Sunday, January 24, 2016

Keep Electroconvulsive Therapy (ECT) Available. Comment Online to FDA

ACTION ALERT. KEEP ELECTROCONVULSIVE THERAPY AVAILABLE. Comment now.
It is a little difficult to explain, but the FDA has to reclassify ECT ("Shock") in order to keep it available. They have to solicit comments on whether people are OK with reclassification and I expect that antipsychiatry will organize submission of comments against it. ECT helps some people who have not been helped by other treatments.
Please submit your comments online. Go to the following link.
Click on the Green Button and COPY AND PASTE the following TWO paragraphs into the form. You have to CUSTOMIZE THE FIRST SENTENCE IN 2nd PARAGRAPH , and you are encouraged to insert your own story and thinking at the end to make it personal. Note that this language I am giving is very specific as to what they are asking and what I suggest we say. Include both of the following paragraphs. The form asks for your name/address but that is not publicly available.
" [Docket No. FDA-2014-N-1210] Neurological Devices; Reclassification of Electroconvulsive Therapy Devices Intended for Use in Treating Severe Major Depressive Episode in Patients 18 Years of Age and Older Who Are Treatment Resistant or Require a Rapid Response; Effective Date of Requirement for Premarket Approval for Electroconvulsive Therapy for Certain Specified Intended Uses." 
"As the (INSERT YOUR INTEREST IN ISSUE, ex. “mother of someone with mental illness”) I SUPPORT the reclassification of electronconvulsive therapy devices to a Class II device to treat severe Major Depressive Episode associated with Major Depressive Disorder and Bipolar Disorder in patients 18 years of age and older who are treatment-resistant or who require a rapid response due to the severity of their psychiatric or medical condition. The terms "treatment resistant" and the phrase "require rapid response" do provide sufficient clarity to the population for which ECT benefits outweigh risks. I appreciate that in making this reclassification, the FDA is relying on the voice of science, rather than anti-psychiatry. The FDA previously held hearings on the issue in 2011. Reclassification is important. " 
(INSERT YOUR STORY HERE)

Wednesday, January 20, 2016

Notes on Senate HELP Committee Hearing on Mental Illness

Following are raw, unproofed contemporaneous notes about the Senate Hearing that took place 1/20/16. It was one hour and you can watch the tape here
http://www.help.senate.gov/hearings/improving-the-federal-response-to-challenges-in-mental-health-care-in-america Don’t rely on my notes.

On January 20, 2016, Senate Health Education, Labor and Pensions (HELP) Committee held hearing on mental illness against backdrop of several bills being proposed. Bills have been  proposed by by Senators Blount, Cornyn and Cassidy/Chris Murphy. The committee has some jurisdiction over particular parts of those bills. Chair Sen. Alexander says he has agreement with Sen. Murray (co chair) to move quickly.

Sen Murray’s opening remarks focused on inadequate access and need to integrate mental and  physical  health

Sen Mukolski talked in favor of more money for Community Mental Health Centers, but as Dr. Torrey pointed out in American Psychosis, CMHCs have largely been unwilling to serve the most seriously ill.

BRIAN HEPBURN (NASMHPD)

The first witness was Dr. Brian Hepburn, Exec Dir. of National Association of State Mental Health Program Directors (NASMHPD) He and others talked about need for relief from IMD Exclusion, a provision of Medicaid that prevents states from treating seriously mentally ill who need hospital care. He noted that there is a demo project that gives relief to certain private free standing hospitals that want to provide care to SMI, but it is  only a small demo project

He said “SAMHSA is  great partner” and complimented current leadership, which is not surprising, since SAMHSA funds them and is responsible for encouraging them to take on broad mandate rather than focused one. He complimented SAMHSA for the  First Episode Psychosis Program, but that was driven by NIMH, and Congress forced SAMHSA to allocate funds to it.
He said what we all know, but public is unaware of: Almost all admissions to state psychiatric hospitals are ordered by courts. It have become virtually impossible to get into a state hospital until after you do something that causes a court to order you into treatment.
He recommended our proposal to ameliorate effect of IMD Exclusion and for Reauthorize Medicaid follows  person” policy.

In response to a question, he said state mental health director’s role is to take care of as many people as cost effectively as possible, and only mentioned serious mentally ill as if it were some pesky afterthought.

