Mothers Continue to Fight Clozapine Negligence
- The Angry Moms
- May 11
- 3 min read
We dedicate this Mother’s Day to The Angry Moms. Years of hard advocacy exposed and ended the FDA’s dangerous clozapine REMS program. Now we must fight for clozapine education, competence, and an end to devastating clozapine discrimination.
On March 15th, 2025, a Florida teen with schizophrenia stabbed himself nearly 30 times. He had accidentally thrown away several doses of clozapine. The pharmacy refused to replace the missing pills, so he lowered his daily dose. One week later he was overcome by severe psychosis symptoms that caused this extreme episode of self-harm. While hospitalized for the incident, doctors removed him completely from clozapine, telling his family clozapine is only given as a “last resort” and “the protocol does not call for it if he’s under 18.”
On April 1st, 2025, a clozapine patient in Texas was rushed to the emergency room following a physical collapse. This young man spent years in institutional settings until he was finally treated with clozapine, which allowed him to return to his family. A few days earlier, the outpatient psychiatrist had increased his fluvoxamine by 50mg. The doctor was unaware that this change could dramatically amplify this patient’s concentration of clozapine to the point of toxicity. A serum level of clozapine measured more than 12 hours after his last dose registered over 3,800 ng/mL. This is 3 or 4 times the toxicity threshold. No doctor affiliated with our community has encountered a level this high in a living patient.
On May 8th, 2025, an Arizona caregiver emailed The Angry Moms, concerned because a hospital psychiatrist had given her son 100mg of clozapine as a starting dose, with a planned increase to 150mg on day 2. Yet, the clozapine package insert lists a starting dose of just 12.5mg. Our initial response was that this was likely a miscommunication and that she’d been told the incorrect dose or medication. Unable to reach the psychiatrist, the mother continued to ask questions. The nurses confirmed that indeed 100mg of clozapine was the initial dose given, telling the mother, “This is normal dosing, and this is a very good doctor who knows his medications very well.” The mother persisted, escalating her concerns to the on-call physician, the hospital medical director, the regional behavioral health authority, and the local Medicaid office. By the time this mother’s fears were confirmed; her son had been given both the 150mg clozapine dose on Day 2, and a 200mg clozapine dose on Day 3. Healthcare authorities have intervened and discontinued the potentially lethal initial doses of clozapine.
This persistent mother – not a doctor, not a nurse, not a pharmacist – may have saved her son’s life. Among our clozapine caregiver networks and social media groups these are common stories. Clozapine incompetence is widespread, dangerous and unacceptable.
As mothers of individuals with serious psychiatric disorders, we have little support in a broken system where jails and mothers have become the new asylums. We carry a great unpaid burden for society, caring for the most vulnerable and keeping our communities safe. Yet, we frequently endure incompetence and disrespect from psychiatrists, nurses, pharmacists, insurance companies and healthcare administrators. Some are well-meaning, some are not. Many employed in healthcare are simply exhausted. This is not an excuse for ignorance.
We hope you and your loved ones are safe this Mother’s Day.
The Angry Moms
As a friend and family member of folks with schizophrenia, learning about how REMS and how it affects folks in need of life saving medication, I don't see how it isn't beneficial to governmental agencies to support people in need of REMS elimination. My uncle nearly died from getting lost and walking onto a highway due to lack of medication. Anyone with a pulse should feel moved to remove barriers to any life saving medication. A friend's son is in need of policy change too.
Just attended a heart-breaking Zoom meeting with two moms that are still suffering so much. Grieving the loss of their adult sons that are still alive, but gone in so many ways. Neither have been able to convince their sons' doctors to try clozapine. Both have witnessed multiple failed attempts of other anti-psychotics. Decades of torment and suffering. All due to ignorance and misinformation about clozapine. SOOOOOOOOOOO unfair and cruel.
The lack of education, preconceived ideas from REMS, and resultant hesitation of MHPs to treat effectively with clozapine continues to be a hurdle for my LO. His PNP continues to seek guidance from her psychiatrist, who has very little experience with clozapine, rather than to consider thé protocol offered by the providers who have made it their life’s work to understand clozapine’s mechanism, it’s optimal protocol in dosing and treatment of side effects. Because of this, my LO has not increased his dose (which is not therapeutic) in over a month. Additionally, we are still only able to get a week’s supply even after 6 months of healthy ANC count. So while I’m grateful that we even get to…
I spoke with the psychiatrist and asked if my LO could be started on clozapine. My LO will not do the blood draws. I asked about the use of a finger stick device instead of blood draws. He said the corporate office does not approve the use of the finger stick device. I said that's a barrier to getting my LO the gold standard help for his SMI. Previously, the psychiatrist told me that my LO is treatment resistant and would benefit from clozapine.
Clozapine, for my son took away suicidal ideation, and it took away violence, and it took away the extreme paranoia that he was experiencing and it’s the only medication that’s worked. like a lot of us my son went three years on Wrong medication 10 different antipsychotics and none of those worked so I believe that the Clozapine will work.