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Posted by on Mar 1, 2007 in Health, Society | 5 comments

Ignorance, Enlightenment, Leadership

In Washington yesterday and today on business, I took a break last night to attend a Congressional reception hosted by TSA, the Tourette Syndrome Association.

Senator Hillary Rodham Clinton was an honorary co-chair of the event, for which she helped arrange the LBJ Room in the U.S. Capitol. She also delivered brief remarks at the very beginning. Unfortunately, I was about 15 minutes late and missed her talk. But I did have the honor of hearing remarks from an amazing cast of Congressional leaders, including House Majority Leader Steny Hoyer, Senate Majority Leader Harry Reid, Congressman Chet Edwards (D-TX), Senator Ben Cardin (D-MD), Senator Gordon Smith (R-OR), and the granddaddy of health issues, Senator Ted Kennedy (D-MA), who thanked Senator Smith for his leadership in making the Senate side of the Hill more aware of Tourette Syndrome (TS).

If I remember correctly, Smith has a brother with TS. Our family has also been impacted by the disorder. Regular readers of Central Sanity may recall that our only son, now 17 and a junior in high school, has TS, which is “a neurobiological disorder characterized by tics – involuntary, rapid, sudden movements and/or vocal outbursts that occur repeatedly.�

Various medicines and therapies can help control the tics, but the precise cause of TS remains unknown and, as of today, there is no cure.

Through the first link above, readers will find that, “Although the symptoms of TS vary from person to person and range from very mild to severe, the majority of cases fall into the mild category.� True enough. However, our son – whose few years on this planet have been anything but mild in any aspect of his life – is one of the minority with an extremely severe form of TS.

Diagnosed around nine or 10 years old, he went through a living hell in his pre-adolescent years, suffering through violent and often painful tics that caused deep back bends and spasms of his internal musculature, along with the more typical twitches and vocalizations, all of which was complicated by OCD and other variables.

I was traveling a lot at the time; much more than I do now. The few days I was at home, the situation was bad enough that I thought he should be institutionalized. But his mother – who cared for him 24/7 and went through that living hell with him, each and every step of the way – refused. With the most remarkable, dogged determination I’ve ever seen in any human being, she nurtured him back to health, with assistance from a series of doctors and therapists and educators. Eventually, the doctors found the right mix of medicines, and those – combined with a relatively brief stint in special schools plus regular therapy, plus his evolving maturity and understanding of his disorder – allowed our son to return to “normal� classroom settings by eighth grade.

Today, he is the most remarkable young man: charitable, funny, talented, smart, and involved.

Sadly, if our son had gone through the same experience a generation prior, the outcomes might have been much different.

A former boss of mine had a brother with TS. The ignorance of his family and doctors at the time his brother was a child and first exhibiting signs of TS led to a compromised adulthood. That brother still requires special attention and care to this day.

In the 20-plus years between the childhoods of my former boss’s brother and my son, the TSA was instrumental in raising awareness of the disorder, securing research funds, recruiting doctors to study and treat the disorder, and passing helpful legislation.

But more work remains to be done, including passage of a bill that will further equalize the insurance coverage for physical, mental, and neurological disorders. Known in the last Congress as the Senator Wellstone Mental Health Equitable Treatment Act of 2005 (H.R. 1402), that bill will likely be re-introduced next week, with Ted Kennedy’s son, Congressman Patrick Kennedy (D-RI), and Congressman Jim Ramstad (R-MN) the lead co-sponsors.

A key staffer on this bill in Congressman Kennedy’s office, Michael Zamore, informed me earlier this week that they are looking for additional co-sponsors, from both sides of the aisle. To that end, I’ve contacted the office of my Congressman, Todd Akin (R-MO), asking him to sign on as a co-sponsor, and am doing the same with other offices where I have a good working relationship.

The bill does not require insurance companies to offer mental health benefits, but it does require them – if they already offer such benefits – to simply put them on par with physical health benefits. Even better: According to a December 28 Associated Press story, a study last year in the New England Journal of Medicine “found that the government’s decision to provide parity to federal employees in their health insurance plans did not drive up the cost of mental health care.�

Before my son went through the TS experience, I was one of those people who thought non-physical disorders were over-played and over-diagnosed: “It’s all in their heads; they just need to buck up and deal with it.�

How utterly stupid I was.

Then again, maybe no one can fully appreciate just how debilitating these disorders of the mind can be, until you see one of those disorders almost destroy someone you love.

Hopefully, readers of this post are more enlightened than that. And hopefully, you’ll take the time today to contact your Members of Congress, to encourage them to co-sponsor the mental health parity bill that Congressmen Kennedy and Ramstad are supporting.

Our family – and millions of others – would appreciate it.

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