This essay chronicles all I’ve done over the past 6 or so months to obtain my prescription medications, and then gets into a couple of other related issues concerning healthcare. I hope it helps others find answers when they realize they’re unable to get a prescription filled in a timely manner. I never knew it could be so complicated or that I’d learn so much about the ins and outs of the pharmaceutical industry until my medication was placed on backorder from the manufacturer for a 6-9 month period of time. I was suddenly unable to fill my prescription and given no answers about what to do next. Following are the steps I figured out and followed, and an account of how my self-advocacy has gotten even more difficult after my medication was made available again.
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I am so frustrated right now. I have been trying to refill my prescription for the last two weeks. I have to refill it every 3 months. I still don’t have what I need or any real answers about when my pharmacy will be able to obtain it for me. To give a little context here’s some background: I’m transgender, meaning I’m medically diagnosed with Gender Dysphoria, and I take hormone replacement therapy. I’m on Testosterone Enanthate weekly. I take Testosterone Enanthate rather than the more popularly prescribed Testosterone Cypionate because I have a pretty intense allergy to the Cypionate version of the drug. Taking it results in head to toe itchiness for almost a full week after each shot, a constantly runny nose, sensitive and runny eyes, mucus producing lungs, near constant exhaustion, a shiny swollen and pink puffy face, and a slight paralyzation of the right side of my face occurred over the time I was on it. With each shot my symptoms grew worse. That’s what happened over the course of a 3-4 month period I was on Cypionate when I first started hormone replacement therapy. Since switching my prescription to Testosterone Enanthate I no longer suffer any of these symptoms and I’m happy to say that my face looks normal again.
Testosterone Enanthate has been on backorder from the manufacturer for something like the past 6-9 months. I have no information about why it was on backorder for that time period. The manufacturer of this medication is Hikme Pharmaceuticals (1-877-845-0689). I called Hikme a few weeks ago to get to the bottom of this backorder problem and was provided no answers as to why. I was instead informed that it’s no longer on backorder, and Hikme is currently filling orders and sending them out as requested… so why am I still not able to find a vial of this medication near me in the State of Rhode Island weeks later?
Starting at the beginning, what happens when you need a prescription filled but it’s out of stock at your pharmacy?: Usually when I need a prescription refilled I simply notify my pharmacist and it’s filled within a couple hours or so, ready to pick up. I currently use CVS Pharmacy as there’s one near my house and I do not have a car. If my refills have run out (every third time I order), I’m informed by the pharmacy that I have to ask my Doctor to call them with the new prescription. So I call my Doctor in order to make that connection happen. It’s a little annoying, but not the end of the world. Usually within a day or two my issue has been resolved. My Doctor at Thundermist Health approves the refill, and their technicians or a nurse sends the script over to my Pharmacy for them to fill, and for me to go pick up.
For the past 6 months whenever I’ve had to refill my prescription, I call CVS as usual, and they say they’ll let me know when I can pick it up. Sometimes I don’t get contacted, and I end up remembering about a week later that I haven’t heard from them. I call CVS again to follow up, asking what the hold-up is. About 6 months ago at this point in the process I was informed that the medication had been ordered because they were out of it, and they’d let me know when it came in… A week passed again, and after not hearing anything I called back to ask when the order was supposed to arrive. During this call I was informed that my medication was on backorder from the manufacturer. I really wish I’d known this sooner, because at that point I was on my last dose. I worried about how long it would take to get my prescription, which was also stressful because Testosterone is supposed to be withdrawn from slowly by reducing your dose over a period of time.
I asked what I was supposed to do with that information, and was told that I can try to find another pharmacy that might still have my medication on their shelves. Annoyed that I could have been searching for pharmacies two weeks prior, I went about calling pharmacies. I called every pharmacy I could find in my area, and then beyond, until I found one who still had a vial of the medication. So, now I knew where I could obtain my medication, however that pharmacy doesn’t have my prescription because my home pharmacy has it. Testosterone is a controlled substance and they cannot transfer my script from one pharmacy to another—even between stores within the same company. The first time I found a pharmacy with my medication on hand it was a 30 minute drive away. Luckily I was able to borrow my roommate’s car for an afternoon to pick it up. This time around I’ve had to call out of state to find it, and I don’t currently have access to a car.
