KANSAS CITY, Mo. — In April, Kenny Caldwell walked into a Costco pharmacy in Kansas City to pick up their monthly medication. They walked out empty-handed.
“The pharmacist was like, well, we’re not willing to take that risk. You’ll have to go somewhere else,” they recalled. “It just felt (like) it was very much a trans thing. … I definitely felt like it was against me, specifically.”
Caldwell is a nonbinary person who takes testosterone as part of their gender-affirming health care. But their pharmacist refused to give them the prescription they normally pick up every month, citing the state’s restrictions on dispensing controlled substances.
“I was like, look at me, look at the clinic that (the prescription) is coming from, look at everything,” Caldwell recalls. “It all points to that this is hormone replacement therapy, this is trans health care.”
While the pharmacist agreed that the testosterone prescription appeared to be for gender-affirming care rather than use as a performance-enhancing steroid, Caldwell recalled that she still refused to fill it.
The Costco pharmacy in question declined to comment. An inquiry made to Costco’s corporate offices by The Kansas City Star has not been returned. But Caldwell’s experience is not unique.
The Star has heard from patients, providers and state officials in Missouri who say that several factors, particularly manufacturing changes and a state limit on dispensing controlled substances, has made testosterone harder to obtain in recent years.
These barriers are particularly impacting patients who receive hormone replacement therapy or HRT. This treatment is widely utilized by middle-aged and older adults as well as by the transgender and nonbinary community.
Barriers to access
Patients’ difficulty accessing testosterone in Missouri is due to a combination of two factors.
The first is a statute that allows only a 90-day supply of any controlled substance to be prescribed or dispensed at one time. The other is a recent trend among drug manufacturers to only sell testosterone in vials larger than a single typical dose for many patients.
Testosterone is considered an “anabolic steroid” under Missouri and federal law, making it a Schedule III controlled substance. This classification means that regulations around testosterone in Missouri fall to the state’s Bureau of Narcotics and Dangerous Drugs (BNDD).
Mike Boeger, the bureau’s administrator, estimated that his department receives around 10 calls per month from Missouri doctors and pharmacists about their challenges prescribing testosterone.
“Our situation is really caused by drug manufacturers not making it in small vials anymore,” Boeger told The Star.
In the past few years, he said, many drug companies have started only offering testosterone in single-use 1mL or even 10mL vials. These vials aren’t designed to contain multiple doses, and need to be used as soon as they are opened. Pharmacists can’t give most patients enough single-use vials to last them a month without exceeding the 90-day limit in place in Missouri law.
One nurse who works with HRT told The Star that this issue disproportionately impacts the LGBTQ+ community.
“Most trans people have a T dose that is less than 1mL at a time, whereas cis men who are on hormone replacement usually have a dose of 1mL every two weeks, which is why it is manufactured in that quantity,” they said.
The nurse asked to remain anonymous because they are not authorized to speak on behalf of their employer, a Kansas City health clinic.
Caldwell’s prescription, for example, is for 0.375 mL of testosterone per week, or only 1.5 mL per month. That means they can only legally pick up three times that amount, or 4.5 mL, at a time, because of the 90-day limit. But the nurse added that some pharmacies are increasingly reluctant to dispense testosterone at all.
“Around six months ago, at the same time there was a lot of anti-trans health care legislation being proposed, there was a pushback from pharmacists, especially smaller rural ones, on testosterone scripts,” they said.
They have noticed that some pharmacies now reject testosterone prescriptions that have been written by physicians’ assistants, even if the physician’s signature is on the prescription — normally a standard practice in clinics with high caseloads.
“It’s making it frustrating for the patients and leading to gaps and inconsistencies in care,” they said. They are aware of at least one other patient, besides Caldwell, who has run into the same problem getting testosterone from the same Costco pharmacy.
According to a document shared with The Star, the Missouri Pharmacy Board received 18 complaints in 2021 about “Dispensing Errors” and 36 about “Improper / Unauthorized Dispensing.” The board could not share how many of those complaints were related to testosterone.