Penny Blake (Emergency Nurses)

Next speaker was Penny Blake, a nurse speaking on behalf of Emergency Nurses Association and she was terrific. She focused on the fact that there are not enough psychiatric hospital beds so patients are boarded in emergency rooms (ERs) often for days, sometimes in a 10X10 cell that requires extensive staffing to watch them, while the staff tries to find a psych facility willing to transfer them to. She noted that nationwide Boarding Time in ER = 18  hours for psych care. 4 hours for other care. She noted that better community services, for the seriously ill who are likely to wind up in hospital is key. In response to a question from Sen. Murray she listed bed shortage as the top problem that has to be solved.

In response to a question about HIPAA, she gave a great story about HIPAA. A patient came in to ER. His parents had been calling around looking for him, but she couldn’t tell  parents he was there in the ER. That story I heard before, but she went on to make another point: Because she could not tell parents their kid was in hospital, she couldn’t get medical information from them. That information would have helped her provide better treatment. We often hear it said that nothing in HIPAA prevents facilities from receiving information (even if they can’t disclose it) but in this case HIPAA did prevent the receipt of info. In response, Sen Alexander noted that “touching HIPAA is like touching a wire. But we should look at it. “ Asked people to provide lingo for  specific HIPAA exemption.

Dr. William Eaton (Public Health)

Dr. William Eaton a Professor at John Hopkins in Baltimore was the worst, most irrelevant speaker. He basically ignored serious mental illness (SMI), and focused only on depression. He continually touted the need for “prevention” in spite of the fact that schizophrenia, bipolar, and other serious mental illness cannot be prevented.  He criticized NIMH for focusing on  biological underpinnings rather than taking a “public health” approach. (Note: the Institute of Medicine, and almost all leading authorities recognize that there is no ‘public health  approach (which can mean advertising or vaccinations, or other intereventions applied to everyone) that prevents serious mental illness. He praised SAMHSA (which he worked at two days a week), but even he admitted it was outrageous that they refuse to have a psychiatrist on staff.

His ‘solution’ is high school education programs and even supported “Teen Screen” which has been proven by research not to help. See http://mentalillnesspolicy.org/samhsa/teenscreenunproven.html )


HAKEEM RAHEEM (Consumer)

Hakeem Raheem, a person with bipolar was fairly brilliant. He was the only speaker who regularly, unabashedly used the phrase ‘mental illness’, rather than ‘mental health.’ He explained how while at Harvard he became psychotic and delusional and attributed his recovery to his parents ability to have him quickly admitted to ER and being given meds quickly. He said, “Medicines are key. I take antipsychotics every morning”. He explained the difficulty of finding right med, but said it  is difference between life and death. He suggested that meds must be protected, affordable and accessible to people with SMI. He spoke in favor of peer support provisions of S 1945 (?) bill, but did not mention the antipsychiatry peer orgs funded by SAMHSA. Instead he mentioned the peer support programs run by NAMI and Depression and Bipolar Support Alliance as being useful. Sen. Alexander asked him how to persuade people to seek help. He said, “We cant persuade people to do what they don’t want to do. When I was in psychosis, no one could tell me I was in psychosis.”

Sen Collins
Spoke in favor of Cardin bill which created IMD exemption pilot demo program allowing IMD exclusion for private psych hospital. And supported Cassidy/Murphy bill will addresses IMD exclusion

Sen Chris Murphy
Claimed that some form of bill will go to Senate floor this year
 
Sen Cassidy (LA)
was very on point about SAMHSA and lack of meds in jail, and problems at SAMHSA. Unfortunately, he also seemed to embrace peer support, but I don’t know if he is talking about the antipsychiatry ones SAMHSA supports, or the kind Hakeem Raheem talked about (or if he knows difference. I kind of think he might, since was involved in mental health legislation in House before moving to Senate.)

Sen Warren
 Focused on supportint  a reporting on insurance company parity bill introduced by Rep. Kennedy.  Apparently, it would be like a consumer watchdog for parity that could report  problems in private insurance parity to legislators.  A more important idea would be to eliminate federal IMD Exclusion, which is the biggest form of non-parity, as many speakers pointed out.

Sen Franken, like Eaton talked about prevention.  He apparently isn’t aware that SMI can’t be prevented. He also talked about kids in rural area having higher suicide rates than adolescents in urban areas, oblivious to fact that kids in any area are least likely to commit suicide. Blamed stigma.

Sen Whitehouse (RI)
Noted that the Judiciary Committee wil be considering Comprehensive Addiction Recovery Act, that has related provisions.

