Table 1 Barriers to MOUD retention and exemplar quotes from medical providers for AYA with OUD

Patient-level Barriers

Return to Substance Use

Participant #2: “It’s been complicated with her. She had one relapse while she was on the suboxone. She had come to us on suboxone, and so she was getting it on the streets. Technically, it was like a restart. Then we did kind of lose her to care for a couple of months when she did have a fairly significant relapse on heroin, ended up in the hospital, needed Narcan. And then came back to us after that, reached out to our clinic. And we then restarted her suboxone.”

Participant #3: “This is a guy who is very conflicted and hates having to make a decision every day about whether to use illegal drugs or not. And Sublocade felt right to him that he would not have to make that decision every day. He had been thinking about it for a long time. We actually had it in our fridge with his name on it, because he had said he wanted it months ago but then changed his mind when he admitted that he had slipped up and started heavily using Xanax again and that he had totaled his car and that he was now homeless, because his girlfriend had kicked him out. There was a lot of drama around the relapse with the Xanax.”

System-level Barriers

Cost

Participant #10: “He pays out-of-pocket for his medications. For patients where cost is an issue, tablet form of generic suboxone is ideal. He was on films, but for cost we switched to tablets. Also he had been—I had tried to dose him higher in the beginning, he was up to 20 mg, not really 24, partly because of cost. And he stabilized at 16 mg, he takes it one time a day and he’s able to afford that.”

Participant #12: “There are definitely people who can’t get the medications, or can’t afford it, or it’s a huge burden for them to pay for their medication. I would say for vivitrol, that’s the biggest thing. That’s a huge reason why a good portion of my patients want vivitrol but can’t get it because of the cost. Suboxone, I think, tends to be easier and more covered, but there definitely are people that I have that are paying up to $50 a week. And if they really understand how important it is, they’ll prioritize that. But that money is kind of getting pulled from childcare, or food, or educational, saving goals they have… rent.”

Participant #15: “We help patients get on state Medicaid for the most part, so most of them don’t have insurance issues. We have good relationships with other pharmacies where if they’re on buprenorphine/Naloxone films or tablets they’ll like float costs for a month if they lose insurance. That’s not something we can do with Sublocade, and I do kind of let people know that if you get a job and you get private insurance, it’s going to cost more, or if you lose insurance it’s not something that we’re going to really be able to float.”

Delayed Receipt

Participant #1: Usually when someone decides they want to go onto Sublocade, we say, okay, that sounds great. We will order it. We will see if your insurance covers it. We will get it shipped here to the office, and we can have it here as soon as two weeks. It’s almost never the case that someone comes in for the medication and it’s sitting there waiting for them

Participant #13: “A big struggle for us was prior authorizations. We would prescribe for the first time for a patient, they’d never been on a medication before and then they would go to the pharmacy, they’re ready, we’ve got them at the perfect level of just slightly withdrawing and then the med needs a prior auth and then you have to wait to try and get it approved.”

Pharmacy Challenges

Participant #10: “We have so many problems with pharmacies, countless problems. And this particular pharmacy, yes, has said, we don’t feel comfortable doing this. And I call them and say, she, this patient, doesn’t have a driver’s license, so transportation to pharmacy was a barrier and she can walk to this pharmacy. And it’s her only option and therefore, I need them to help. And so they continued to dispense, but yes, they cause—a lot of times they say, oh, we don’t want to fill the meds because we think she’s using because she’s buying needles when she’s picking up her suboxone. And we say, okay, well great, she’s using clean needles and she’s—maybe she’s giving them away, we don’t know. And it’s like, either way, that’s our job. It’s definitely a barrier.”

Participant #11: “Pharmacies have what they call, caps, where they won’t take on any more patients because they already—they’re saying that they are capped by the pharmaceutical companies on how many patients they can have that are filling suboxone or generic formulations, apparently it doesn’t matter. I ran into an issue today where they said that their patient lived outside of the town limits.”

Participant #14: “There are a lot of community pharmacies where they don’t—cutting films is a big part of prescribing and if you have to micro-dose somebody or if you have to adjust their dose so that they feel comfortable, cutting films is a part of that, that’s how we tell people to take their medications. And there are plenty of community pharmacies who actually refuse to fill a prescription because we wrote anything about cutting a film on the prescription itself. So we have to send over these prescriptions for films and then write out detailed instructions for the patients, which I don’t think is the safest way to prescribe, it’s much better to just have it all consistent across the board. I think that would be another barrier, because there’s a lot of pharmacies that don’t feel comfortable giving a patient instructions to manipulate the films in any way. Even though cutting the films is a standard part of prescribing.”

Participant #16: “I also have had multiple patients who have issues with their home pharmacies regularly causing them trouble with their buprenorphine scripts, which I find very annoying. Honestly, our patients lead pretty chaotic lives and so it will happen with some regularity that a patient will—not usually the same patient but a patient at some point will write in and be like, I was on the bus on the way home and I got off the bus and I got mugged and they took all my buprenorphine, which probably did happen. They’re not making it up. They live tough lives. But then, even if I write a refill script and the insurance company might even be willing to authorize the override, then their pharmacy will be like, well, this is shady, we’re not going to refill their scripts early. And my philosophy on that is like, who cares? If there’s more buprenorphine out in the world, so what.”

Requirement for In-Office Visits

Participant #10: “I know for the last patient we were discussing, in terms of his treatment, for him telehealth treatment was really important because for him finances and getting to a treatment and maintaining his job, that was really important to him. It’s difficult for patients to do both, right? We get them functionally back to work and then it’s a lot to ask them to drive and go far away to a treatment.”