffered from cystic acne, a condition which failed to significantly respond to many of the typical forms of treatment.
Eventually I ended up on an intense drug called Accutane that almost completely solved the problem. The side effects took a toll on my body; my skin and lips were constantly dry, and I had to avoid long sun exposure because of increased photosensitivity, but in the end the long-term benefits seemed to outweigh the costs.
Accutane has since been recalled by the manufacturer due to many lawsuits over much worse side effects. Some of these side effects had been made clear to me, such as the possibility of birth defects in pregnant women and an increased risk of suicidal behavior. There were other side effects of which I was completely unaware, including gastrointestinal issues ranging from inflammatory bowel disease to Crohn’s disease.
Even if I had been aware of all of the potential side effects, I probably wouldn’t have changed my mind about taking the drug. All drugs have seemingly endless lists of possible side effects, and if this deters someone, they’re unlikely to take any drug.
But just this month, a new site has been launched that aims to make communicating health care information much simpler. The site is called Informulary, and their flagship initiative is a project called DrugFactBox. In partnership with Consumer Reports, the project provides clear and simple information about medications so patients can make informed decisions.
It’s probably best if people can have these conversations with their doctors. But not everyone has a good doctor they feel comfortable having a discussion about all the necessary considerations that go into medical decisions. Some doctors lack all information or time that would be required to have such in-depth discussion. I for one was certainly rushed through the appointment in which I received my prescription for Accutane.
Had all the relevant information been available to me, I might have chosen not to take the drug after all. Surely many more people are on drugs that they wouldn’t be taking if they were full informed; perhaps many others would choose to take a beneficial treatment if its potential upsides and downsides were clearly and concisely explained. Hopefully the DrugFactBox project can help bring more clarity to these kinds of decisions.
But Informulary is doing more than just providing relevant information in an accessible format. It’s also highlighting a significant deficiency in our health care system, which in many ways has failed to emphasize the importance of basic communication.
Sometimes these failures can be deadly. For example, we know well that some medications can be deadly when mixed with street drugs or alcohol. Though perhaps some of these deaths could be linked to a lack of self-control rather than a lack of information, some experts believe that there is a fundamental lack of understanding about the dangers that can result from these fatal combinations.
Other dangers abound from confusions simply about similar-sounding drug names. And it is well known that people with limited English-language skills are often underserved by our health system.
And confusion can exist even around Tylenol, perhaps the most ubiquitous, familiar and innocent-seeming drug in the United States. For years, the Infant version of Tylenol was given in a higher concentration than the Child version, a choice which was counterintuitive, and thus unrecognized, by many patients as well as doctors. Because it was so confusing, manufacturers have since stopped this practice.
But since Tylenol can become toxic quickly, the confusion around child dosing was deadly. At least three deaths were found to related to mixups between the infant and child doses.
Medications are powerful and can do a lot of good by relieving suffering and disease. Informulary hopes to facilitate their use by the public by providing the necessary information in a useful way. But errors from failures of communication abound in the medical industry, and reducing these missteps ought to be a top priority.