Let’s back up a minute though…
Each time I find a vial of my medication at a pharmacy which is not my home pharmacy, I have to call my Doctor’s office and have her forward my prescription to the new pharmacy once I’ve confirmed they actually have the medication on hand. Confirming is important, as sometimes their inventory says they have it but it’s not actually on the shelves, and even if it’s on the shelves I’ve found stores stocked only with medication that’s expired. So, after confirmation I call my Doctor’s office and speak to the receptionist, who gives my Doctor the message that I need my script forwarded to the new location. It takes a day or so for her to sign off on the prescription usually. After my Doctor writes the new prescription, I’ve been told by the receptionist that the prescription is sent to “technicians” (and/or Nurses?) at Thundermist who actually send my prescription to (hopefully—and not always) the correct pharmacy. This procedure is supposed to take 24-72 hours. As of my last trip through this process, it took an entire week including two days of calling back and forth between the pharmacy and my Doctor’s office multiple times for it to actually happen. This time, even after my doctor’s office called the prescription in, it turned out that because I could only find a pharmacy out of state, the Doctor had to fax the prescription to the pharmacy instead of call it in. I checked in with Thundermist after being told they had to redo my order, and was assured they’d get to it quickly… When I checked the pharmacy a couple hours later it still hadn’t been done. I called, ping-ponging between these offices at least four times that day trying to actually get it done. Unfortunately that day happened to be the last day I had access to a car in order to get to the pharmacy I had found in Massachussetts, and even though I explained my situation to multiple people at my Doctor’s office, I was not able to get it done within the timeframe I needed to. It’s filled, but now it’ll be a bit before I can actually pick it up. This is exactly why I give myself extra time when I fill my meds.
So ok, the pharmacy finally got my scrip correctly. At this point the pharmacy is supposed to fill my prescription and call me letting me know to come in and pick it up. Sounds easy, right? Well, so far I’ve frequently not been called by the new pharmacy once they have my script. I make more followup phone calls and finally I’m told I can come pick it up. The last time I went through this song and dance and was finally told it was ready for pick-up, when I went to pick it up the next day (in coordination with my car situation and availability), and after an hour of driving I was informed that my prescription wouldn’t be ready until the next day because the pharmacist couldn’t get to it right then*… ?! I let them know I was supposed to be able to pick it up the day prior, and that I wouldn’t be able to get there the following day. The person at the window grumpily said she’d look into it, and all of a sudden the vial of medication was available.
*A thing to note about Testosterone Enathate is that it comes in a glass vial, 100% ready to administer from the manufacturer. It is not compounded or altered in any way at the pharmacy when I pick it up.
Ping-ponging between my Doctor and the pharmacist, and calling around to every pharmacy I can find is usually as far as I have to go looking for my medication. This most recent time it went a bit differently though.
Pharmaceutical Manufacturers: As I mentioned earlier, this time when I buckled down to find the medication I need, I was nervous I wouldn’t be able to find a pharmacy who carried it at all, or one within my means of travel. I was also worried that because I’d come across an expired lot at one pharmacy, that maybe all Testosterone Enanthate I could find would soon be unviable. I started asking more questions. I asked my pharmacist why the medication had been on backorder for so long and if they had any idea about when it would be available again? I was told it was on backorder from the manufacturer, and that’s all my pharmacy knew.
I took this information and did some sleuthing online. I found the manufacturer of Testosterone Enanthate: Hikme Pharmaceuticals. I called them asking why my medication had been on backorder for so long, and when it would be released again. I was given no answers about why it had been on backorder. I was told though that, yes, it had been unavailable for a long period of time, but that it had just recently (within a week or so it seems to me) been put back on the market and they were filling orders as they got them. Great news, right?! Well…
I called CVS back to inform them of the updated situation. They offered to start actively ordering my prescription for me again (something I didn’t know they had stopped doing). They said they’d put an order in for me and that order would be repeated each day until it was filled. I thanked them and waited… and waited… and waited… Spoiler Alert: I’m still waiting.
A couple weeks went by without any word from CVS or any notification to come pick up my medication. I called and asked about the order they said they’d placed, and they confirmed that they’d been ordering it daily, and that their distributor was still saying that the manufacturer wasn’t filling orders. So I called Hikme back. I was assured that they were filling orders and sending out Testosterone Enanthate to everyone who ordered it, including CVS’s distributor, Cardinal Health. I found this curious, wouldn’t you?
So what’s up with Cardinal Health?: Of course I called Cardinal Health. They were the least helpful company I spoke with in this ordeal. Since I did not have an account with them they were unable to speak as to why CVS’s order was not going through. They tried to tell me that the drug was backordered by Hikme, and when I told them I had spoken directly to Hikme and that was no longer true, they told me they’d investigate further. I waited a few minutes, and was told at that point that I was correct, and that they were filling orders for Testosterone Enanthate, and they couldn’t tell me anything about their account with CVS… So back to CVS again.
