Here’s my interview with Jewel. Note: The podcast has some unclear audio, but it is worth listening to Jewel!
Patrick Kennedy has been a relentless fighter for the rights of people with brain disorders to have their diagnoses covered by insurance like any other medical condition. His focus has now become understanding the etiology of brain disorders and changing the way Americans view them by looking at them through the eyes of our soldiers.
It is not possible to report the exact numbers of soldiers who have come home with traumatic brain injuries (TBIs) or post traumatic stress disorder (PTSD), because the Veterans Administration can only track soldiers who sign up with it. Further, these injuries can slip by undiagnosed in both veterans and active duty soldiers both because the soldier may not relate the symptoms to injury and because the symptoms may be considered by the soldier as signs of weak moral fiber and he or she may be unwilling to seek treatment. However, it is clear the numbers stretch into the hundreds of thousands.
Invisible wounds in the brain are no less debilitating than lost limbs. In fact, they may be more debilitating (which is not to take anything away from the pain and suffering of any wounded soldier). PTSD affects a region of the brain that, when damaged, plays out in destructive behaviors that have led to an unemployment rate among some groups of veterans that is double that of civilians and to the breakup of families. As a result, the invisible wounds scar those who surround the affected soldiers, and they–their loved ones–have now become the newest victims of war.
Worse, PTSD, with its nightmarish flashbacks, has too often proven too much for even strong soldiers to bear. Suicide rates nearly doubled between 2009 and 2010, according to an Army report on Guard and Reserve Soldiers.
“We can’t allow suicide to claim more of our soldiers’ lives than killed in action, and right now it is,” Patrick Kennedy said. “[I]t’s precisely because these wounds are invisible that our response to these wounds have been inadequate,” he said.
“Most people assume [PSTD] will be covered by the VA,” but most symptoms will manifest over time “and will not be treated with the same urgency that someone with a … a visible wound of war will receive,” Patrick Kennedy said. “Our nation’s heroes, our veterans, need the most generous application of … mental health parity that can be [provided] in terms of these benefits.”
(While serving in Congress Patrick Kennedy introduced the Paul Wellstone Mental Health and Addiction Equity Act. Patrick Kennedy continues to work to get the Mental Health Parity and Addiction Equity Act of 2008 fully implemented. The Parity Act requires health insurers that cover mental health to provide the same amount of coverage as they do for other illnesses.
“I see the epidemic of suicide by our soldiers as the result of not only the lack of good therapeutics and screening and diagnostics and treatments, I see it as a direct result of stigma,” Patrick Kennedy said. If these soldiers were wearing their wound in prosthetics, no one would question their wounds as legitimate or question their moral character or fiber, he continued.
“[Our soldiers] suicide rates are the Sputnik for our generation,” Patrick Kennedy said. He pointed out that not treating these invisible wounds is a national security problem. “Among those [soldiers with these invisible wounds] are the people who are going to be in the [National] Guard and the Reserves,” he said.
The key, Patrick Kennedy said, is “making sure that these veterans don’t get left behind,… [and making] sure that they don’t suffer twice… the indignity of losing their job or falling into healthcare bankruptcy, because of the untreated wounds of traumatic brain injury and post traumatic stress disorder.”
At this point “we need to ensure that the politics align, so that the federal government, and private health insurers, and private employers understand that it’s in their interests to implement [mental health parity], in other words, that’s it’s a cost saver,” Patrick Kennedy said. As evidence he noted that in this county, the Fortune 100 companies provide the best mental health insurance programs, “because they know it’s the key to their workforce being a productive workforce.”
Patrick Kennedy has a different reason for helping soldiers and all Americans with brain disorders — it’s right thing to do, he said. He added that we all owe a debt of gratitude to the service people who are preventing another 9-11.
On my blog on The Huffington Post, I wrote about my interview with former Congressman Patrick Kennedy and his fight for parity in medical coverage of the brain – no more carve outs. Years ago he pointed out to me that health insurers don’t carve out parts of the kidney, why should they be able to carve out parts of the brain? I thought that was a good point.
The day I interviewed him, Patrick Kennedy was meeting with the Department of Labor (DOL) and the Department of Health and Human Services (HHS) on fully implementing the Mental Health Parity and Addiction Equity Act of 2008. He wants to make sure “we get the best regulations possible that will effectively implement the spirit of the parity law, which is that no one should be denied medically necessary treatment for an illness that is a mental illness,” he said.
HHS and DOL are in the process of putting regulations into place to implement “the requirement of all health insurers to treat the brain as an organ of the body” to make sure all the symptoms of neurologically-based disorders are adequately covered, he said.
However, and here’s where the rubber meets the road: We need to make sure the regulations are written to ensure the right treatments and coverage so as to make certain people are treated the same for a mental illness as they would for any other physical illness, he said (which is to say, no loopholes).
The intent of the Parity Act “won’t matter if it’s not put into practice,” Patrick Kennedy said.
