Wednesday, August 13, 2014

What We Can Do about Depression

By Ken Duckworth, NAMI Medical Director

I am one of many who would say that Robin Williams was among my favorite actors.  His portrayal of a psychiatrist in Good Will Hunting is my all-time favorite. A colleague of mine told me her kids said to her last night, “Mrs. Doubtfire is dead.” They were crushed by this news which seemed so unbelievable based on their experience of the character. He was a figure that transcended generations. It was a very sad day for many, and my heart goes out to his family, who will bear the incredible pain of his death long after the news cycle ends.

I recalled that he had a history of struggles, but I was still shocked to hear that he had died by suicide. He was a genius and had many supports. But of course depression doesn’t calculate those things. Severe depression distorts rational thinking and can lead to the fixed idea that hopelessness and pain are to be your experience forever. I have heard this from patients who have lived after suicide attempts. They told me they had lost all perspective and simply wanted to end their pain. They often reported simply losing a sense that they mattered to other people and forgot that they too were loved.

Depression distorts reality and causes a risk of death. It is a persistent and serious public health crisis that doesn’t get enough coverage. It can happen to anyone and is associated with a great deal of the suicides in our country. When combined with a substance use disorder it becomes even riskier and harder to treat, and when it is part of a bipolar disorder it requires extra attention. Other public health problems like heart disease have seen great results in the past several decades—we cannot say the same about suicide.

What can we do about this public health crisis that takes so many from us?

  • Advocate. Fight for better treatments and for research into the underlying causes of psychiatric illnesses.
  • Be proactive. Work to be sure that people get screened for this depression and that help happens earlier. National Depression Screening Day is October 9.
  • Get medical. Get checked for medical causes of depression like thyroid disease.
  • Take the long view. We can encourage people to stay with treatments as some do work even after others have failed. That is well established from the STAR*D study by NIMH.
  • Integrate. Co-occurring disorders (like depression and substance use) often are poorly integrated into a persons care plan. This needs to change as substance use can be a failed self medication strategy to treat depression.
  • Change the field. We can demand more cognitive behavioral therapy, which clearly helps with depression, but many mental health professionals aren’t trained to provide it.
  • Open up. We can change the dialogue about depression—it is a condition that needs to be talked about. Isolation and silence are the dangerous traveling partners of depression.
  • Come together. Our voice is more powerful together than alone.
  • Love. Like Robin’s character in Good Will Hunting we can reach out and love those we know who are struggling and let them know we are here for them.

Chances are someone you know is struggling with depression, and this is a simple way that can make a difference.

Rest in Peace Robin. We shall all miss you.

Photo: Flickr / Eva Rinaldi

Thursday, August 7, 2014

Setting the Record Straight

By Mary Giliberti, NAMI Executive Director

As Congress goes into its August recess, it has yet to act on legislative proposals to improve mental health care in the U.S.  Nearly two years after the Sandy Hook elementary school tragedy in Newtown, Conn. focused attention on the nation’s broken mental health system, there has been much discussion in Congress about how to improve mental health care but very little resolution.    

Two significant bills have been introduced in the U.S. House of Representatives, one by Representative Tim Murphy (R - Pa.), the other by Congressman Ron Barber (D. - Ariz.).  Both bills contain many excellent provisions that, if enacted, would represent major improvements in the mental health system. 

For example, both bills include urgent resources for suicide prevention. Suicide is currently the second leading cause of death for young adults in the U.S. Having lost someone close to me to suicide, I know the consequences of inaction in this area and the devastating impact of suicide on families and those close to the person.   

Both bills also contain multiple provisions to put more resources into jail diversion and community reentry for individuals living with mental illness involved with the criminal justice system. The criminalization of people living with mental illness is a profound injustice and violation of human rights. Recently, I visited the Cook County jail in Chicago and saw firsthand why this correctional institution has been characterized as the largest de-facto mental health treatment facility in the U.S. The numbers of people with mental illness housed there was sickening.

