So many of you may have seen the Ice bucket challenge going around on the internet recently. For people that don’t know its in aid of raising money for a charity ALSA who support people with ALS (Amyotrophic lateral sclerosis) or other wise known as Motor Neurone disease in the UK.
Motor neurone disease is terrible.
The reason that I have chosen to share this video is that it shows someone whose family has been deeply affected by the disease & shows a glimpse of their reality. And the main factor that touched my heart, that I know too well is that he says:
"I’m not profitable….I’m not worth saving"
& the shit thing is pharmacy company’s will manly only invest in the creation of drugs if they believe that they can make a reasonable return, like any company. I often wonder if they had a patient in front of them, if they would feel different but at the end of the day they are a company & like any company they want to make a profit.
The more well known a disease is like cancer, there is a much higher rate of drugs coming into the market but the rarer the condition, the less drug choices you have because there are simply not enough people affected to be deemed profitable, its not that it can’t be done.
This is why we need to give opportunities for our universities to research & make affordable treatments for rarer diseases (which many do magnificent research anyway). It shouldn’t be the case that access to a broad spectrum of treatment is based on how common a disease you have.
To help you realise how few new specific treatments are created for one of my conditions, psoriasis arthritis, the older type of medication, disease modifying antirheumatic drugs (DMAs), were mostly created in the 50s to 60s & of these there are five!
Of the newer type of medications used today, biological response modifiers (anti-tnfs), there are also five & these began to be approved from 2002 onwards, so a 33 year gap between medical advances. This is for a condition that affects a much wider range of the population & although the rate of new medications has increased it is still low & this is why the more rarer diseases than my own need proper medical research.
Everybody is worth saving
So if you can donate please remember to donate to your local charities also & make sure that the charity is utilising funds correctly.
MNDA UK Charity: http://www.mndassociation.org/