MARGERY PICKS AND PANS: BOOK REVIEW

Speaking to my madness cover smallBook Reviewed:

Speaking To My Madness:  How I Searched For Myself in Schizophrenia

By Roberta Payne

Copyright 2013

Available on Amazon.com for $11.69   Kindle Edition  $3.99

Reviews of this book:

“STMM (Speaking To My Madness) is a rare find – a memoir of madness and beauty that hums… with the deep tremors of a difficult life lived bravely… I can hardly overstate how much I admire this book.”

David Dobbs,  New York Times contributor and author

 

“STMM describes the terror of Dr. Roberta Payne’s descent into madness.  The name of the illness that plagues her: schizophrenia…  At the end of this richly textured account, Dr. Payne celebrates the ‘new- found delights of her brain.  She has made for herself a life well-lived.”

Deborah L. Levy, PhD  McLean Hospital, Harvard Medical School

“It is remarkable, wonderful, absolutely worth your attention.”

Thomas Levenson, MIT

From her website:

“Dr. Roberta Payne’s book gives an extremely personal and highly literary spin to her battle with three of the most pressing illnesses of our time – alcoholism, mentall, and cancer…. The book is balanced with moments of intense introspection where poetically phrased passages give deep insight into the auther’s mind as she confronted mind-altering illnesses.

STMM is valuable as a memoir of madness and as a work of importance for those interested in psychology, psychiatry, and addiction.

Those interested in stories of redemption, too, will find immense value in Payne’s work, as it illuminates how ambracing sickness can ultimately lead to healing.”

 

How I came to read this book:

At the October 26th, 2013, SARDAA conference, I met Dr. Fred Freese from Akron, Ohio.  When he learned that I was from Denver, he told me that there was someone in Denver that I had to meet.  That was my introduction to Roberta Payne.

After the conference, Dr. Freese sent us both an email.  I don’t remember who emailed the other first, but I think it was Roberta who emailed me.  Would I like to meet for coffee sometime?  Great, I answered, and gave the location of a coffee house in mid-Denver. We met.  It was awkward at first.  It was clear that we were opposites.  She was quiet, and I was not!  But she told me that she had written a book.  I wrote down the name of the book, and went home and ordered it from Amazon.

From the first page, I knew that I was going to enjoy reading this book.  Roberta is a writer’s writer.  Her book is carefully and poetically written.  Her writing is rich with metaphors and other figures of speech.  When I mentioned this to her, Roberta said, “That’s the way I think.”

She describes in the book her battles with three demons: alcohol, schizophrenia and cancer.  Her triumph over all three is truly remarkable.  Her descriptions of her descent into hitting bottom with alcohol and with schizophrenia are beautiful and terrifying at the same time, and are not to be missed.

In summary, I couldn’t put this book down.  If you enjoy good writing, you will enjoy this book.  For anyone interested in substance abuse, psychology and cancer survival, this book is a must read.

I couldn’t put it down.

I pick this book, thumbs up!

Margery Wakefield

Let Your Congressman Know You Support the “Helping Families in Mental Health Crisis Act”

Rep. Tim Murphy, a psychologist by discipline, is leading the charge for significant reforms to our ineffective public mental illness treatment system, and needs your support.

The Helping Families in Mental Health Crisis Act (H.R. 3717) has the potential to reshape our mental health system. This landmark legislation is an essential first step in improving treatment for individuals with severe mental illness.

The problems the bill addresses are not Democratic or Republican problems but rather everybody’s problems. The Helping Families in Mental Health Crisis Act proposes a number of solutions including:

  • Requiring states to authorize assisted outpatient treatment (AOT) in order to receive Community Mental Health Service Block Grant funds.
  • Allocating $15 million for a federal assisted outpatient treatment (AOT) block grant program funding up to 50 grants per year for new, local AOT programs.
  • Carving out an exemption in HIPAA that permits a “caregiver” to receive protected health information when a mental health care provider reasonably believes disclosure to the caregiver is necessary to protect the health, safety or welfare of the patient or the safety of another. (The definition of “caregiver” includes immediate family members.)
  • Establishing a new National Mental Health Policy Laboratory in the Department of Health and Human Services.
  • Preventing federally funded “Protection and Advocacy” organizations from engaging in lobbying activities and counseling individuals on “refusing medical treatment or acting against wishes of a caregiver.”
  • Requiring the U.S. comptroller general to submit a report to Congress detailing the costs to the federal and state government of imprisoning people with severe mental illness.
  • Increases Congressional oversight of SAMHSA programs and seeks improvements to the programs it supports.