The two bills also contain provisions to protect access to psychiatric medications in Medicaid and Medicare. Both would eliminate the exclusion of mental health providers from existing federal resources to expand and improve health information technology and electronic health information systems. Both bills provide resources for better integration of mental and physical health care. Finally, both would permit same day billing in Medicaid for physical and mental health services—something which is currently not permitted and imposes terrible burdens on people who have to make separate appointments and arrange transportation multiple times. 

Representative Murphy has been tireless in his efforts over the past two years to elevate attention to issues and promote improvements in access and quality of mental health services. Prior to his hearings, there was little discussion on Capitol Hill of the poor outcomes experienced by far too many people living with mental illness. NAMI is grateful to him for his ongoing efforts. His dedication to improving mental health treatment and services cannot be questioned.

Representative Murphy’s bill is not without controversy and there have been differences of opinion within the mental health community over some provisions. These include provisions pertaining to the U.S. Substance Abuse and Mental Health Services Administration (SAMHSA), involuntary inpatient and outpatient commitment, the federal health privacy law (HIPAA), the Medicaid prohibition on paying for certain inpatient psychiatric treatment, and the federally funded Protection and Advocacy for Individuals with Mental Illness (PAIMI) program.

People on both sides of the issues have criticized NAMI for either supporting Representative Murphy’s bill or not being supportive enough. Although criticism can be constructive, some has been based on incomplete information. Some have failed to appreciate the harm that can come from infighting in any community and the need to find common ground and real solutions that can be enacted into law.

In a previous job, I served as disability counsel to the U.S. Senate’s Health, Education and Pensions (HELP) Committee. This experience more than any other shapes how I look at comprehensive mental health legislation. During my time on the Hill, I worked on several major bills and found that compromise led to bills that could clear both parties and both houses and usually led to policies that were successfully implemented. In the polarized political climate that currently prevails in Congress, sharp disagreements about specific provisions in bills only guarantee that nothing will pass.

Mental illness does not discriminate. It affects Republicans and Democrats—and their families—alike. In the weeks remaining before Congress adjourns, we need to drive that message home.

NAMI has been working hard behind the scenes to build consensus on some of the issues that are controversial. For example, we have recommended an alternative approach on HIPAA that would instill guidance in federal law clarifying that communication with families and caregivers is preferable in treatment and when it is permitted or not permitted.  

NAMI has long advocated repealing completely the federal Institutions for Mental Diseases (IMD) exclusion that prohibits federal Medicaid dollars from paying for inpatient treatment in certain types of psychiatric hospitals and facilities. Nonetheless, we support a narrower provision in the Murphy bill that would allow federal Medicaid dollars to be used for short-term acute inpatient psychiatric treatment. This represents reasonable compromise. Unfortunately, the IMD exclusion is not addressed in Representative Barber’s bill. NAMI continues to urge individuals and families affected by mental illness to call on Members of Congress to include it in comprehensive mental health legislation.

But repealing the IMD exclusion is not enough. A major journal article this month noted abysmal rates of follow-up care for people after they leave hospitals. The National Association of State Mental Health Program Directors (NASMHPD) recently issued a report which noted that inpatient beds must be part of community-based systems of care, not apart from them. 

We must demand better coordination of care for people reentering communities and better long term outcomes in treatment. Data on quality and outcomes of services in the mental health field is sorely lacking. Therefore, NAMI also strongly supports Representative Murphy’s call to create a national mental health policy laboratory to track outcomes.

Court-ordered Assisted Outpatient Treatment (AOT) is sometimes called the “third rail” in the mental health community for major reform. There are sharply polarized opinions on either side.  They all should be respected in a dialogue to seek common ground. NAMI policy supports AOT as a last resort. However, we urge more focus on earlier options (“first resorts”) because they can reduce crises before they occur and ensure that AOT is used for the right reasons—not because people cannot get help earlier on a voluntary basis.

NAMI also strongly supports first-episode psychosis programs that provide early intervention when young people first show symptoms of psychosis, offering treatment and coping strategies, support to families, and education and employment support services.  Comprehensive mental health legislation should support such programs including mechanisms for paying for such treatment through Medicaid and other funding sources.

