The mission of the Mood-PPRN is to improve the lives of people with mood disorders through patient centered comparative effectiveness research that identifies the most effective interventions. The Mood Patient-Powered Research Network (“Mood-PPRN”) seeks to create a network of over 50,000 patients with mood disorders. We are currently in the process of building the Mood-PPRN website. Anyone interested in joining the network, please have them email Leah Shesler at email@example.com. We will contact everyone once the website is completed about how to join.
In February 2014, the National Action Alliance for Suicide Prevention’s Research Prioritization Task Force (RPTF) released A Prioritized Research Agenda for Suicide Prevention: An Action Plan to Save Lives, which outlines the research areas that show the most promise in helping to reduce the rates of suicide attempts and deaths in the next 5-10 years, if optimally implemented. As a companion piece to the Prioritized Research Agenda, the RPTF also developed a Suicide Research Prioritization Plan of Action, which outlines the research pathways and short- and long-term objectives presented in the full Prioritized Research Agenda. These documents are available for download here.
We hope this will help to move the suicide prevention research field forward and to save lives!
Research Prioritization Task Force
National Action Alliance for Suicide Prevention
Findings from a study published in Schizophrenia Bulletin suggest that hospital admission for infections during childhood may put individuals at risk for the onset of a nonaffective mental disorder, such as schizophrenia.
Researchers also found that bacterial infection and infection of the central nervous system during the preadolescent years (ages 10 to 13) further increased the risk for developing nonaffective psychosis in adulthood.
–Psychiatric News Alert
Speaking To My Madness: How I Searched For Myself in Schizophrenia
By Roberta Payne
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!
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.
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:
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.
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.
CYNTHIA CASTANEDA: “As a peer/consumer who was once involved in the justice system, I know the importance of gaining treatment… I had a few encounters with the justice system until I was forced into treatment. Going to treatment gave me the tools necessary to achieve recovery. Without those tools, I may have remained trapped in a cycle of contact with the justice system. My conclusion was that recovery was not possible without treatment. I am living proof of the results.
The GAINS Center estimates approximately 800,000 persons with mental health issues are admitted annually to U.S. jails. Among these admissions, 72% also meet criteria for co-occurring substance use disorders. I was part of those statistics a few years back, so I would like to emphasize the importance of including peer support services in jail diversion programs as a form of treatment. A peer in recovery can be more easily accepted by the criminal justice population. The consumer is more likely to listen and better connect to a peer. The results of treatment are more effective. Aside from the benefit of having lived experience, peers have the gift of being able to understand firsthand what a consumer is going through. Peer support played a role in my recovery and made it possible for me to look up to someone in a similar situation and believe that I could overcome any mental health issues and stay in recovery as they had.
by Cynthia Castaneda, ATCC West Texas Community Supervision and Corrections Department Peer Representative.
Forty-eight Percent of American Christians Believe That Serious Mental Illness Can be Overcome Through Prayer and Bible Study Alone
I read a heartbreaking statistic the other day. Forty-eight percent of American Christians believe that serious mental illness can be overcome through prayer and Bible study alone. The people who hold this conviction know very little about mental illness. And worst of all, these believers inadvertently impose on the mentally ill undeserved guilt and shame.
Nothing could be further from the truth. Mental illness is not psychosomatic. The clinically depressed cannot just “cheer up.” People with obsessive-compulsive disorder are not able to “snap out of it.” Schizophrenics are not able to force themselves to live in the reality of a normal person. Mental illness is just as real and varied as cancer and heart disease. We wouldn’t tell people with physical diseases that they could be whole if they prayed more or were more diligent in their study of Scripture, would we? I hope not.
Unfortunately, we know less about the brain than we do the body’s other vital organs. Even though psychiatry has come light years recently, there is a sense in which psychology is still a pre-science. Developmentally, it is where chemistry was when it was alchemy. There are still many missing pieces. So when you pray for a cure for cancer, pray also for breakthroughs in our understanding of the brain. And be compassionate toward those who struggle with mental illness.
–”Jim’s Daily Awakenings” are short daily e-mail messages from Jim Jackson. These morning messages are based on Jim’s very successful radio spots heard daily on Houston’s 94.5, the BUZZ.
Last week, one of the landmark nonfiction books of the last 50 years was reissued by Vintage Books. “Is There No Place on Earth for Me?” by Susan Sheehan began in 1981 as a four-part series in The New Yorker; in 1982, it came out as a book, winning the Pulitzer Prize.
“Is There No Place on Earth for Me?” is about a woman who suffers from severe schizophrenia. In the book, Sheehan calls her “Sylvia Frumkin,” a pseudonym meant to protect her privacy; her real name was Maxine Mason, which Sheehan divulged after Mason died, at the age of 46, in 1994. She was overweight and overbearing, a difficult person even in the best of times, but also, Sheehan told me recently, “bright and articulate” — when she wasn’t delusional. The book’s title was a question Mason “had first asked her mother in an ambulance transporting her from one hospital to another in 1964,” as Sheehan wrote in an essay published after Mason’s death. (It is included as a postscript to the new edition.) Mason was 16 at the time.
I have no idea what moved Vintage Books to republish “Is There No Place on Earth for Me?” but I’m glad it did. The story Sheehan tells is a terribly sad one, and not just because of the flashes Mason shows of what she might have become if she had not suffered from mental illness. It is also appalling to see what she goes through as a mental patient: the hospitals that overmedicate; the misdiagnoses by doctors after the briefest of examinations; the lack of any kind of safety net when she is not hospitalized. But here’s the worst part: Even though the story Sheehan tells is more than 30 years old, there is only one real difference between then and now for the mentally ill. It’s worse today.
by Joe Nocera, The New York Times
- Find Peers to build their “circle of trust” with those who are facing similar challenges, get inspired, and take action.
- Share & Learn by commenting, uploading videos and photos, etc.
- Search & Add Providers they would like others to know about.
- Ask Questions of the experienced community members.
In later stages of development, TrustCircle will enable members to track their health in a HIPAA-compliant secure online environment, book appointments, and conduct telepsychiatry sessions.