CONTACT YOUR REPRESENTATIVE TODAY

Please call and/or email and let your congressman know you support the Helping Families in Mental Health Crisis Act (H.R. 3717) and ask him or her to co-sponsor the bill.

Click here to find your Congressman’s contact information.

Below is a sample letter. Be sure to add your own personal story. 

Dear Rep. _________:

I am writing to urge you in support of the Helping Families in Mental Health Crisis Act (H.R. 3717). This bill takes necessary steps to fix the nation’s broken mental health system by focusing programs and resources on psychiatric care for patients and families most in need of services.
My family [INSERT YOUR PERSONAL STORY]

I am asking you, my representative, to co-sponsor the Helping Families in Mental Health Crisis Act (H.R. 3717) and take action to fix our broken mental health system.

Protect Patient Access to their Mental Health Medicines!

Under Six Protected Classes

The Partnership for Part D Access urges congressional action now to protect access to life-saving and life-enhancing medications, particularly for persons with mental illness.  Patient choice and access to medications under the Medicare Part D program is being threatened by a proposal being circulated by the Centers for Medicare and Medicaid Services (CMS).  Congress must stop CMS from making these changes to the Medicare Six Protected Classes policy. 

Major Concerns with CMS Proposed Regulation –

  • According to the National Institute for Mental Health (NIMH), the number one risk factor for suicide is untreated depression, including persons who are receiving ineffective treatment.  Yet, CMS wants to limit access to anti-depressants placing individuals with mental illness at higher risk for suicide.
  • While the average individual living with a mental illness will respond to most medications within a class or category, approximately 20 percent will not, and we do not have the ability to identify them.  That is why the physician needs access to all medications within the anti-depressant and anti-psychotic classes.
  • Limiting access to the most appropriate medications will drive higher costs in Medicare and Medicaid by increasing admittance to in-patient care and emergency departments.
  • CMS touts DoD and VA formularies (Page 127) as adequate to help persons with mental illness.  However, both agencies are coming up short when it comes to preventing suicide and providing appropriate care to soldiers and veterans with mental illness.
  • It is clear from CMS’ data that their formulary review process is ineffective in providing access to needed medications for persons with mental illness.  As demonstrated by their data highlighted on Page 128 of the proposed regulation – their standard formulary review process would only require coverage of 9 generic anti-depressant and 6 generic anti-psychotic medications, for a total of only 15 medications and no brand drugs.  In comparison, the current six protected classes policy entitles Medicare beneficiaries to access to 57 medications: 23 generic anti-depressants, 7 brand anti-depressants, 18 generic anti-psychotics and 9 brand anti-psychotics.
  • Additionally, CMS’ appeals and grievance process is a quagmire for Medicare beneficiaries.  According to Deputy Chief Administrative Law Judge C.F. Moore, “assignment to an ALJ may be delayed for up to 28 months.”  Further, while the delay is shorter for Part D appeals, advocates find that most cases are not heard within the 10 day requirement – and that does not factor in the flood of cases that would come if anti-depressants and anti-psychotics are removed from the protected classes.

The Regulation –

As part of a broader proposed rule regarding Contract Year 2015 changes to Medicare Advantage and Part D programs, CMS is proposing limiting and redefining, based on new criteria, the Part D program’s protected drug classes to exclude antidepressants and immunosuppressants for the 2015 coverage year, and anti-psychotics in 2016.

In redefining the Part D protected classes policy, CMS said that Medicare has five basic beneficiary protections within the program:

  • formulary transparency,
  • formulary requirements,
  • reassignment formulary,
  • coverage notices,
  • transition supplies and notices, and
  • coverage determination and appeals processes.

For a class or category of medication to qualify for six protected classes, beneficiaries who use the drug must require protections above and beyond these five basic protections.  CMS therefore argues that to be part of the protected classes policy, a class or category of medication must meet both of these new CMS-developed standards:

  • hospitalization, persistent or significant disability or incapacity, or death likely will result if initial administration (including self-administration) of a drug in the category or class does not occur within 7 days of the date the prescription for the drug was presented to the pharmacy to be filled; and
  • more specific CMS formulary requirements will not suffice to meet the universe of clinical drug-and-disease-specific applications due to the diversity of disease or condition manifestations and associated specificity or variability of drug therapies necessary to treat such manifestations.”