Some people believe NAMI has not advocated for the elimination of SAMHSA because we receive money from the agency. In full disclosure, we receive 3 percent of our funding from SAMHSA. NAMI is funded by SAMHSA to run the STAR Center, a technical assistance project that among other things, promotes outreach to diverse cultural and age groups of people with mental illness—as well as individuals and families  involved in the criminal justice system.  

Even if NAMI’s funding from SAMHSA were larger, concerns that this compromises our advocacy are unwarranted. We will continue to urge SAMHSA and other federal agencies administering programs relevant to mental illness to focus resources on the needs of those whose lives have been significantly affected by mental illness. 

It is easy to criticize legislative proposals. It is harder to forge compromise. NAMI wants meaningful solutions to the mental health crisis in America. We need assertive action by Congress now.

The purity of rigid positions means little to a person sitting in a jail cell today who was in need of crisis care the night before, or to the family of this person. They mean little to a person living with both schizophrenia and diabetes who cannot get integrated treatment—and whose lifespan is likely to be 25 years shorter than the general population. It is time to join together to fight against the abysmal mental health system, not each other. If we fail to do so, we will have only ourselves to blame if Congress does nothing.      

On Thursday, September 4, attendees of the NAMI Convention and advocates throughout the country have the opportunity to have their voices heard on the importance of Congressional action through a National Day of Action. The message will be clear and simple—Congress must #Act4MentalHealth and pass comprehensive legislation to improve mental health care this year! Stay alert for more information about the National Day of Action in the coming weeks.

Visit NAMI’s website to read more about the two bills and NAMI’s position.

Tuesday, August 5, 2014

Connect 4 Mental Health®: Help Spread the Word for Community-based Innovations

By Mary Giliberti, NAMI Executive Director

The diversity of our lived experiences is part of what make NAMI unique. As NAMI, we stand together to advocate for innovations that hold the promise of recovery for everyone.

Among our core values are our recognition of the importance of community and a belief in our capacity to inspire and build better lives for the millions affected by mental illness. In our local communities, we believe greater collaboration among the mental health communities, individuals, families and community-based organizations will help promote effective, sustainable mental health care services and supports. This is turn will positively impact the communities in which we live.

While progress has been made, gaps still remain in access to mental health care. Many people who cannot get the care they need end up living on the street and are forced to “rely” on emergency rooms or state and local jails for getting treatment.

Approximately 40 percent of adults living with serious mental illness do not receive mental health care. Nearly one-half of all lifetime cases of mental illness begin by age 14; 75 percent by age 24. Early identification and intervention, unavailable for far too many, are critical to saving lives.

This is why last year NAMI, in collaboration with the National Council for Behavioral Health, Otsuka America Pharmaceutical, Inc. and Lundbeck launched Connect 4 Mental Health (C4MH), a nationwide initiative calling for communities to make treatment of serious mental illness a priority.
Community-based organizations can help turn the tide. Many evidence-based models that can help transform the mental health care system already exist in specific communities, but too often they go unrecognized.

Inspired by innovative examples honored at a C4MH Summit in 2013, NAMI is excited to announce the next phase of the initiative, the Community Innovation Awards, which will recognize additional models. The deadline for applications is Oct. 3, 2014.

Recognizing Outstanding Efforts

C4MH will award $10,000 each to four U.S.-based community programs that exhibit innovative work in any of the following areas:
  • Early intervention
  • Creative use of technology
  • Continuity of care
  • Service integration
Winners will also be able to participate in a one-on-one Mentorship Program to learn from the “national success communities” highlighted last year. These innovative programs, including an early intervention initiative in Florida, an integrated primary care and mental health care technology solution in Massachusetts and others, empower and equip individuals for success in their own recovery journey. Through the mentorship, we are striving to encourage replication as well as generate new ideas.

Too often people and families find little consistency between organizations and across systems of care when seeking mental health treatment and services. Through the C4MH awards, NAMI State Organizations, NAMI Affiliates and others are able to help promote and encourage programs that are working effectively in their local communities to improve the lives of people living with mental illness and who are at-risk.

