I’ve been trying to figure out how to share this for hours since it happened. I am going to try to write this so that it makes the most sense, but beg your forgiveness if it is a bit disjointed in its presentation. I thought a great deal before deciding to write this post and decided I must share it so that others who may encounter similar situations can know that they are not alone.
I have a wide variety of chronic illnesses including a spinal cord injury, nerve pain, and sleep apnea with idiopathic hypersomnia, which in simple terms is similar to narcolepsy. I share this not for your sympathies, but to give a little background on the events I will detail in this post.
When we think of the stigmatization of patients in healthcare in today’s events and news, we often hear of such stigmatization occurring around either mental health or opiate use (prescription or otherwise), or sometimes even both. Well, today I personally found a new way in which patients who require, yes I said require, certain medications in order to be safe and healthy are further degraded, stigmatized, and worse yet, abused and taken advantage of.
I’m referring to patients who must use properly prescribed drugs such as Ritalin, Nuvigil, and Adderall to safely and properly function. At times I find I need the use of one of these pharmaceutical agents to aid in the treatment of the IH (idiopathic hypersomnia) and by choice, after discussing it with my treating sleep neurologist, decided I only wanted to take them on as an as needed basis in order to prevent the possibility of developing a physiologic tolerance to the medication, which can happen with many medications regardless of their use, and by avoiding tolerance I can use the lowest possible dosage to achieve the desired result.
I frequently use medication discount programs, or apps such as GoodRx in an attempt to make my medication costs more manageable since I have no prescription coverage. While I recognize a retailer’s right to refuse to participate in such a program, what happened to me today strikes me as selective and closed mind decision making on the part of pharmacists. Please allow me to explain.
I went to my local Big Name Food Store’s pharmacy in order to pick up another prescription unrelated to this, and just for the record it was not an opioid for treatment of pain. It is, however, a controlled substance which will become pertinent here shortly. I present my paper prescription to the pharmacy tech and ask if they have the prescribed amount of Adderall in the dosage and quantity prescribed. She takes it to the pharmacist who advises that they do, in fact, have it. I asked if they could please fill it under the same GoodRx info used for the other prescription that was waiting for me to pick it up. Well, here is where things get interesting not to mention downright ludicrous.
From approximately 15 feet away, instead of walking over to the counter where I was standing, the pharmacist informs me that they have decided to not accept GoodRx for any narcotics at this location. For a moment I was simply shocked given the other Rx they had already filled was filled with the GoodRx information I provided to them and nothing was said about it. I had to quickly make a decision as to whether to politely question the rationale and level of management this decision was made at, or to simply accept the unwarranted abuse of power and walk away.
I chose the former and was shocked to hear the reasoning behind it. I started by politely explaining that I was in no way arguing the right of a business to not participate in discount programs such as GoodRx, as that is beyond my level of knowledge. I did inquire, however, as to what my price would be without the GoodRx discount which put the price around $21 for 30 tablets. I was informed that the cash price would be well over $50.
Again, I stressed in a calm, polite voice that I am simply trying to understand so that I can properly share this information with other patients, and I asked if this was a local store policy or a corporate policy of “Big Name” Food Stores. The pharmacist explained that she was unaware if it is a corporate policy or not, but that it was a decision made at this particular store due to abuses of controlled substances they have noted occurring in their pharmacy.
I politely asked to have my prescription back as I could not afford to pay double the price, while I also asked if I could ask her one more question if she had the time. She said yes to both and I posed the question that if, as is my understanding, the Commonwealth of Pennsylvania has the prescription monitoring program in place, why she, as a pharmacist, felt the need to further restrict medications that are being properly prescribed by a physician who is monitoring their care. I was once again informed that the decision was made due to the many abuses of controlled substances that they have seen come through their pharmacy.
First, let me say that it was unprofessional of her to hold the conversation over a distance of 15 to 20 feet as previously mentioned, necessitating her to be loud enough that the women standing right next to me at the window could hear the entire conversation. Secondly, I do not particularly like the fact that I am being stigmatized as an abuser of a medication purely based on its name and no knowledge of my previous prescriptions. If you are going to attempt to police usage of a particular drug or even drug class, then there must be some criteria by which this is done to assure uniform enforcement. It appears to me, in this case, this is an arbitrary decision made by a pharmacist based on what she chose to share with me.
I take this medication so infrequently that my last prescription for it was received on March 9 and I am just now breaking down and trying to fill it because a month ago when I had the money to do so, nobody had any in stock and couldn’t tell me when they would have it. I honestly think this is my first prescription this year for it, but I can’t swear to that without digging through my records but suffice it to say I don’t take it regularly.
However, when I do feel the need to take it I should be able to take it without fear of being further stigmatized by the profession charged with ‘doing no harm’ purely based on others who may have abused medications within the same drug classification system as this medication. I was humiliated by the entire experience and left there thoroughly disgusted, embarrassed, and even to a degree self-loathing the fact that I even occasionally need such a medication.
When we shame the patients for conditions that are not in their control who are we helping? I understand that there is the whole subject of the opioid epidemic in the national spotlight and I’m not even going to touch on the effects that it is having on patients with documentable and legitimate chronic pain. When do we stop attacking entire patient demographics purely based on a pharmaceutical category as opposed to proper medical prescribing and oversight by their physician?
Often medications such as Ritalin, Adderall, and Nuvigil (to name a few) are properly prescribed, and might I add absolutely necessary, for persons with specific sleep disorders, ADHD, and documentable, verifiable, quantifiable reasons that their physician has painstakingly determined is the best, if not only, appropriate course of action for their patient.
I offer that the opioid epidemic seems to have led to another epidemic attacking multiple classes of legitimate patients. When will this stop? Who is supposed to ensure that we don’t get penalized for being ill? When will patients stop being humiliated, and abused by being asked… no, not asked… required to pay more than any other cash customer without prescription coverage just due to the classification of the pharmaceutical regardless of the medical necessity or appropriate use of said medication?
Further, I can’t help but wonder if this policy of increasing drugs cost in a particular class swells over into other drug classes affecting other entire populations of people in the U.S.? When do we as a nation start to fight back against abuses put in place to protect us, by the very people who are supposed to be in healthcare to treat us properly? Who do we even contact to try to educate the people charged with protecting us, that by penalizing us it only makes us want to seek care even less for fear of being further stigmatized and humiliated?
When does it end and how many people will resort to drastic measures to make it stop? When is enough enough? The sad irony that this is a major issue is that I was informed that they used the GoodRx saving coupon on the first prescription which is technically considered a narcotic as well, yet blatantly stated that they would not use it for the Adderall. Weird, huh?
Have you experienced a similar issue? Let us know your thoughts in the comments below.