DIY drugs: a risky prescription 

By Brent Petty, MD, & Dorela Priftanji, PharmD, MBA, Johns Hopkins Medicine

A recent news report described a practice of patients using “customized” or “DIY” medications as a cheaper alternative to those provided by the pharmaceutical industry.  This included stories of patients reformulating medications or making their own. The substantial savings promised were attractive, but can these “customized” medications be trusted? Do they really contain the needed dose? Are they produced in a way that’s safe? 

This situation brings up the topic of “compounded medications.” Compounding happens commonly within pharmacies, including outpatient and hospital settings. This can involve mixing or diluting commercially available medications to develop a formulation that meets a patient’s needs. Examples include mixing contents of a medication vial with a fluid for intravenous administration or crushing tablets to form an oral suspension for a pediatric patient. The starting ingredients used during this compounding (like medication vial and tablets) are produced by manufacturing facilities, whose production processes follow strict regulations. This includes quality control and safety procedures to ensure the medications used by consumers are actually what the label says they are.  

But what about patients who want to save money from rising medication costs and hear about an online recommendation to make their own medication for a fraction of the cost? What if they read about an alternative supplier selling drug ingredients that can be combined to make a medication? Individuals may try to “do their own thing” and produce “cheap medications,” versions of drugs like epinephrine self-injectable products (EpiPens) or the antiviral drug sofosbuvir (Sovaldi) to treat hepatitis C.  

As prescribers, it’s key to understand the risks and educate patients about them. This practice may result in insufficient doses or doses higher than intended, wrong medications used, or contaminants leading to infection or other harm. Drug manufacturers and compounding pharmacies adhere to requirements that include environmental control, cleaning practices, compounding techniques, stability studies, and reliable suppliers. Further, for medications that are injected, there are additional factors to maintain sterility, which heightens the risk of harm if one were to alter or attempt to make an injectable medication. The safety checks in medication production would be bypassed if one were to “DIY.”  

But clinicians can’t suppress patient autonomy. Patients are motivated not only by cost savings, but by bottlenecks/shortages in the healthcare system, a sense of increased medical freedom, and self-empowerment, fueled by social media. In many ways, this is like the situation with over the counter (OTC) medications and complementary/alternative/herbal medications. But just like OTC and herbal products, it’s important to know if your patients are taking these. We recommend asking patients, as part of medication reconciliation at each visit or hospitalization, “Do you take medications that you get without a prescription, or from a non-traditional source, or that you dilute or otherwise change?” That would cover OTC and herbal products, those produced outside of the typical pharmacy pathway, and those altered by the patient.  

Finally, here are a couple of articles you may find interesting: 

“An anarchist is teaching patients to make their own medications: The goal is to build a DIY movement to undercut high drug prices.”  

“Is DIY medicine here to stay?”  

This piece expresses the views solely of the author. It does not necessarily represent the views of any organization, including Johns Hopkins Medicine.