Connect 4 Mental Health seeks to drive solutions by giving awards to and raising public awareness about those programs that are “doing it right.” You are encouraged to apply or recommend other mental health programs in your community to apply as well.

Stay Tuned for More

In the coming months, C4MH will also provide stories about the community-based organizations that will be mentoring award winners as well as stories from the individuals being served by them. Expect them to show pioneering, creative, and individualized programs and services. There is no “one-size-fits-all” approach to addressing mental health care locally, but we hope the stories will further promote actionable steps for communities to innovate and replicate programs and services that work.

Join the Conversation

In the meantime, I encourage you to participate in a Twitter chat, co-hosted by NAMI (@NAMICommunicate) and the National Council (@nationalcouncil), on August 14, 2014 at 2 p.m. ET. During the chat, you can hear from other communities and share your ideas about improving mental health care at a local level, as well as learn more about the awards program and how to apply. To join, follow #C4MH.

Wednesday, July 23, 2014

A Groundbreaking Commitment to Psychiatric Research

A Groundbreaking Study and the Largest-ever Commitment to Psychiatric Research


By Ken Duckworth, M.D., NAMI Medical Director

Today I was fortunate to be on a panel to discuss the findings of a major piece of work published in Nature and the unprecedented $650 million dollar gift from Ted Stanley to the Broad Institute to further this type of work. The event was a celebration of Mr. Stanley’s game changing vision and commitment to research in the underlying biology of psychiatric illnesses, and a call to action for more progress in this crucial area. I represented the perspective of NAMI and our urgent need for better treatment options.

The event was held at the Broad Institute in the heart of the MIT campus, which has become a hotbed of bioscience innovation and research. The Broad institute itself is bright and open, and conveys a sense of possibility. This was once a scruffy neighborhood and it was remarkable to experience the new energy flowing here. The Kendall Square area, at the center of the MIT campus, has been transformed by the influx of scientists and industry. This gift will continue to attract the best minds to continue the remarkable research momentum and help fill a critical need when funding from the U.S. government is uncertain.

The study compared the genomes of more than 37,000 people living with schizophrenia and compared their genes to people who do not live with the condition. The riddle that is the gene component to schizophrenia has vexed many but now the evidence base is rapidly expanding. Sorting out an enormous number of puzzle pieces and making patterns of them is the work of complex genetic assessment. The study identified 108 key genes (83 of which have not been previously linked to schizophrenia) in this analysis and the Broad Institute will do a deep dive of each of them. This study is only the first step; one of the lead scientists told me more papers are in press and will be coming out later this year.

I have invited the lead scientists to our national convention in San Francisco in 2015 to share their insights to our community. Steve Hyman, the director of the Stanley Institute for Psychiatric Research at the Broad Institute of MIT and Harvard and former director of the NIMH has emphasized an open source philosophy. This means that all the data sets will be shared with researchers from across the world. This approach will clearly advance the field faster. This is an advance in scientific culture as well as neuroscience.

In my work as a psychiatrist at the Prevention and Recovery from Early Psychosis (PREP) clinic I say “I don’t know” a great deal. My young patients and their families ask me, what caused these voices? How does the medication work exactly? Will reducing my medication after 3 years of no symptoms be a big risk to my recovery? For these and many other questions I offer my best understanding from the imperfect literature, and our theoretical understandings. For many of these questions we simply don’t have the building blocks we need. We simply need to learn more so better shared decisions can be made. My patients and families deserve better understanding to deal with symptoms that have so powerfully impacted their lives.

Patience and humility are of course key themes in this kind of basic science research. The researchers are humbled to say that they cannot promise a quick return, yet carry clarity of purpose: cancer was once a scary and seemingly unknowable illness that has very few treatments. Today because of better knowledge of the underlying science, there are new options being developed on a regular basis in the field of oncology.  This gift and this culture change and this line of inquiry will hopefully yield similar results in our field.