Is this specifically a CVS problem or is it Cardinal Health’s, the distributor’s, deal? Or is there another option I don’t know about that no one is being the least bit upfront about?: After what seemed like my 50th phone conversation and follow-up of the day, I was informed that CVS’s distributer, Cardinal Health, is “allocating” shipments of the medication to CVS stores who have a “high demand” for the medication. Apparently because my store hasn’t carried it for a while (due, I assume, to the facts that it’s been on backorder from the manufacturer until very recently and I’ve been sourcing it from other stores in the meantime, and Enanthate is not the most common form of this medication—used by many fewer patients), I suppose my store is not considered a “high demand” location. To get this medication sent to my store, the pharmacist at CVS has to file an appeal with CVS’s “Care Team” and their distributor, Cardinal Heath. I’ve been told filing an appeal entails a number of steps starting with my Doctor formally writing to CVS stating that I cannot use another form of testosterone other than the one she’s prescribed, Testosterone Enanthate. At that point the CVS Care Team will decide whether or not to fill my prescription and (hopefully) send my pharmacy the medication they’ve supposedly been requesting for me every day over the past couple of weeks. I decided that rather than trust CVS and Thundermist to speak with one another about this process I would call and make sure my Doctor had everything she needed to advocate on my behalf. Unfortunately I’ve been informed by Thundermist’s front desk that my doctor is out of the office and won’t be back for another week. [Insert silent internal screaming!]
My resounding question for this circle jerk of a process is, why?! Why does a prescription of mine need to be defended to a pharmacy? If my Doctor has prescribed Testosterone Enanthate to me, why does she need to back that prescription up with any other information? Doesn’t this bleed into the realm of breaking Doctor/patient confidentiality? If a pharmacist requests medication from their supplier in order to fill a prescription that’s been called in, why would the corporation that owns that pharmacy stop it from being sent to the store requesting it? Even further, why would a distributor of the medication have any say whatsoever as to which stores receive the medications they have prescriptions for? What’s actually going on here?
I’m unclear about whether CVS, the larger corporation, is having a hard time obtaining my medication from Cardinal Health without this appeal process in place, or whether the issue lies mainly with CVS’s “Care Team” deciding whether ot not to distribute medications they already have to my particular location. All of this is a ginormous headache, and as a patient I should definitely not be making this many phone calls in order to receive the care that I require, the care that my doctor has prescribed, the care that my insurance covers, and the care that I need to remain healthy. In the tired sounding words of my pharmacist (tired I’m sure because she was sick of speaking with me), “It shouldn’t be this hard to get a medication”.
I concur.
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A note about compounding pharmacies: When a medication is unavailable by normal commercial means or it needs to be altered in some way in accordance with a person’s allergies, or to obtain a less common dosage requirement, etc., one can often find a compounding pharmacy available to make a small batch of the medication for that patient’s use. When I first became aware that Testosterone Enanthate was out of stock from the manufacturer I called all of the compounding pharmacies in Rhode Island I could find and was either informed that they were not able to compound testosterone medications, OR (in one case) that they had discontinued compounding testosterone in accordance with a request from the FDA for them not to?! When I pressed further I was told that because testosterone is a controlled substance they were under pressure to comply unless they wanted their pharmacy to be under heavy surveillance and suffer potential complications with their license. If this is true I can’t imagine this isn’t a game the FDA is playing on behalf of big pharma…
A note about syringes: My insurance just stopped covering syringes for my injectable medication. When I spoke to someone from the insurance company they did mention that they cover needles for diabetics… but that’s an advocacy for another day as I just simply cannot right now with another thing. Luckily for me I teach BDSM needleplay skills and safety, so at least I know how to order my own and they’re not that prohibitively expensive at the moment.
A note about blood transfusions: If the idea of pharmacies and our government being queerphobic or transphobic surprises you at all, please recall that prior to 2015 all men who had sex with men were banned for life for donating blood. These days, since 2015, as long as a man promises to be good for Uncle Sam and abstain from sex with another man for 12 months they should become eligible to donate once again. A friend of mine accurately retorted, “So if I’m in recovery from my faggotry I can donate? How open minded of them. 🙄.” Right now there’s a type O shortage in the country. Type O is the most commonly used blood in emergency rooms, as it’s the only type which is compatible with every other blood type, though people who are type O can only receive type O themselves. Only 7% of the population has type O. I’m O+ and there are numerous reasons I cannot donate according to the Red Cross and the FDA.
