This Is MS Multiple Sclerosis Community: Knowledge & Support

I'm trying to think about how to proceed in the lobbying effort.

Here in Canada, it's not the hardest thing for any group of twelve constituents with letterhead and an email address to get a meeting with an MP (federal representative) or, even easier, MLA (provincial). In my experience, that MP or MLA usually only nods and smile while an aide pretends to write things down until - unfortunately - their time is up , of course, but every little bit helps.

Still, once the meeting was set up, there would be some numbers it would be useful to have to hand. Some - drug cost per patient, number of MS patients in the country, and so on - are easy enough.

But to spitball the cost of, say, a dedicated diagnostic centre for CCSVI, does anyone have some rough numbers for:

- cost of a machine to do the trans-cranial doppler ultrasound
- cost of one of Zamboni's 3-day training seminars
- average salary of an ultrasound tech

I think of a diagnostic centre as a place to start because if CCSVI pans out there are going to be AN AWFUL LOT OF TESTS NEEDING TO BE DONE.

And at this stage any area that has such a clinic would begin drawing a large number of outside visitors. In terms of a provincial budget, I’m guessing it might become a paying proposition fairly easily.

-d

Funny approach. Well, at least here are some prices for doppler ultrasound:

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"There is only one good, knowledge, and one evil, ignorance." Socrates

Wow, that's cheaper than an order of magnitude or 2 than I expected (or I might have been cleverer enough to check ebay myself).

Among the useless time I’ve spent lobbying politicians in my life, one of the times that actually ended up turning into something was helping produce a document arguing for the expanding the role of a private clinic - but keeping it within the Canadian single-payer medicare system.

We used both broad picture stuff and some specific numbers about how it might save the system money (and bring in other patients from other jurisdictions, which I was given to understand was the same as free money since the other provinces would be paying for it). It didn't turn out quite the way we were proposing, but role of the clinic WAS expanded and the patients and the system did benefit.

The key, it seemed was giving the politicos enough concrete, specific information (numbers) to hang an practical argument for changing the rules on, along with the big-picture stuff to give everyone some political cover.

"All right, they do it like that in other places with the same general political philosophy … so it can't really be evil ... plus it will save the province money... Okay, but we'll buy you out and claim it's our idea."

I think a useful line for lobbying (in a couple of months, if the next studies turn out well) will be: look the evidence is strong, so start early at modest cost to make it look like you care, then as it moves along save (even make) money for the system - and end up looking like a hero!

Oh, and because it's the right thing to do, of course.

-d

Sorry dunkempt, didn't got your post right. Thought you wanted to build your own clinic...

Recently I've read an article about som DYI-biologists having bought an used gene sequencer for some hundred bucks on ebay, now playing with their own genome...

As for the other costs, there's much more to be paid, buildings, staff, computers etc. I don't think you can come to a realistic cost projection without some background knowledge of the medical business. Or some more.

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"There is only one good, knowledge, and one evil, ignorance." Socrates

That's true, of course - and my areas of ignorance only grow with time.

But many of the "clinics" here (like the biggest MS clinic in our province) are really just a few rooms where specialists meet patients in existing medical facilities.

And the standard facility costs are, well, standard. Hospitals and Universities shift space (and staff) around according to demand all the time. In the small (half-successful) experience I have lobbying about medical matters, it was the unusual costs that we needed to explain and justify. Just as I wouldn't feel I would have to provide my own numbers about the financial benefits per visitor to the province.

Maybe getting some organization (oh, say, a national MS society…) to build a free-standing specialized CCSVI facility will eventually be useful. But that's where we need to start.

If a politician can say to health bureaucrats, "look, we know it only costs X to get the the specialized training, and only X to get the equipment," then the area of discussion is pretty contained. And it becomes harder to ignore constituents with that suggestion.

Back when I thought I "only" had Chronic Fatigue Syndrome, I was part of a CFS group who met with our deputy premier about a similar matter. To be honest, that wasn't the time that was half-successful (maybe it would have been if there had there only been some recent, highly publicized, revolutionary, yet fairly simple and clear diagnostic procedure for CFS ) - but having preliminary numbers to suggest what a modest investment it would be vs. the size of the problem was what made him shift from humouring us with boilerplate to actually engaging with the problem.

I wouldn't go into such a meeting without reviewing information about salaries for radiologists and ultrasound technicians - along with press releases about other recent provincial health initiatives ("government announces $24,000 for pilot program on dentistry and self-esteem") - but really it's only the special costs I would worry about providing at such a preliminary point. I don't know why I had it in my head that the ultrasound equipment was extraordinarily expensive, but (thanks cah!) that's essentially trivial.

Surely (in terms of the provincial health budget) sending people to Italy for three days of training would be trivial too, but details always help sell an argument - anybody heard any?

Maybe we could try shaming them by saying MS patients would raise those dollars ourselves...

-d