Tuesday, July 22, 2014

Helping Young People Share Their Experiences and Find Support

By Joni Agronin, NAMI Communications Coordinator

Last summer, when I was an intern for NAMI, I was fortunate enough to be able to attend a launch event on Capitol Hill for I listened to Congressmen and women talked about how important it was for the government to set aside party differences and address mental health issues in the coming year. I was there for the big reveal from the National Association of Broadcasters (NAB) of this brand new campaign that was aimed at teaching young people that it’s “ok2talk” about mental illness.

I remember furiously taking notes and thinking to myself-- this is awesome! But how come it took so long for something like this to be created?

The answer is because for so long, many people, especially parents were scared to have the tough conversations with their kids about mental illness and vice versa. Young people are supposed to be carefree and innocent. No parent wants to imagine their child struggling, feeling alone or depressed, or misunderstood.

But, the reality is that mental illness affects young people at an alarming rate. We know that 50 percent of all lifetime cases of mental illness begin by age 14 and 75 percent begin by age 24. We also know that early intervention and strong foundations of support are some of the best ways to lead individuals on the road to recovery. 

Ok2Talk was built as a forum for young people to talk about their mental health experiences and find support and solidarity among their peers. I remember at the launch event, after all of the politics and PR, a young woman named Ellie Hoptman from NAMI Northern Virginia walked up to the podium to make a speech. She talked about how hard it was for her to live with a mental illness and keep it hidden from her classmates until one day she finally spoke up and realized that she was not alone. Ellie said, “There were people out there like me, and it made all the difference in the world.”

Now, one year later, NAMI has been privileged with the opportunity to adopt this network of young people from NAB and continue to provide support to thousands of passionate, brave and articulate teens across the nation. The stories I read on Ok2Talk each day echo the things that Ellie said in her speech last summer.

"I don’t know why I decided to write this. I guess some part of me wants to reach out to someone that won’t judge"

“I know what it’s like to feel like no one cares. But, I got better and so will you.”

“I know it’s hard and you don’t see the point, but I promise, even though it sounds really cheesy, that all of it happens for a reason and you will come out so much stronger in the end.”

It’s amazing what a difference just being able to talk to someone can make. Support from a friend, parent, teacher or even a stranger can go such a long way.

Encouraging young people to speak up and ask for help saves lives.

If you want to share your story or just read the words of others please visit

Friday, July 18, 2014

National Minority Mental Health Awareness Month: The Time for Action Is Now

By Corrine Ruth, NAMI Policy Intern

In honor of National Minority Mental Health Awareness Month, individuals and organizations across the nation are speaking out about the need for increased attention to mental health and improved access to mental health services for diverse populations.

To Cecelia Williams, stigma is one of the most prevalent challenges she has faced in her role as NAMI Sharing Hope coordinator in southeast Texas. But she also knows that transforming the conversation requires a relentless commitment to “educate people about mental illness, treatment options and research.”

An Engaged Community is an Active Community

Building trust within diverse communities takes time and consistency, especially when it comes to increasing awareness about mental health. Education programs that acknowledge and reflect the diversity and values of a community appear to be effective forms of engagement.

That is why National Minority Mental Health Awareness Month is so important to Cecelia and many other leaders across the country. Gloria Walker, president of NAMI Urban Greater Cincinnati Network on Mental Illness has thought strategically about her Affiliate’s July community event because “it gets the word out to an underserved community of people with very little, if any, knowledge of mental illness and recovery and gets them talking about it.”

The Celebration is in Full Swing!

Community events, campaigns and initiatives help us bring widespread attention to the mental health needs of minority groups.  These events create a setting for individuals to discuss important issues and allow advocates to connect with local leaders and communities. Through music, art, food, speeches, presentations, book discussions and film screenings, we are sharing the message that mental illness impacts people of all backgrounds and that people of all communities need access to mental health care and treatment.

Cecelia partnered with local community organizations to sponsor a suicide prevention presentation on July 12 as part of a wellness series. Gloria planned a reception featuring a keynote speaker from the American Psychiatric Association Office of Minority and National Affairs, a breakfast panel and two breakout sessions to capture tangible plans of action on minority mental health advancement.

