Support Group Hijacking, Just Whom Is Your Group Supporting?

Can your well-meaning support group get hijacked by other interests? This question came up recently after I announced to our group that we would be having a talk on a new form of the front-line medication for Parkinson's, Levodopa/carbidopa. The talk was to be given by a representative of the maker of the medication. A member of the group, who had worked in the pharmaceutical industry, objected. "Isn't the direct marketing of medications to patients bad ethical practice?"

Yikes!

There was an unspoken question or two beneath the spoken inquiry. "Pete, are you shilling for Big Pharma now? Or are you merely their patsy?" To be fair, I'm not sure that these unspoken questions were dangling in the mind of the group member who spoke, but they rang loud and clear to me as implications of the first  question. Had I unintentionally allowed a company to use our time for their own purposes?  I holed up at home and thought about it. Here are my conclusions.

First, on direct marketing (DM). Can DM cause problems even if no deceptive  practices are involved? The answer is yes, it can create pressure on doctors and pharmacists to dispense medication that might not be medically necessary. The result: wasteful spending and the potential exposure of the patient to unpleasant side effects of the medication.

But this potential harm must be balanced by the patient's need for information, a need arising from our expanded role in our own treatment. We are now expected to be more involved in and assertive about our care. This is especially true of  Parkinson's patients without access to a movement disorders specialist. It's hard for the general neurologist to be current in every aspect of a disease and its treatment. A case in point: local neurologists unaware of the benefits, or even the existence of LSVT Big therapy, a powerful tool for symptom management.

It falls to the patient to be an advocate for new therapies or procedures. Understanding these new options, or just discovering them, can be the outcome of talks sponsored by the people who dispense them. Knowledge empowers the patient, which most of us agree is good.

This leads us to the question of the role of the support group. A primary benefit of the group is the exchange of information about dealing with PD. With that in mind, if I am going to make a mistake in regulating the flow of information, I am going to make it in favor of too much information, not too little. If the result is more pressure on doctors to prescribe a certain therapy, then doctors will have to resist that pressure where the outcome would result in harm to the patient. Patients have a duty as well, to understand as best they can the particulars of their medical situation, and the arguments the doctor makes concerning treatment.

Most patients grasp that a representative of a company likely has the interests of the company close at heart, and can factor that into their perception of the presentation. And there will always be those pitching snake oil that have to be weeded out. But "too much information" is rarely the problem in dealing with Parkinson's Disease.

I would be interested in hearing from other support groups if they have had discussions of this issue, and what  conclusions they came to. Comments welcome.

Anchorage Area Parkinson's Activities For August

Time for a gaze into the mystical, magical, all-seeing, all-knowing orb, the Parkinson's eight ball, for a glimpse of the immediate future. The first thing I see is... there will be no teleconference again this month. The buzz on that is the teleconference will resume in September. So your next Monday is free time!

 We will have a special, bonus meeting on THURSDAY, August 18 at 5:30 in the afternoon, in our usual haunt, the Pioneer Home fifth floor West lounge. This meeting will be an informational presentation by Kendall Cook of Abbvie on their pump-administered Levodopa gel infusion. If you're asking yourself "What the heck is pump-administered Levodopa gel infusion?" you are the perfect candidate to attend this informational  presentation, and get knowed up on this therapy, which just recently was approved by the FDA. The session, with question and answer period, should last about an hour.

You'll want to rest up Friday so as to be ready for our regular meeting the following Saturday, August 20, when we will have a pair of therapists in to talk about the Lee Silverman Big and Loud physical therapy program. Based on the concepts that guide Lee Silverman Voice Therapy, Silverman Big and Loud has been shown to substantially improve symptoms in patients with PD.

That's it for August, be well, and well-medicated,

Peter