History of “Six Protected Classes”–

During implementation of the Medicare Modernization Act (MMA), which created the Medicare Part D drug program in 2003, CMS (at the urging of Congress) issued sub-regulatory guidance directing prescription drug plans (PDPs), through contract provisions, to cover “all or substantially all” medications within six classes and categories that the agency identified.  These included:

  • Anticonvulsants
  • Antidepressants
  • Antineoplastics
  • Antipsychotics
  • Antiretrovirals
  • Immunosuppressants

However, in time it became clear that adherence to the sub-regulatory guidance was uneven among plans.  Therefore, Congress pursued legislative action, led by Senators Gordon H. Smith (R-OR) and John Kerry (D-MA) to establish a statutory standard for protected classes.  In 2008, Congress established under Section 176 of the Medicare Improvements for Patients and Providers Act (MIPPA), the so-called six protected classes of drugs under Medicare Part D.  MIPPA codified CMS’ existing guidance and carried the force of law.  It required Medicare Part D drug plans to include in their formularies access to all or substantially all drugs in the six identified classes and categories of priority.  MIPPA also specified two statutory criteria that CMS had to use in identifying additional classes of clinical concern:

1)    restricted access to the drugs in the class would have major or life-threatening clinical consequences for individuals with a disease or disorder treated by drugs in such class; and

2)    there is a significant need for such individuals to have access to multiple drugs within a class due to unique chemical actions and pharmacological effects of the drugs within a class.

This policy stood unchanged until enactment of the Affordable Care Act (ACA). Under the ACA, Congress provided the Secretary of Health and Human Services (HHS) with authority to “identify, as appropriate, categories and classes of drugs for which the Secretary determines are of clinical concern.”  It added that the Secretary shall have the authority to develop the criteria used to make the designation.  However, the ACA also codified the in law the six existing protected classes and categories by name, and expanded coverage to include all drugs within these six classes and categories until such time as the Secretary makes changes.

Conclusion–

We urge Congress to contact CMS Administrator Marilyn Tavenner and Secretary of Health and Human Services Kathleen Sebelius to express your opposition to the changes CMS has proposed to the Medicare Six Protected Classes policy.

 

She Called the Shop “Trouble Coffee” in Honor of the People Who Helped Her When She Was in Trouble

How did toast become the latest artisanal food craze? Giulietta Carrelli, a woman with schizoaffective disorder, opened a coffee and toast shop to help her stay grounded.

….In San Francisco, Carrelli began assiduously cultivating a network of friends she could count on for help when she was in trouble—a word she uses frequently to refer to her psychotic episodes—while being careful not to overtax any individual’s generosity.

Carrelli also found safety in simply being well-known—in attracting as many acquaintances as possible. That’s why, she tells me, she had always worked in coffee shops. When she is feeling well, Carrelli is a swashbuckling presence, charismatic and disarmingly curious about people. “She will always make a friend wherever she is,” says Noelle Olivo, a San Francisco escrow and title agent who was a regular customer at Farley’s and later gave Carrelli a place to stay for a couple of months. “People are taken aback by her, but she reaches out.”

This gregariousness was in part a survival mechanism, as were her tattoos and her daily uniform of headscarves, torn jeans, and crop tops. The trick was to be identifiable: The more people who recognized her, the more she stood a chance of being able to recognize herself.

….The demands of running the shop, caring for two children, and swimming every day allowed Carrelli to feel increasingly grounded, but her psychotic episodes hardly went away; when they came on, she just kept working somehow. “I have no idea how I ran Trouble,” she says. “I kept piling through.” In 2012, after a five-month episode, Carrelli was hospitalized and, for the first time, given the diagnosis of schizoaffective disorder. Under her current treatment regimen, episodes come far less frequently. But still they come.

At bottom, Carrelli says, Trouble is a tool for keeping her alive. “I’m trying to stay connected to the self,” she says. Like one of her old notebooks, the shop has become an externalized set of reference points, an index of Carrelli’s identity. It is her greatest source of dependable routine and her most powerful means of expanding her network of friends and acquaintances, which extends now to the shop’s entire clientele. These days, during a walking episode, Carrelli says, a hello from a casual acquaintance in some unfamiliar part of the city might make the difference between whether she makes it home that night or not. “I’m wearing the same outfit every day,” she says. “I take the same routes every day. I own Trouble Coffee so that people recognize my face—so they can help me.”

by John Gravois, Pacific Standard Magazine

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