- I find it interesting that donors now report gender on their form, which seems to indicate that FTM trans people who have sex with “men” (I’m not sure what exact definition the Red Cross uses for this word considering it’s a gendered word and not a sex designation) are included in the man-on-man sex disqualification list. I’m not sure where that would leave trans women who have sex with men or other trans women, as it doesn’t say whether the donor identifies their sex on the form. Therefore, depending on how and if the agency reports the donor’s sex, that may be a disqualifier too. I’ve had one trans woman tell me that if a trans woman reports having sex with another trans woman it’s at the discretion of the interviewer as to whether that person qualifies or not, and if they’re rejected they have to wait another 12 months to try again.
- I find it interesting that under the Hormone Replacement Therapy (HRT) section of the Red Cross’s blood donor eligibility page they write, “Women on hormone replacement therapy for menopausal symptoms and prevention of osteoporosis are eligible to donate”. There’s no mention of trans people at all. Does this mean all trans people on HRT are disqualified? How about post-menopausal women on testosterone for low libido? How about men on testosterone for low libido? How about men on estrogen for low libido? How about weight lifters?
- I find it interesting that if you’ve ever accepted money, drugs, or “other payment” for sex you are banned for life instead of having to wait a year like everyone else to “re-qualify” for blood donation.
- I think it’s interesting that if you’ve ever taken intravenous drugs without a prescription you are also banned for life.
- I find it interesting that if you’ve been in jail for 72 hours you have to wait a year to donate blood because you’re considered a higher risk for carrying HIV/AIDS or Hepatitus. This of course targets people of color, as black men are incarcerated at 5 times the rate of white men, and black women at twice the rate of white women.
- I find it interesting that the common answer for why these groups of people are not eligible for donation is that they’re a higher risk for HIV/AIDS or Hepatitus, yet all blood donated is screened for each of these, and only some of these people have to wait a year to be “cleared” to become eligible again, while others remain excluded for life…
- I find it really interesting that if you’ve been raped or sexually assaulted you don’t have to report that to the feds or Red Cross before they decide whether your blood is good enough to take. Why is that United States FDA? Does it seem wholly unfair to target innocent people who have had bad things happen to them, yet somehow extremely important to target those who live on the outskirts of what society deems “normal”?
- I think it’s interesting that you don’t have to have been tested for STIs recently, or even in the past year for your blood to be accepted for donation (especially considering that most of the queer people and sex workers I know get tested more regularly than the general population).
A note about Truvada and the cost of keeping HIV and AIDS at bay: Recently Alexandria Ocasio-Cortez confronted the CEO at Gilead (the maker of Truvada, which is the most commonly used PrEP medication), about why a month’s prescription of the drug costs $8 in Australia and almost $2000 here in the United States? The medication was funded with US tax dollars, is owned by US Citizens, and yet has been privatized for multi-billion dollar profits taken directly out of the pockets of US citizens. This line of questioning only begins to raise questions about pharmaceutical and medical industry ethics. According to the CDC, of the people who are offered and fill prescriptions for PrEP, only 4.7% are women, and of that percentage 68.7% are white women, even though at least 68.4% of female patients who are indicated for PrEP are women of color. Similarly, though 52% of HIV diagnoses occur in the South, only 27% of PrEP users are located there. For years reports about who has easy and affordable access to PrEP have shown huge discrepancies concerning the populations most in need of it. This is just one of the ways we can choose to notice the layered realities of being part of an underserved community.
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Why is it like this? Is all of this about queerphobia and transphobia? Is it about bottom line discounts and profit margins for lesser used medications? Is this about controlling the health and resources offered to people on Medicaid and other low income patients? Is this about big pharma getting to decide who can provide which medications at what price point?
I’m exhausted. Advocating for my needs on top of everything else going on in the world makes me feel as though my body and my freedoms are personally under attack. Maintaining a prescription I’ve been on for 2 years running should not be this much of a drain on my energy. I’m glad that I can find time to research, advocate, and fight. I’m stubborn enough to continue asking questions, and I’m a good enough communicator to not completely turn off everyone I need to interview over and over again throughout this process. I’m lucky in these matters and many other people are not. I hope that if anyone finds themselves in similar circumstances that my recounting will help them know which questions they can ask, and will help shorten their own self-advocacy process.
I loathe the United States’ systems of hetero-fascist anti-queer mysogynistic and racist policies informed by what can only be explained as mountains of ignorance and deeply rooted bigotry. When those systems are placed within the medical sphere of influence though, it ends people’s (read: demographics of peoples) lives. We must pay attention. We must fight.
Play On My Friends,
~ Creature
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