A friend’s son has EoE (eosinophilic esophagitis) which requires frequent endoscopies to monitor the disease and treatment. Her son had a hard time recovering from his last scope and anesthesia but she had no idea why. Why was this time so different than the previous 10+ scopes?
The Hidden Drug Shortage
This article, “Drug Shortages Forcing Hard Decisions on Rationing Treatments“ from the NY Times, provides insight into why her son had a harder time recovering from a routine surgery he’s had many times before. It is likely that the doctor used a different combination of medications during the surgery. But wouldn’t they mention it if they used a different medications or protocol?
The American Society of Health-System Pharmacists currently lists inadequate supplies of more than 150 drugs and therapeutics, for reasons ranging from manufacturing problems to federal safety crackdowns to drugmakers abandoning low-profit products. But while such shortages have periodically drawn attention, the rationing that results from them has been largely hidden from patients and the public.¹
Surgery is not the only place where medications are being substituted or prescription strength/duration altered due to shortages. These shortages suck but what is really awful is that the patient isn’t even aware that the doctor is making changes. Yet these changes may affect control of symptoms, treatment efficacy and whether they live or die. This is especially critical for patients dealing with allergies, intolerances, reactions or diseases with contra-indicated medications.
Studies have associated alternative treatments during drug shortages with higher rates of medication errors, side effects, disease progression and deaths. For example, children with Hodgkin’s lymphoma who received a substitute to the preferred drug had a higher rate of relapse, researchers found, and adults with a genetic disorder called Fabry disease had decreased kidney function when their medication was cut by two-thirds. One alternative guideline adopted during a shortage of intravenous nitroglycerin “was downright scary from a clinical perspective,” according to Dr. Nicole Lurie, a senior federal health official.¹
The Paternalistic Model
The crazy thing about this situation is that the medical establishment feels that it is not important or appropriate to share this information with the patients – the people who are directly affected by this!
Really!? You don’t think that we have a right to know when it is our health and life at stake?
Physicians say that many of the changes they are compelled to make appear to do no harm. But, they acknowledge, typically no one is tracking outcomes in patients who get a drug and others who get a substitute or delayed treatment.
Doctors and hospitals often do not tell patients about shortages and the resulting rationing because they do not want them to worry, especially when alternative drugs are available, or because they feel it would stir up too much anger.
Dr. Ivan Hsia, an anesthesiologist in Ontario, Canada, said many physicians in his field adopt what he called “the paternalistic model — like I’ll inform them when I think it’s unsafe enough to inform them.”¹
Doctors and institutions are left to make the decisions without standard criteria or oversight. There is no big plan on how to ration or who is most worthy to get a drug in short supply.
At medical institutions across the country, choices about who gets drugs have often been made in ad hoc ways that have resulted in contradictory conclusions, murky ethical reasoning and medically questionable practices, according to interviews with dozens of doctors, hospital officials and government regulators.¹
My heart goes out to the doctors put in this ‘no-win’ situation. It is a heavy burden to decide who will get treatment or how much of a medication will be good enough when there isn’t enough to provide the recommended dose. Yet, patients deserve to know when these types of decisions are being made and be an integral part of that decision making.
3 Steps to Keep You and Your Family Safe
What can we do to keep ourselves and loved ones safe during the drug shortages?
1. Talk to your medical team and ask questions about any medication prescriptions. Ask about the risks, side effects and expected benefits of each medication. If going into surgery, get specific details on medications that will be used for the anesthesia. After surgery, check in and ask if there were any unexpected changes or alternative medications needed during the surgery.
2. Know your medical history, including medications that have worked well, and especially those medications that you have had issues with. Bring with you a list of these medications to use during your discussion with your doctors and medical team. Give specific details of the types of problems that have occurred using the medication in the past, plus any contraindications you have, such as allergies, medication interactions or concerns relating to a diagnosis. Where appropriate, have this information prominently added to your medical record.
3. Research and learn about medications prior to starting a new prescription. You know your body, you have lived the history contained in your medical records. Research and understand why you are taking each medication, it’s possible side effects and expected benefits. Ask your medical team what other options are available for treatment. Talk to patients dealing with the same diagnosis to learn what other medications and treatments are being used to treat it. Question your team if there are discrepancies in your prescriptions vs. accepted treatment dosages or duration.
Drug Shortage Resources
The FDA keeps a current database/list of drugs in short supply plus you can sign up to get emails about shortages. The American Society of Health-System Pharmacists
Interesting document on Drug Shortage Statistics from 2001 to 2015