Yeah, thats what makes me sick. That so, SO many people could get what I get, and are disallowed it. Even cancer patients.
Its just fucking wrong. It nearly/could easily have killed one of the people I care for most, or left her a vegetable, a girl with Rett's, who has, unusually, since she is a cellular chimaera, a sparky, and quite astonishing intellect. It rivals or perhaps even outmatches mine own. (I am not one to blow my own trumpet, but I AM a polymath, with the exception of being, ironically, mathematically/numerically as capable as a moldy banana) And someone I am both truly glad to even get permission to speak her name, let alone know her, (obviously this person is a she, since only females with Rett's can survive more than a couple of hours , if that, past birth. Usually they do not live that long and die in-utero. Unless they are the very, very rare individual who is of an XXY karyotype, since Rett's is X-linked, and men only have one X chromosome, females have, usually, two (although XXX, XXXX and even XXXXX is known), so they have a protection which enables survival, albeit usually at extreme cost, of severe mental retardation and no motor skills.
This girl...she really bucks the trend alright. She's a mutant, literally. A rare, rare one, and a special one. Autie, very beautiful, and with an intellect such as I can converse with her on an equal level, we can understand each other without explanations having to be given by default unless asked for, and as far as mobility goes, she is physically extremely fit, she is a dancer, and a gym coach to special ed kids. Those pharma bastards, after her boss (former boss), not due to cutbacks, but just because he was a fucking cocksucker who if I ever meet, will die a slow, and excruciating death, after I skin him alive, cover him in quicklime, caustic soda and salt and after ramming a stake up his ass, roast him slowly on a spit, moving the burning coals from feet first to his head, slowly, so he doesn't get to die of CO poisoning first. And then crucify him and leave him to die, with his eyes ripped out and the holes packed with red hot caustic soda.
And yeah I know what some dealers are like. Fucking cheapskates who sell 'weight' which is nothing like, and that cut to fuck (like heroin which is only 20% H and the rest cut. Not counting a little caffeine added to base H to allow it to be smoked, but just stomped on to make more profit by dilution. Personally, I'd just charge more for proper product, if I were to deal. I'd warn the user 'don't believe my words, but before you TAKE the product, act as if they were true, once you have bought my item/s from me and go to use them, treat them as uncut first, so you do not overdose. Once you've tried it, you'll then know what I spoke was truth'
As for drugs developed for very rare conditions, they are called 'orphan drugs', and granted status as such, since they are usually if not always the only cure or treatment for the condition.
Don't like street dealers much at all. There ARE some honorable ones, like a guy who warned me the dope we went to score was cut with fent or something similar. He was a hobo, homeless guy, and at first obviously I wasn't going to trust him with my money, and he DEMANDED I keep hold of his up-to-date iphone and property until he returned with the dope. He took some, but took what I said he could have, for being my go-through. He could have dipped in, but he didn't. Went off with my money, and came back with the fent-laced H. Always scrupulously honest with me, absolutley so. Even warned me off dodgy fuckers he knew. But this guy, he treated me protectively in fact, and always made sure we went to the best dealers. When I would use street products other than weed that is.
I don't, now, since I don't want the risk of cut shit, or toxic stuff. I decided that I MUST know the provenance of any recreational substance bar weed, from its being a few chemicals until its emergence, birth and then purification to meet my (admittedly pretty damn demanding)
The private big pharma....they can rape themselves alright. They NEED to get fucked in the arse alright. Although I'd sooner do it with a broom handle with nails hammered into it and broken glass glued on.
Also, if its a half mil per patient per year (assuming it isn't a one-shot cure) or a million, but the rate of the disease is one in a hundred million, then the actual financial cost ends up quite small since the NHS need have only a small quantity, sufficient for a few patients.
As for the NHS just being greedy...boy would I like to get out my nunchaku and go pay those greedy svinya a little house call from witch-doctor Lestat (lets just say I moonlight haha). Although I'd not be coming to TREAT broken bones. I'd be delivering them. Like presents from a schizophrenic santa-claus. Withholding quality-of-life and cancer drugs from patients just to save MONEY..that is major-league fucked the hell up. There are some that they MUST keep available for all patients who need them. The ones judged as the basic components of a basic functioning healthcare system, from here to the third, fourth and fifth-world shitholes where they are brought by the red cross. But they are really basic. To save mere currency for their budget, the NHS has no excuse.
