Petition for Change in the Mental Health System and Psychopharmacology

The Issue

Introduction

The mental health system and the pharmaceutical industry are lacking in transparency by largely failing to reveal all of the possible side effects of long-term psychiatric medication use. Evidence-based tapering strategies, long-term safety studies, and public awareness of disabling withdrawal syndromes are insufficient and intentionally avoided.

Since the introduction of Lithium as a treatment for bipolar disorder in the late 1940’s, an extensive amount of time and money have been poured into the development of medications for many psychiatric illnesses. The Diagnostic and Statistical Manual of Mental Disorders (DSM) expands with each successive edition and is currently in its 5th edition. The current range of medications available is diverse and extensive. They are hailed as essential and lifesaving and for some, this has proven to be true. However, there is another side to this story that remains largely unknown to the public.

The number of people that have suffered considerable harm and long-term debilitating ailments from the inappropriate prescribing and de-prescribing of these medications is rapidly increasing. This group of people is largely unacknowledged by the healthcare system, the pharmaceutical industry, and society. The authors of this petition are two of those people. We, like tens of thousands of others, are experiencing what is known as ‘Protracted Withdrawal’, also known as ‘Post Acute Withdrawal Syndrome or PAWS’. Symptoms reported by those in withdrawal and PAWS are varied, expansive, severe and can last for months or years. A list of symptoms can be found at the Inner Compass Initiative web site (Inner Compass Initiative - Symptoms). This is a condition typically associated with benzodiazepines (anxiety medications) and to a lesser extent with alcohol. However, the reality is that pretty much any psychiatric drug can cause this. This is a crucial public health concern and should be addressed immediately. I will briefly review our story and then discuss why this global epidemic must be conveyed to the public and our public health officials promptly.

I began my 30-year history of psychiatric medication use at the age of 24 while serving in the U.S. Navy as a nuclear power plant operator. At both VA and civilian hospitals, I have been the subject of and witness to abuse by the very system that was supposed to be helping me, but instead caused more harm. Decisions that my providers made regarding changes to my psychiatric medications landed me in the ICU due to medication / withdrawal induced hyponatremia, kidney issues, and cardiac issues that nearly cost me my life. I am now in my 4th year of PAWS. Most of the severe symptoms have abated, but I am still suffering with severe sleep issues. The co-author, a nurse/nurse practitioner working in healthcare for 15 years, has been disabled by PAWS for the last 2 years. She has a 2-decade long history of SSRI use starting at the age of 14. Since age 18, she has had 6 failed attempts to come off antidepressants with the help of physicians. Repeated withdrawals over the years were inappropriately misdiagnosed as “relapse of mental health problems” leading to reinstatement and the addition of new psychiatric medications. Unfortunately, this is a very common scenario and why we are fighting for increased awareness. We have experienced many severe side effects from both use and the discontinuation of these medications which includes type 2 diabetes, sleep disorders, neuropathy, metabolic syndrome, cardiac issues, gastroparesis, dysautonomia, vision issues, akathisia (What is Akathisia), and many more. A common misconception is that these medications work solely on receptors in the brain. However, the same receptors are present throughout the body and this is the cause of widespread symptoms involving the gut, nervous system, heart, immune system, and most organ systems.

In addition to PAWS, we wish to bring awareness to other severe side effects experienced commonly by those withdrawing from psychiatric medications.

1.Tolerance to and withdrawal from benzodiazepines (anxiety medications like Xanax and Ativan) are now known to cause a condition known as benzodiazepine induced neurological dysfunction or BIND (BIND Facts).

2. Use of and withdrawal from antidepressants have been found to cause Post SSRI Sexual Dysfunction (PSSD faq), which in some cases may be permanent.

3. Antipsychotics, including the atypical antipsychotics which are now being prescribed for sleep and depression among other things, are widely known to cause Tardive Dyskinesia (TD) and akathisia (AKA). These are debilitating movement disorders, that at times become permanent. These can also be experienced as withdrawal side effects from antidepressants and benzodiazepines. TD involves repetitive, uncontrollable, writhing movements of the body. Akathisia is a state of extreme restlessness and terror accompanied by a constant need to move. Akathisia has a very high incidence of suicide due to the severity of symptoms. More information on this can be found here. (tardive-dyskinesia), (Akathisia) (Akathisia Alliance)

People suffering from such conditions will likely have discovered the lack of medical expertise in this area and may find themselves looking to internet support systems for assistance. Not only are we frequently alone in battling this, but our friends and family also find themselves at a loss, do not completely understand the horrors of what their loved ones are experiencing, and do not know effective ways of helping.