Developing the relationships formed through the process of putting on this event is a must,” said Gloria. Beyond the personal satisfaction, NMMHAM has allowed me and my Affiliate to increase our network of contacts.”

Here is a list of some of the great things other NAMI Affiliates are doing:
  •        NAMI of Greater Toledo is sharing information about mental health and NAMI programs at a local minority health fair – and they’re doing it in style by bringing the NAMI Ohio mobile mental health bus!
  •        NAMI Prince George’s County held a mental health forum at a local church that focused on mental illness and stigma in the African American community. Participants shared what it was like to experience mental illness and audience members were allowed to engage in productive discussion about the specific mental health challenges faced by minorities.
  • NAMI Cumberland Harnett and Lee Counties is hosting a discussion of the book, The Secret She Kept by Rhonda Tate Billingsley, which focuses on mental illness in African American family.
  •   NAMI Wisconsin has held a series of culturally diverse music events in local parks and public spaces. They’ve worked to share information about mental illness and distribute NAMI materials at each concert.
  •    NAMI Santa Clara County has planned a “Food Fun Dance Education Day” that features Asian and Latino dance and food presentations along with wellness instruction.

The list of NAMI NMMHAM events goes on. And there’s still room for you to get involved! We encourage you to reach out to your local NAMI to see if there are any events in your area that you can participate in.

Here are some ideas of what you can do to keep the momentum on minority mental health going:

·         Like us on Facebook
·         Tweet using #MinorityMentalHealth
·         Share your story

Thursday, July 17, 2014

Promise and Patience in Understanding the Brain

By Ken Duckworth, M.D., NAMI Medical Director

There is a growing recognition in both the U.S. and Europe that a fundamental understanding of how the brain works is an urgent priority.  This flows from the awareness that the public health burden of brain-based conditions is staggering, and that for the first time we have some truly promising tools to help us get there. This substantial scientific effort will take patience but it also holds much promise.

The approaches on either side of the Atlantic are quite different. Given how much of what we know from drug discovery is rooted in good observation and chance, it is hard to predict what approach will yield the best results.

In the U.S. President Obama announced the BRAIN Initiative, which will “seek to map the circuits of the brain, measure the fluctuating patterns of electrical and chemical activity flowing within those circuits, and understand how their interplay creates our unique cognitive and behavioral capabilities.”

In Europe the European Union’s Human Brain Project (HBP) seeks to model the human brain on supercomputers. Recently some scientists have formally criticized the EU approach, calling it premature. Regardless, both investments represent nearly simultaneous multiyear commitments to better understandings of the neuroscience we need so badly to advance care.

Understanding the brain better does not mean mental conditions are only about genes or biology. An important principle is that environment impacts genes and gene expression—this concept is called epigenetics. Environment could mean protective elements like love and holding or risks like viruses at certain stages of neurodevelopment or traumatic experiences. It’s important to think both and not either-or when thinking of psychiatric conditions and the brain and environment.

We have a greet deal to learn but have already come upon some important findings. We do know that the brain is more plastic—able to adapt and be shaped—than was first thought. Imaging the brain (fMRI, PET scans) have helped us move forward in basic functional understanding, but isn’t a clinically useful tool at this time.

On the basic science side, two major recent breakthroughs stand out. First, the ability to generate stem cells from adult skin holds great promise. In 2014, scientists have looked at nerve cell responses taken from stem cells from individuals with bipolar disorder to learn how they function differently than from people without bipolar disorder. Another recent basic science breakthrough is optogenetics, which is the ability to impact specific cells through light and modified proteins. These are not yet clinically useful, but will teach us a great deal about the human brain. That knowledge will lead to better interventions.

One of the challenges I have as NAMI’s Medical Director is cautioning patience even as I am so hopeful that novel scientific avenues will bear fruit. It is hard to know when and what new treatments and interventions can come from a more thorough understanding of the human brain. People want and deserve better treatments now, as there is a great deal of unmet need in the areas of brain disorders. Both a commitment to science to learn more and getting people what we already know works are essential.