Patrick Kennedy is beginning a new chapter, but his dedication to mental health issues continues.
The former Rhode Island Congressman retired this year after eight terms in office, where he championed mental health causes, authoring the 2008 Mental Health Parity and Addiction Equity Act. The cause remains a personal one for Kennedy, who himself had a long-term struggle with depression and addiction and he has recently launched a 10-year initiative, One Mind for Research (1mind4research.org), which aims to unify research and funding initiatives for seemingly disparate brain ailments.
Kennedy co-founded the initiative with California businessman and philanthropist Garen Staglin, who has raised millions of dollars for brain research since his son was diagnosed with schizophrenia in 1990.
One Mind for Research aims to relax focus on individual neurological disorders – such as tumors, addictions, PTSD, autism or Alzheimer’s – and instead bring together scientists, policy makers and advocates to support basic research on the workings of the brain and increased awareness and funding.
“When we’re disease-centric as opposed to brain-centric, it’s a lot more difficult to be of one voice,” Kennedy says. “There are 600 neurological disorders. We’re never going to achieve the political power of a united effort unless we unite.”
“What neuroscience needs is political science,” he says. “We need the political will. That’s the only thing that’s missing in this equation. But it’s an essential ingredient to success.”
The project held a three-day symposium in Boston this summer, corresponding to the 50th anniversary of when Kennedy’s uncle, John F. Kennedy, pledged to send a man to the moon. The Boston kickoff emphasized the “new frontier” for our generation â€“ brain research.
Kennedy says that it’s the right time for an organization such as this one, partly because some advocates who might traditionally be interested in “protecting their own turfs” are recognizing the challenge for funding. He notes that funding from both government and industry has decreased for neurological disorders.
“The paradox is that we’ve never had better opportunity in neuroscience,” he says. “We have the tools for discovery that have never otherwise been available in history. So what we’ve got is the perfect storm. We’ve got the crisis in funding, but at the same time, there’s this enormous opportunity to make great strides in discovery.”
Kennedy praised neurobiologist and Harvard Provost Steven Hyman, chair of the One Mind for Research Scientific Advisory Board, for his leadership with the 10-year blueprint. Kennedy says the various “silos” of neurological disorders share more in common than they do differences. Playing off President Bill Clinton’s declaration about the economy years ago, Kennedy says “It’s the brain, stupid.”
He adds that many terms, including “mental health,” still carry a stigma. “Stigma is the biggest challenge we have by far.”
“We need to change the language here to ‘neuroscience,’ to ‘brain illness,’ because we need to focus it back on the physical and scientific nature of these diseases.”
Kennedy says it’s a civil rights issue. “No one wants to be discriminatory but the reality is people who have any kind of brain disorder, whether it’s addiction or Alzheimer’s or autism, they are marginalized. One of the worst perpetrators of that is our health care system, which itself treats people with neurological disorders as if they were less than legitimate medical issues. You can’t have a separate system and truly treat the whole person. We need to today enforce the same civil rights approach for mental health which says that mental health is not separate but equal â€“ it’s health care. So we’re not going to call it mental health, we’re not going to call it separate. We’re calling it health care and that means that we need to change the whole focus of our healthcare system so it does not continue to segregate and marginalize people with brain-based diseases.”
The need to research the brain scientifically will not only result in more discoveries but also ideally in less misunderstanding and ignorance in the field, he says.
Kennedy adds that he is still working to get stronger implementation of the 2008 parity law. “What’s going to be our catalyst for strong implementation is the national urgency to treat our veterans for the invisible wounds of war that are claiming so many of their lives through epidemic suicide rates. So my message to everybody in the community is â€“ our fight is the veterans’ fight.”
By Pamela Berard