Posted by John Braganca (142.150.128.235) on August 09, 2000 at 06:08:36:
In Reply to: 36,000,000 posted by John Braganca on August 08, 2000 at 19:33:19:
Thanks for attempting the guilt trip.
However, and this is a big however, I have no idea what you are talking about: what public education programme are you talking about and how does it directly affect me?
If your're referring to this site then you are mistaken. THis is an excellent site but it does not mass target Net users like a flashing ad. A book in a library by itself does not constitute a public awareness programme.
A maximum of 36,000,000 hypothetical cases worldwide hardly seems like the basis for declaring a lucrative market for pharmaceutical companies. If such a market does exist, however, then why not petition existing headache foundations to lobby drug manufacturers to tap into this market? If there is money to be made, don't you think they'll be there?
As for public education having a negative influence on the resistence of health insurance companies to covering expensive remedies, perhaps individuals should take a closer look at their policies and either upgrade them or change insurers. A prescription should not be second-guessed by the insurer unless a clause in the policy allows it.
Personally, I think all this talk about getting clusterheads on 20/20 or whatever have you is all about glorifying whining.
The only benefit I can see to a public education programme is that of making first or even second-time sufferers aware of their plight. However, with less than 1% if the general population suffering from CH (and then only a minority of these sufferers are chronic) the expense of such an undertaking is hardly justifiable.
As rare as the affliction is, even doctors should know about clusters. If your doctor hasn't a clue, get a new doctor.
Anyway, what would a nationally aired "special" accomplish in the long run? Do you think millions will even recall what they saw the night before? Do you think a clusterhead's boss will see it and decide to keep him/her on even though his/her absenteeism is sky high? Do you think pharmaceutical and health insurance companies will suddenly become enlightened and open up their pocketbooks?
The kinds of changes you want don't come through a 10 minute sound-bite. They come about because of economic forces. 36,000,000 potential suffers in a world divided by trade barriers, economic disparities, and varying drug legislation makes them a difficult market to tap.
If your friends distance themselves from you because of clusters then get new friends.
I will admit that national exposure , however brief and glamourized, still has benefit: it would be fun.