Thursday, September 16, 2010

Returning to NAMI's Research Advocacy Roots

By Dr. Ken Duckworth, NAMI Medical Director

NAMI is refocusing its efforts and returning to its roots in research advocacy—looking for better treatments and models both at the brain science and service levels. We now have quarterly meetings with Dr. Tom Insel, director of the National Institute of Mental Health (NIMH), to continue to learn from the latest in science and to advocate for better treatments for our membership. NIMH also needs more resources, which  is another of our advocacy challenges.

Fortunately, NIMH has refocused its work upon better connecting with the public health burden and real-life challenges of people living with serious mental illness. Dr. Insel  said he heard one message loud and clear from our membership at the 2010 convention in Washington, D.C.—that we need better treatments. A few areas from the NIMH discussions I found interesting:
  • A major iniative is dedicated to reconceptualizing the way brain functions work—and don’t work—together based on new data in neuroscience and genetics. Examples of the new conceptual model being developed (Research Domain Criteria—or RDoC ) organize everything we know about brain structure genetics and functions along key lines such as learning, memory or fear. The idea is to supplement the current diagnostic schema undergoing revision by the American Psychiatric Association (APA) with additional knowledge gleaned from basic research. I was drawn to this approach as it may yield a return on the genetic research that, while stimulating for science overall, has produced few tangible advances for our members.

  • NIMH has sponsored  research on ketamine as a possible antidepressant. This is a complex medication used in anesthesia and also a street drug (special K) that offers interesting models for the treatment of depression, especially bipolar depression, which is notoriously hard to impact.  The search for better medications to treat serious mental illness is of course a principle NAMI advocacy point.
At the service level , Dr. Lisa Dixon, professor of psychiatry at the University Maryland, and her team have demonstrated the effectiveness of NAMI’s Family-to-Family program in a randomized controlled trial (RCT). Look for publication of this work in the fall. RCTs are the gold standard for evidence and this is a major development for NAMI. The study is significant to our community in two ways. Firstly, NAMI members were fabulous in the way they organized in support of this work. In addition, many families had to take the chance of being assigned to the control (waiting) group of the study.

I can’t express how amazing our membership is. When people need Family-to-Family they are typically in a crisis. This selfless and heroic spirit of helping others to test how effective the program is speaks volumes about who our members are—truly giving individuals willing to put their own needs on hold to make a larger difference.


Anonymous said...

It is encouraging to hear that NAMI is getting back to its grass root efforts of supporting research to find better treatments for its members.

This would be a prime time for NAMI to discuss in this article the provision in Obama's Health Care Reform for 30 Centers of Excellence for Bipolar and Depression across the country that were approved by law.

The bill authorizes $100 million for each of the fiscal years 2011 through 2015 and $150 million for each of the fiscal years 2016 through 2020. However, Congress will have to appropriate funds each year as part of the appropriations process for SAMHSA.

This past July 29 Congress appropriated 10 million dollars which is a fraction of the amount of funds needed. It is enough for one coordinating Center.

When the Centers of Excellence for Cancer were initiated in the 1970's President Nixon appropriate all the funds that were needed at once.
The Centers of Excellence for Cancer reduced the mortality rate for cancer by 40%.

We have not seen results like this for any brain disorders.

NAMI needs to get behind these Centers and push for funding the next 5 years. Did anyone hear anything about these Centers at the National Meeting in Washington.

If NAMI is really getting back to grass root supports of research
why isn't it advertising these
Centers of Excellence for Bipolar and Depression.

The words need to match the actions. NAMI don't just talk the talk, walk the walk.

I think a much better job could be done advocating for these Centers.
This is a golden opportunity that can not be passsed up.

I even contacted SAMSHA who would
pass out the funds for the Centers once they applied and inquired why I did not hearing anything regarding this provision in the media when everyone was so hot to discuss Obama's Health Care Reform.
I was told that National Media have to pick this story up first and then SAMSHA will report on it.

That seems self defeating. This project is for SAMSHA so why wouldn't they be shouting about it from the top of the trees? Instead they just wait for someone else to take notice.

Something is terribly wrong with the lack of information and support behind this project that would provide a network of specialized hospitals that could potentialy provide better treatments.

There is nothing that makes sense to me about the way this is being handled.

Thanks for listening.

Michael said...

Finding the root cause of “mental illnesses”, is a worthy cause. My doctors thought, I had schizophrenia. When I got better, they thought bipolar. They were all wrong. I found, when I recovered, that I had traumatic brain injury at birth, from forceps. My symptoms were just from PTSD. My symptoms were trying to heal me. I learned how to cooperate with my symptoms by forgiving what ever they were, so I recovered. See: Others have discovered the same facts. See: his book “Babies Need Mothers” and and Google “cause ptsd schizophrenia” for some more clues.

Barrel of Monkeys said...

Definitely a step in the right direction. Never forget that the primary goal is addressing real-life challenges of people living with serious mental illness.

Barrel of Monkeys said...
This comment has been removed by a blog administrator.
Hakon Heimer said...

Reply to Anonymous:
I'm guessing that the reason that SAMHSA cannot push this problem publicly is that government officials are not allowed to "lobby" for increased funding for their departments.

Thanks for this excellent post, Ken!

Anonymous said...

What about a Center of Excellence for Schizophrenia? If you want to get back to NAMI's advocacy roots that is where your should be going. Schizophrenia, the most devastating of the mental illnesses is and has been neglected for a very long time. There seems to be a prejudice within NAMI against any advocacy for schizophrenia. I think it is time for those of us with loved ones suffering from schizophrenia to start over with a TRUE advocacy group. After 30+ years with NAMI I have found no real advocacy going on in the area of schizophrenia. Shame on NAMI -- your founders would be ashamed.

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