As for the dealers and their extortionate prices...shit..that all could be eradicated completely overnight, by fully legalizing each and every substance. The dealers would lose their incentive, if such items as MDMA, weed etc. could be bought from a pharmacy, in little packets with instructions on safe use, of verified purity. The govt could make a lot of tax income, and use it for the medical treatment of those with such conditions as treatment is now denied for. And as for those who become addicted, they could buy what they need from a pharmacy rather than having to try, possibly unsuccessfully, to score on the street. Goods would be pure, and guaranteed dose units, made by pharmaceutical companies and freelancers who could pass a license test on their skillset and dedication. And of course, for things that people want to use themselves but not sell, they could be free to do so without judgement or penalty. Criminal cartels with murderous intentions without morals, their businesses would simply evaporate like a dog fart in a hurricane. And those addicted, they could buy at the pharmacy at fair prices, proper product, uncontaminated, and thus remain functional in society, and when they were ready, slowly taper, with legally bought product, until they were free of any addiction they incurred, despite the warnings on packets of compounds which would do so.
Although I'd also legalize the making of things for people themselves for whom it is a calling, the Hive Bees, for whom it is not a job, but a hobby they enjoy. And who like being creative, inventing new things, again they could market after the licensing procedure. And of course, let the weed-growers who take great pride in their accomplishments, who take great pains to produce the very finest strains and hybrids of their own. Kind that in places like amsterdam would be taking up entries in the cannabis cup, to win prizes for it here too.
But legalization like of which I speak, all those criminal syndicates would vanish overnight, having no further profit margin to make. Overcharging for inferior product that might be dirty shit, nobody would go to any but the Hive Bees, and the weed-specialist growers who take growing bud, or take 'cooking' to being a clandestine chef, as an art form.
It would solve SO many problems, near instantly, as fast as it took for pharmacies to get in stock and the companies to make the products. Which of course, pharma companies could do, hell, if I can make good MDA/MDMA then so can they. And I never had anybody to teach me, never had a mentor, I am self-taught. If someone with that background can train themselves to do it, big pharma with their great sophistication of their labs...they could make great stuff, and make sure every single MDMA pill was accurate to the microgram and as advertised.
Cartels, street trash, ripoff artists? gone. Gone as soon as the first reactors could produce the first batches. And even compete with me in quality. Quick as that could physically happen and distribution to pharmacies performed, away the mafia types would go. Like with alcohol prohibition, when repealed, the speakeasies either died a death, or became tourist attractions, legalized and free to continue, if they had it as an art form rather than simply providing getting pissed to drunkards.
The money, going to treat sick people, the destitute, the poorest in need. That tax, the budget for the NHS could be increased for all treatments, especially those otherwise denied many in desperate need most of all, the kids in agony, need I say more?
When they come out with 'just say NO!' propaganda...it ought be 'just say KNOW' And the 'won't somebody puuhh-leez think of the CHILDREN!!!, those same children could be thought of, properly, and they could be granted the things, the love, the care, the foster families they so direly need in life. So as not to just exist on a knife edge. Not to exist, but to LIVE. There is a difference between continuing to consume nutriment, and excreting it once what can be taken from it is processed and taken out of it, sleeping, waking, and doing the same again, all day, every day, if they GET to eat every day...that is what I call 'thinking of the children'. Not just a buzz-phrase. But putting act to word, practicing what they preach. Yes, please think of the children. Sure. But when people do, thinking isn't enough. One must also DO.
Nobody would sell their kids shoes or make them go without food and clothing for drugs, for they could be bought cheaply, of extreme purity, batches tested etc., at the pharmacy. For fair prices. It just wouldn't happen.
Such reform not only should happen. It MUST happen. It HAS to happen. And eventually it will do. But it won't happen fast enough. And all those drug 'offenders' who's 'offense' consisted solely of taking, possessing, selling, giving away, making etc. such substances, and jailed, would have to be freed, and compensated for the time stolen from their lives, and the hurt done to their families due to them being jailed. No longer fathers or mothers taken from kids. No longer kids deprived of loved siblings, no longer loved ones taken from their lovers. Released, and compensated, so long as they did no violence in their pharmacological enterprises.