Many of these conditions are largely preventable with proper medication tapering. Current FDA tapering protocols are very non-specific and the length of taper that is suggested is far too short. Appropriate medication tapering needs to be done hyperbolically and very slowly, often at a rate of 10% of current dose per month or less as discussed in ‘The Maudsley De-Prescribing Guide by Mark Horowitz and David M. Taylor ( Maudsley Deprescribing Guidelines ). Currently, this is not widely known in the medical community and is a significant cause of suffering that so many endure. At this time, the Surviving Antidepressants (Surviving Antidepressants ) peer support website has over 22,000 members and is growing every day. Benzobuddies (Benzo Buddies ) is another peer support site created for those trying to come off benzodiazepines and has almost 32,000 members. There are withdrawal coaches that independently help others taper their medications and a few taper clinics listed at the end of this petition. They are one of the few supports for patients in withdrawal or for those tapering antidepressants, antipsychotics, and benzodiazepines that are currently available.

This needs to change.

Purpose

The purpose and intent of this petition is not to “ban” any psychiatric medication. Its purpose is to give a voice to the many people suffering from this awful affliction, often alone and isolated from support. It is our hope to gain the attention of decision makers in the US Government, The World Health Organization, and Governments around the world to begin the process of properly researching and addressing these conditions. This petition seeks to accomplish the following.

1. Raise Public/Provider Awareness

   Protracted withdrawal syndrome (PWS) aka Post Acute Withdrawal Syndrome (PAWS) BIND (Benzo-Induced Neurological Dysfunction PSSD (Post SSRI Sexual Dysfunction) Tardive Dyskinesia (TD) Akathisia (AKA) Neurological “kindling” ( What is Kindling? ) through repeated psych drug administration and withdrawal, failed cross tapers, cold turkey withdrawals, etc. Full informed consent regarding risks of above in writing prior to prescribing (official document that is signed by patient and prescriber and part of medical record)

2. Stimulate Needed Research

   Require and conduct long-term studies (years) with long-term follow-up outcomes data Require and conduct long-term (years) studies on the effects of psychotropic medications on child brain/physical development Require and conduct research into etiology of PWS / PAWS and possible treatments Require and conduct research into differences in metabolism of psychotropic drugs in males and females in serum drug levels and effects across menstrual cycle Require that all pharmaceutical studies that are conducted should be registered in a central database upon proposal, published, and made public regardless of the outcome Require regulatory agencies to utilize all available studies (including failed studies) to consider approval of a medication, not just industry studies Require and conduct new studies independent of pharmaceutical influence/funding Regulatory agencies should no longer grant long-term safety approval for NEW psychotropics without long-term studies

3. Encourage Development of Better Patient Support Systems

   Therapists/coaches/social workers need to be trained in protracted medication withdrawal and the basics of drug tapering. ICD-10 code should be generated for PWS/PAWS/BIND Qualification for disability compensation for duration of illness for PWS/PAWS/BIND/TD/AKA Provider education and awareness of PWS/PAWS/BIND/TD/AKA and differences between withdrawal vs relapse in order for patients to receive timely, appropriate diagnosis and high-quality care Ban pharmaceutical advertising as the USA and New Zealand are the only 2 high income countries that allow this (TV, Radio, Printed Media, Internet such as on YouTube) (Most High Income Countries Ban Drug Advertising)

4. Investigation into validity of DSM diagnostic criteria

   How this has changed since introduction of psychotropics to favor increased prescribing practices Current diagnostic criteria are highly subjective and subject to bias. More objective means need to be developed to prevent misdiagnosis

5. Updated FDA tapering guidelines

   Maudsley Deprescribing Guidelines Ashton Manual Patient-centered tapering Provider education Access to and insurance coverage for compounding pharmacy formulations for smaller dosing increments during tapering

The inadequate treatment of mental health through inappropriate prescribing practices has impacts far beyond the individual. Its effects extend to families, social circles, work life, and to the community at large. Those afflicted are often unable to work, care for their families, go to school, or even sometimes independently care for themselves. It can be completely disabling for months to years, and unfortunately suicide is not uncommon. Patients often bounce from doctor to doctor trying to figure out what has gone so incredibly wrong and find nothing definable or treatable. Many are labeled as hypochondriacs or just plain crazy, which just adds insult to injury. Countless are put on new medications to treat their symptoms, which oftentimes does not work or worsens the condition. This expends time and resources in the medical system that is already stretched thin. With appropriate tapering provided by educated providers, much of this suffering is preventable. Further research into these conditions and on long-term outcomes of these psychiatric medications may ultimately lead to treatments that would allow people to get their health back much sooner.

Please join us in advocating for change in the mental health system, to support updating our understanding of psychopharmacology, and how to address the hazards associated with it. Too many are suffering with PWS/PAWS/BIND/PSSD/TD/AKA largely on their own and they need your support. Please support them and sign this petition to encourage those in power to begin to enact the necessary changes to end this epidemic of silent suffering. If you sign the petition, feel free to share your experiences or any relevant information.

Below you can find a pamphlet that describes the petition. A link to a pdf is provided below for viewer access to the document. You may then print and distribute in support of sharing awareness and support for the petition.