It isn’t clear whether some pharmacies’ resistance to testosterone prescriptions is caused by anti-transgender sentiment, trepidation about running afoul of state law, lack of knowledge about LGBTQ+ health care or another reason. The statute setting the 90-day supply limit was last updated in August of 2019.
Three imperfect work-arounds
Boeger frequently advises pharmacists and doctors on how to get their patients the testosterone they need while obeying the 90-day supply law. He usually recommends three workarounds, each with their own set of challenges.
— Prescribing more: Pharmacists can ask doctors to prescribe patients more testosterone than they need so that a larger vial doesn’t exceed a 90-day supply. While doctors have the legal right to do this, Boeger said that many are uncomfortable doing so. This practice can be seen as “overprescribing,” which can expose doctors to scrutiny and possible discipline by medical licensing boards.
— Splitting up vials: Pharmacists can redistribute testosterone from a large vial into smaller vials, allowing them to give out smaller doses. However, this requires a special license called a “non-sterile compounding permit,” which some pharmacists don’t have.
But even the smallest standard vial, containing 1mL of testosterone, is too large for some patients.
In order to ensure each weekly dose is sterile and safe to use, some patients like Caldwell pick up four 1mL vials per month, one for each weekly 0.375mL dose. This raises a red flag with pharmacies, who see a patient picking up far more than their monthly prescribed amount every four weeks.
Even when this amount doesn’t technically exceed the state’s 90-day supply limit, pharmacies are still reluctant to dispense far more than a patient’s prescription directs.
— Office visits: Doctors can administer testosterone shots themselves during office visits, avoiding the need to write a prescription altogether. However, this can be burdensome on patients, who would have to make a new appointment every time they need a shot. For people undergoing HRT like Caldwell, this can be as often as every week.
Could Missouri change its law permanently?
Boeger told The Star that a solution to Missouri’s testosterone access problem could come from Jefferson City. State lawmakers have the power to amend the statute containing the 90-day supply limit and make an exception for certain drugs that are difficult to dispense in small quantities.
“Instead of 90 days, they could say 120 days, 180 days. (They could) allow doctors to write a bigger prescription, and allow pharmacies to dispense a bigger supply of testosterone, for people getting testosterone therapy,” Boeger said. “That way, they would just have to write an exception into the statute.”
A change like this, he added, would likely need to come from the state’s medical associations of doctors and pharmacists, whose lobbyists hold power in the capitol. While individual patients can contact their representatives and even testify to lawmakers about this issue, Boeger predicted that patients alone are unlikely to sway legislators.
“Normally in our world, changing of drug laws and medical care (laws) happens at the capitol from the medical associations, from the doctors and the pharmacists,” he said. “They’re the ones who come in and get things changed, because they’ve got the expertise … but I haven’t heard anything from any of those associations saying, hey, we’re going to try to change the law.”
The Missouri State Medical Association told The Star that it does not have a position on the state’s 90-day supply limit. The Missouri Pharmacy Association did not respond to a request for comment.
The Kansas solution
Following their experience at the Missouri Costco pharmacy, Caldwell began getting their testosterone prescription filled at The University of Kansas Hospital instead. Kansas limits the number of refills allowed on controlled substance prescriptions, but there is no limit on how large each refill can be.
“Generally speaking, there are no limitations on days’ supply in Kansas,” said Alexandra Blasi, executive secretary for the Kansas Board of Pharmacy, in an email to The Star.
But crossing the state line on a quick drive after work isn’t an option for most Missourians. Caldwell recalled that their coworkers on the west coast were shocked to hear about them having to travel to Kansas to access their medication.
“When I told them that I have to go out of state to get my HRT filled, the person in HR was like, we need to start talking about possibly relocating you (out of Missouri),” they said. “(We need) to make sure that you’re in a healthy … state that you can live in.”
