Breaking Through with Clozapine & Community

When Drs. Robert & Ann Mandel Laitman’s son Daniel was diagnosed with schizophrenia at the age of 15, they quickly learned that fewer than 2% of individuals with schizophrenia in the U.S. get the level of care they need, let alone are prescribed the life-saving medication, Clozapine.  

This month, Help in the Home co-founder, Rayetta Michael, was able to connect with the Laitmans and had a candid conversation with this no-nonsense duo. We hope you’re as inspired as we were by the professional and personal sacrifices this couple has made to redefine what’s possible in the world of schizophrenia.  

Meet the Laitmans

Drs. Robert Laitman & Ann Mandel Laitman are both doctors of internal medicine, Robert being a nephrologist as well. With a former practice of about 2,000 patients, they chose to pivot 15 years ago in the pursuit of helping other families connect to effective protocols and care. Perhaps even more important to note was the profound impact they witnessed firsthand when Clozapine was combined with a supportive community.

Within the last five years, Robert has fully transitioned out of nephrology to continue breaking down barriers for other families like theirs to find care.

The Struggle for Proper Care

Even families with all the resources in the world can struggle to find effective care. During our conversation with the Laitmans, we heard story after story of the sheer variety and at times, the inconsistency in care . In a recent situation, a patient had been misdiagnosed several times over the course of 10 years. After a long road of worsening symptoms and seemingly dead ends, once the patient began a Clozapine regimen under the expertise,supervision, and direction from the EASE Model, this patient’s eating issues resolved, in large part due to the voices telling him not to eat subsiding. Sadly, the Laitmans hear stories like these each and every day.

Next comes the issue of properly training physicians for Clozapine protocols.  When most patients are given this antipsychotic, it’s as a last ditch effort.  It then takes longer for the positive effects to become evident after years of continual neural tissue damage. As the Laitmans pointed out during our call, it’s a delicate balance of slowly introducing Clozapine while weaning off other antipsychotics, which can be too complex and discouraging for brand new Nurse Practitioners, and not profitable enough for seasoned physicians.

In their experience, many private psychiatrists chose not to work with patients with psychotic disorders because of the amount of work, and lean reimbursement rate from insurance. Drs. Robert Laitman and Ann Mandel Laitman are always amazed at how long it takes people to get to Clozapine in the first place.

They themselves are swamped, currently helping over 200 individuals in 30 states manage Clozapine.  Help in the Home learned about the Laitmans’ work when local DMV area families recommended their powerful book and sent referrals our way.  It is extremely difficult to find facilities like ours that provide housing and are familiar with Clozapine management. 

Let’s take a look at how their continuity of care has evolved.

The Evolution of a Non-Profit & Saturday Kitchen Talks

The Laitmans’ formed a non-profit organization, Team Daniel, to advocate for and support people living with mental illness by organizing events for social support and exercise.  It all began with a love of running and organizing 5K’s each year on Long Island, NY to raise funds.

What began as Dr. Robert Laitman inviting one of his patients to his home every Saturday to run with him, morphed into more patients, plus their families.  Robert, Ann and their son would traverse their neighborhood as the group grew to 50 people.  Soon they needed food and coffee, lots of lots of coffee!

But a beautiful thing occurred- the kids started to get to know one another, as the parents sat together and shared their stories. Slowly but surely, word spread, new people showed up, and conversation about this controversial drug began to build momentum.

That all could have come to a screeching halt when the pandemic began, but once again they rolled with the punches. Switching over to Zoom gatherings, their small home-based gatherings blossomed into an even larger community. Now they connect with people across the US, Canada, Mexico and even South Africa.

The EASE Model

After years of leading the conversation around Clozapine, the Laitmans developed a framework that was easily understandable. Like most stages of recovery, patience is required. An important discovery in their work was the understanding that before progress could be made, it was important to quiet the voices and the delusions as much as possible without numbing the patient’s brain. And when this sweet spot is reached, for many, it’s the first time in a long time that they’ve been able to think somewhat clearly. That’s where the delicate work of treating the negative symptoms with pharmacology begins. 

More on the meaning of the acronym “EASE” below.

E stands for Early initiations

Schizophrenia is a neurodegenerative disorder when it’s not appropriately treated, but you can change the trajectory of the illness. Clozapine is the only drug that can make a significant impact. People that are on Clozapine just do not lose as much neural tissue as everyone else. So, you’re stopping the pruning process!

A stands for Aggressive management

Well over 50% of schizophrenia patients have anosognosia, which is no awareness of their illness. When you really don’t think you have an illness, you’re not gonna take something like Clozapine. That means we do a lot of direct observation and try to manage side effects. 

S stands for Slowly

The Prescribers’ Digital Reference recommendation is too much, too soon. This leads to withdrawals of over 50% of clozapine initiation. It’s not efficacy, it’s the side effects that make them quit. With the EASE method, we are able to keep people on Clozapine, with a 94% retention rate. 94%!  Don’t forget, our patients are usually everyone else’s treatment failures!

Patients starting Clozapine are going to feel awful. Sometimes you need to use other antipsychotics initially just to get enough control so that they’re not wildly, wildly psychotic. The other drugs do work to a certain extent, and they will allow the physician to increase dosage gradually. It is a mistake when we see psychiatrists remove other pharmaceuticals cold turkey, and then try to cram the Clozapine on as fast as humanly possible. People say they’re getting worse on Clozapine, but it’s because they don’t have an antipsychotic on board. When they’re used to a high dose of something else, you don’t just stop it. 

E stands for engagement

The entire team needs to be engaged. If there’s no support structure, you can’t do Clozapine.  Precise monitoring and adjustments of multiple medications needs focused attention by many in the patient’s circle working in tandem.

The best evidence of this was the relationships that began to unfold at our Saturday Kitchen Talks. You won’t believe the changes we saw take place right before our eyes.

The Power of Support

The only way those with schizophrenia diagnoses really get better is socializing. Most of them have never had friends, they’ve been entirely isolated. It’s invaluable seeing them encourage each other, they’re really so kind.

So much of the aggression schizophrenia is known for is driven by paranoia, but once they’re on treatment they are really sweet. When patients can’t make a rational decision on their own, they need help, not choices. Once they are treated, it’s remarkable. Engagement is vital for the health and success of the patient through every step.

What Does the Future Hold?

The Laitmans have teamed up with Laurel House to add cognitive enhancement therapy to their recovery protocol.  It is a mix of computer-based work and group therapy to increase patients’ neurological processing speed. Clozapine can take this to the next level!

Life-changing care could be possible for more schizophrenia patients and their families once a Clozapine focused clinic is available.  It is a dream shared by the Laitmans and our local clinician Dr. David Pickar. At Help in the Home we provide support for the management of Clozapine so our clients can fully experience life.  Having a Clozapine focused clinic could make the impossible possible for so many more.

Are you wondering if Clozapine is the answer for one of your loved ones? Are you a provider looking for resources and support to prescribe to your clients? Take a moment to look through the resources below for more details and information, or give us a call at (866) 967-9994!

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