Patrick Kennedy: Moonshot Mission, Houston, We Have Problem
In my recent interview with Former Congressman Patrick Kennedy for my blog on the Huffington Post, he spoke about Moonshot, his project to launch the study of the brain as a whole to determine the overlap of neurological conditions and come up with new treatments.
During that conversation, Patrick Kennedy expressed concern that many drug manufacturers are backing out of new drug development for brain disorders. Even though drugs, such as the blockbuster Prozac, are the industry’s biggest moneymakers, new drugs are not being developed.
“They have not come up with a significant new breakthrough in neuroscience in a generation!” Patrick Kennedy says. He attributes this failure to the Food and Drug Administration, saying that the rules of the game aren’t defined in a way that gives confidence to the venture capitals that, if they invest in the enterprises that do the research, they’ll benefit from it. The FDA does not have a regulatory model that’s conducive to the complexity of this type of medical research, he says. On the high end, it the industry claims it costs $1.26 billion dollars to bring a new drug to market, and it has less than a 2 percent chance of success. So, the industry’s money is better invested in a “me, too,” drug.
So all you’ve gotten is “me, too” drugs. “None of us knows this because we keep thinking that the son of Prozac is a new drug, when it isn’t. They’re all the same,” he says.
On the high end, it the industry claims it costs $1.26 billion dollars to bring a new drug to market, and it has less than a 2 percent chance of success. So, the industry’s money is better invested in a “me, too,” drug.
A Conversation With Former First Lady Rosalynn Carter About Stigma, Discrimination, and Brain Disorders
Former First Lady Rosalynn Carter has been an unrelenting crusader for people suffering from mental illness (which I refer to here as brain disorders). For more than 40 years she’s been working on promoting awareness of the issues, public policy, making health care insurance coverage for these brain disorders comparable to traditional health care coverage, and reducing stigma and discrimination against the people who suffer from these brain conditions.
I spoke with Rosalynn Carter about stigma and treatments.
Rosalynn Carter emphasized that “mental illness” is “an illness like any other illness.” It can be diagnosed and treated, and almost everyone suffering from one of these disorders can be helped. The problem is access to help and the stigma associated with obtaining healthcare.
Much of the stigma related to these brain disorders was created because of our nation’s past history of institutionalizing people with these illnesses. As a result, Rosalynn Carter’s efforts have focused on educating people on these disorders in order to reduce the stigma associated with our nation’s health practitioners having gone to such extremes as removing people from society simply because their symptoms were misunderstood.
Stigma in these modern times has not changed much. In fact, Rosalynn Carter said it may even be increasing. It is difficult for her to understand why the stigma still exists today when at least one in four adults in the United States is diagnosed with a mental health condition, she said.
Through The Carter Center, Rosalynn Carter has focused on strategies to reduce stigma and discrimination.
As with any form of prejudice, the answer begins with education.
Rosalynn Carter stressed the need for internists to be trained to recognize symptoms, make the diagnosis, treat the condition, and know the resources in community for referral and support. However, she found, after enormous efforts, that medical schools were resistant to incorporating this type of coursework into their curriculums, and there is no umbrella organization that can make it a requirement.
The Carter Center for Mental Health created its Primary Care Initiative to tackle this problem. It is an especially important initiative, because many primary care physicians are not well trained on diagnosing or treating these brain disorders. Indeed, according to the Carter Center, depression is too often misdiagnosed and only one third of patients treated for depression in the primary care setting have any type of meaningful improvement in their condition. (This may be due to ineffective treatments. See JAMA article.) At the root of this problem is stigma among medical practitioners, despite the improved understanding of “mental illnesses” being biological brain disorders no different from any other brain disorders.
As a result, people who suffer from these brain conditions continue to feel the stigma and are embarrassed to seek professional help. Rosalynn Carter would like to see medical centers expand into one-stop shops, where various practitioners would practice so that consumers don’t feel stigmatized getting treatment, and, of course, she wants to destigmatize brain disorders. She added that there is a need for more community centers at which to get treatment. (Georgia, she noted, has a Medicaid-paid peer pairing program — those treated helping those getting treatment — that’s successful.)
The media is another area where Rosalynn Carter focuses, because the media has contributed to stigmatization of these brain conditions. Too often journalists and reporters refer to the symptoms of these brain disorders as “bizarre” and other derogatory terms. To combat this problem, Rosalynn Carter created The Rosalynn Carter Fellowships For Mental Health Journalism to educate journalists.
On an individual level, stigma can be reduced through interpersonal experiences, Rosalynn Carter said. She would like to see neighbors getting to know neighbors and co-workers getting to know co-workers with these disorders. After seeing that they’re okay and that they’re raising families, she hopes the stigma will fade. She also believes it helps when celebrities reveal that they have been diagnosed (and treated for) a brain disorder (as has Emmy-award winning Patty Duke. Look for my interview with her in my next blog posting.)
Rosalynn Carter recently led The Rosalynn Carter Symposium on Mental Health Policy, which focused on building services and support for children at risk for developing brain disorders related to psychological trauma.