“Your disease is not THAT important to us.”
Yes. This is how pharma companies, our source of relief, mostly view our ailments. If it doesn’t give them big bucks then it just isn’t that important. You could spend your life hoping that some big-shot has the same disease that you do, just so some money gets pumped into its drug; or go about anticipating your disease and popularize it enough. Your life is literally in your hands, however incapable you may feel they will be. Reality bites and life sucks big time. You’d end up feeling bad just because your ailment is not big enough. The last thing we’d want to end up hoping for is a worse ailment but with better therapy available. The only thing left to do is to strategize and contribute.
Here are some simple steps to do your bit:
1. Send an email across to pharma companies asking them whether the last antibiotic that they came up with has been researched and redesigned recently. The bugs are constantly changing and while, the doctors would fear to change medicines too often as they do not want a drug-resistance to develop, the pharma companies should be better prepared. This is especially true for seasonal ailments. You may have noticed but ignored that some medicines have stopped working on you the way they used to. Well, its time to demand a change of that medicine.
2. Be vocal about the side-effects that a medicine causes. We assume that ABC medicine will always have a side-effect so have stopped demanding for one that doesn’t. For pharma companies, its a simple case of demand and supply. Why improve if no one asks for it?
3. Cross question the doctor on his knowledge of other similar drugs available from other companies too, apart from the one he prescribes. Every visit.
4. Rely on genetic testing for some diseases. At least on those known alterations which have a significant chance of converting into a disease.
For a clinical geneticist, your blood is always important. I’d rather go to someone who appreciates my disease or the anticipation of it, than those who brush it under the rug. I highly recommend this confidence boosting measure. No matter what the result of your test maybe. Also this allows us to know whether our kids, are also susceptible to it.
5. Publicize your opinion on the medicines available for your ailment. Blog, write, talk, anything. Open and join forums. Find someone who shares your phlegm woes. Tag pharma social accounts to it.
Apart from cancer therapy, rarely any new medicine for other diseases is found lucrative enough for pharma companies to research on. Drugs don’t develop from thin air and a fair amount of money, work and time has to be invested in their research before they hit the market. Not that I have anything against the pharma companies, however they are a business and need to see a demand. Somebody has to demand. The scientist do their research work, but this has to be scaled up mostly by pharma companies. So while everyone is doing their work, to the best they can, so should we. After all, longevity is increasing and we just have to learn to live longer with our fellow bugs and inner defects. Peacefully.