"How's Clare?" Why this work is important.

The U-Haul is coming on Tuesday, and my house is a mess, and the news is all about Health Reform and the Ted Kennedy. Then there is work: Thursday was frustrating. A 13 year old patient of ours had his Daytrana denied by MassHealth. Daytrana is a patch form of Ritalin, one that is quite expensive, and MassHealth rightfully wants us to us it after we have tried other things first. This kid had tried Methylphenidate and Concerta, without much success; Daytrana worked for the last 1.5 years and, as best I can tell, was paid for by MassHealth without a problem. Suddenly, it's a problem. Apparently, there is a written, but not publicly available policy that says that you have to have failed 3 forms of long acting stimulant before you can get Daytrana.

The family is one of the "working poor", with MassHealth as a supplement to private insurance. Their private insurance would pay 50% of the cost of the medication, leaving them with a $179/month out of pocket to stay on the medication. It had been paid for over the past 1.5 years out of their "spend down", which has something to do with their being employed. But $179 per month? They can't afford it. So, on the day before the kid starts 8th grade, I have to switch a marginal student off of the medication that works to a new medication that may not work to "try it out"- if he fails Adderall and Focalin, THEN we can get him back on the medicine that works.

The family sighed, and agreed to the change, but I was frustrated: if we had known of the problem in June, we could have done the required "trials" over the summer and not disrupted school. The needs of the system were served, but it is hardly personal. And mental illness is nothing if not personal.

In pondering the meaning of this incident, I came across this about the Senator in the Globe, and thought is appropriate to quote here at length. Although the Wellstone-Domenici bill was Patrick Kennedy's baby, the Senator's fingerprints were all over it. This is from an article by Kevin Cullen, that was in the Globe:

About 20 years ago, Senator Pete Domenici, a Republican from New Mexico, found out that his daughter Clare was schizophrenic. Domenici and his wife, Nancy, struggled to get help for Clare, and Domenici became an advocate for families of children and adults with mental illness.

Thirteen years ago, Domenici and Paul Wellstone, the liberal senator from Minnesota, teamed up to sponsor a mental health parity bill, so that people with a mental illness would be treated the same as those with a physical illness. After Wellstone was killed in a plane crash, Domenici asked Kennedy to step in as the bill’s cosponsor. Because of his sister Rosemary’s condition, Kennedy was always empathetic to those with mental disabilities, and he quickly agreed.

As the legislation’s progress waxed and waned, whenever Ted Kennedy saw Pete Domenici, he would ask one question: “How’s Clare?’’ And then they would talk about getting the bill through. Last year, when President Bush signed the bill into law, Ted Kennedy called his old friend Pete Domenici. Kennedy was in Hyannis Port, four months after being diagnosed with brain cancer, and Domenici was in Washington, about to retire from the Senate because he has a progressive form of brain disease.

The two old senators reminisced a bit and thanked each other for getting the law passed, and then Ted Kennedy said, almost apologetically because he had almost forgotten: “How’s Clare?’’

In the end, that's what the work is all about- building a system so that when you ask people "How's Clare?", they have something good to say about it. Connecting the policy to the personal is hard; Kennedy was the master at it, and we need to get better at it.