Starting around the end of February 2024, several clozapine patients began receiving surveys in the mail regarding the clozapine REMS.
The survey, which features the current Clozapine REMS trademarked logo, appears to be a collaborative effort between Walgreens drugstores and the Clozapine REMS agency. As of yet, members of our community have not received notices from pharmacies other than Walgreens. The survey offers a $25 incentive for participation.
While the survey does ask a few important questions – The Angry Moms are shocked by blatant omissions, misleading questions, and the misinformed priorities of the survey.
The survey begins by asking “Which of the following can occur when taking clozapine?” with one correct answer pertaining to a drop in neutrophils, called neutropenia. The next question similarly asks the participant what can happen if neutropenia occurs, with the correct answer being “serious infections and death.” This is followed by questions asking the participant to identify neutropenia-related conditions from a long and disturbing list of symptoms.
This survey appears highly concerned about the less-than-half of one percent of patients that develop severe clozapine-induced neutropenia – a condition that itself is wholly reversible and rarely fatal. The average caregiver is terrified at this point – not because their loved one might develop neutropenia, but because they might stop taking the medication.
Do the creators of this survey understand psychosis – in the least? This dangerous condition is associated with irreversible brain damage, violence, and a 5% risk of suicide. Suffering individuals have poor insight, impaired cognition and are highly prone to medication non-adherence. Not only are patients at risk, but caregivers, families, and the general public are as well.
Are pharmacies sending out similar fear-inducing surveys for medications that treat dementia? For thyroid or epilepsy medications that have 10 to 100 times higher risks of neutropenia compared to clozapine?
One of the worst things that can happen to a clozapine patient is that they stop taking their medication. Most will experience rebound psychosis and cholinergic rebound – with dangerous consequences that far outweigh the minuscule risks of clozapine-induced neutropenia.
This brings us to an even BIGGER problem with this survey.
The survey goes on to ask the participants questions to see if they understand the program’s blood testing requirements and then closes with questions collecting basic patient demographics. The Angry Moms are dumbfounded by the sorely missed opportunity to ask the REAL questions pharmacies and contracted agencies should be asking patients:
Do you know what to do if you run out of medications?
Do you know what to do if the pharmacy refuses to dispense your clozapine prescription?
Your pharmacist might choose to dispense only one week of clozapine at a time; do you have a plan to ensure you have access to both a lab and a pharmacy each week without delay?
Do you have at least 7 to 10 days of additional clozapine on hand for emergencies?
Do you have a safety plan in place in the event your medications are interrupted?
Do you know the symptoms of rebound psychosis or cholinergic rebound?
Among thousands of members, The Angry Moms has encountered only ONE non-fatal case of true clozapine-induced neutropenia. The condition is that rare. We have encountered more cases of neutropenia with other medications, notably Depakote. Yet, each month, we receive dozens of reports of clozapine interruptions, dangerous weekly pill rationing, blocked prescriptions, untrained pharmacists refusing to dispense medication, and doctors and clinics failing to answer the phone or respond promptly to blocked refill requests.
The reality is much worse. True deficiencies in the clozapine REMS program are heavily masked by widespread efforts to maintain a safety stock. Prescribers and families frequently resort to clever means of stockpiling the medication to use during delays in pharmacy dispensing. As usual, mothers and caregivers come to the rescue when the system fails.
The Walgreens Clozapine REMS survey is a misappropriated investment in patient care that is asking the wrong questions. The results will have limited scientific or practical value. Worse yet – the cherry-picked assortment of leading questions will continue to propagate bad science and increase the risks of patient harm. This survey was clearly developed without consulting appropriate stakeholders.
The Angry Moms demand that the Clozapine REMS agency immediately stop their misleading and dangerous patient surveys. We demand that the FDA immediately ban all clozapine pill rationing procedures and authorize emergency doses. No critical lifesaving medication should ever be rationed in weekly quantities. We demand that the REMS Dispense Authorization (RDA) procedure be immediately discontinued, with all pharmacies instructed to dispense clozapine as indicated by the prescriber.
Until these conditions are met, each week The Angry Moms will be publishing raw and unedited stories of negligence, harm, and medication restrictions that continue to affect clozapine patients daily.
Perhaps by giving visibility to the ineptness and dangerousness of the current Clozapine REMS program, we can shed some light on the agencies that are obliviously holding our sickest psychiatric patients and families hostage.
The Angry Moms