Again: listen to the one hour hearing for more details or to ensure my notes are correct. Thank you

Tuesday, January 5, 2016

On the death of Ted Stanley, giant psychiatric research philanthropist (Stanley Medical Research Inst. Statement)

The Death of a Research Giant

            The death of Ted Stanley on January 4 deprives the psychiatric research field of a philanthropic giant.  An extremely successful businessman, he chose to spend his money on research on serious mental illness, especially schizophrenia and bipolar disorder, rather than on yachts or Caribbean hideaways.  On occasion he was even known to fly coach, rather than business or first class, in order to have more money to donate.
            The creation of the Stanley Medical Research Institute (SMRI) in 1989 by Mr. Stanley and his wife, the late Vada Stanley, has had a major impact on schizophrenia and bipolar research.  Over the past 27 years the Stanleys donated almost $600 million to SMRI.  This money has supported extensive research on the causes and treatment of these diseases.
            For example, SMRI has funded over 400 treatment trials using drugs that were unlikely to be supported by the pharmaceutical industry because the drugs could not be patented and therefore could not be profitable.  The Stanley funds were also used to set up the Stanley Brain Collection, the most widely used brain bank in the world by researchers for schizophrenia and bipolar disorder.  Over the past 20 years it has distributed without charge over 250,000 samples of brain tissue, as well as DNA and RNA, to 303 research laboratories in 22 countries. Finally, the Stanley funds were used to set up the Stanley Laboratory of Developmental Neurovirology at Johns Hopkins University Medical Center.  This laboratory has become the leading research center in the world for research on infectious causes of schizophrenia and bipolar disorder.  SMRI’s coordinated research efforts are the primary reason for the emergence of inflammation as a major research area for these diseases and the likelihood that infectious agents play a role in the causation of at least some cases.  This in turn has led to the current use of anti-inflammatory drugs to treat these diseases, thus opening up a completely new avenue for treatment.
            In addition to funding research at SMRI, Mr. and Ms. Stanley also funded psychiatric research at the Cold Spring Harbor Laboratory in New York and at the Broad Institute in Cambridge. In 2014 Mr. Stanley donated $650 million to the Broad Institute to support research on the genetics of schizophrenia and bipolar disorder.  Thus, altogether the Stanleys donated more than $1.2 billion to research on these diseases.
            All of us in the mental health field have lost a remarkable friend and supporter.  We are extremely indebted to Mr. and Ms. Stanley, and we should try and live up to the very high standard in commitment to this research that the Stanleys have set.
Maree J. Webster, Ph.D.
Director, Stanley Medical Research Institute
E. Fuller Torrey, M.D.
Associate Director, Stanley Medical Research Institute
Robert H. Yolken, M.D.

Director, Stanley Laboratory of Developmental Neurovirology

Saturday, January 2, 2016

Conf Call: How to Prevent Police from Harming/Arresting Mentally Ill

You're Invited
"How to Prevent Police from Harming/Arresting Mentally Ill" 
Thursday, Jan 7 at 7PM EASTERN standard time 
Dial in # (712) 775-7031  
Access Code: 715-149  

Join this important conference call. Police Chief (Ret) Michael Biasotti, is the former Pres. of NYS Association of Chiefs of Police, a member of the Treatment Advocacy Board and an expert on police interactions with the seriously mentally ill who recently testified to Congress.

Chief Biasotti Testifying to Congress
During this call, he will help mental illness advocates understand why police sometimes shoot people with mental illness, alternatives to CIT to reduce those shootings, why police take mentally ill to jail instead of hospitals, and more. 

Most importantly, he will teach mental illness advocates how to turn police and sheriffs into partners. Law enforcement officials are as upset as advocates, that because the mental health system won't treat the seriously ill, the police department has to step in.  Chief Biasotti will show how to reach out to local and state sheriffs and police to get them to support the changes that will return care of the seriously ill back to mental health departments where it belongs. Many mental health advocates look at law enforcement as the enemy because of the few high-profile incidents that go wrong,  But police and sheriffs are natural supporters of preserving psychiatric hospitals, changing civil commitment standards, implementing Assisted Outpatient Treatment and other programs that help the most seriously ill. It makes their job easier. Their voice is powerful and we have to learn how to engage them.  

Reaching out to police and getting them on our side has been hugely successful in NYS. The NYS Assoc. of Chiefs of Police has supported reform of state laws and national legislation to help the most seriously ill. 

Dial in # (712) 775-7031. 
Access Code: 715-149  
Jan 7, 7PM EASTERN standard time
Share with friends

Follow us on Facebook and Twitter or visit our website