The Rare Diseases Policy Wild West

Hey, Everyone. It’s been a while since I wrote anything on this blog. I’ve had very little time (or the motivation) to begin a new writing project, but I’ve had a few ideas, and who knows what they might lead to? I’ve been busy with renovations in and around my house, and I also accepted a nomination as a trustee for the body corporate where I live. It’s a thankless job for a career volunteer like me. You’re public enemy number one from the word go, and you get no remuneration except maybe some peace of mind about your investment. You have to deal with difficult owners who don’t understand what they bought, or they just don’t want to comply with the applicable rules and regulations. Luckily, most of the day-to-day decisions are made on your cell phone these days. Of course, I had to study the three pieces of legislation governing sectional title housing, attend webinars online and Youtube, and now I’m at a level where I can comfortably say I’m fairly knowledgeable. Also on the volunteer front, I’ve done a few interviews for the MDFSA again, and I will continue to do so as long as possible. Now and then, I provide assistance in respect of legal research for the MDFSA’s PR campaigns. Mostly I just connect ideas, people, legislation and articles in the background. The way I like it. Batman without the billions and the costume. It’s like the Wild West in South Africa if you have a rare disease (and you’re permanently disabled). A balancing act where you’re trying to explain to society that even if you have many skills, and you’re still able do a variety of things, you just can’t take part in the way you used to. I was at a certain level of employment, and I don’t trust the system to look after me if I go back into the fight. More like a prison if you ask me. Medical aids will treat you as though you don’t need the required physical therapy and expensive assistive devices to keep you alive and kicking anyway. For example, I just bought an adjustable bed for an inordinate amount of money on hire purchase just to be able to get on and of without assistance, just so I can fucking sleep. The medical aid will ghost you if you claim something like this, and the insurance company paying your income protection will do everything within their legal right to review your claim as often as they can over the years to try and convince you to go back to work. Obviously, so they can save money for their shareholders. Even after you’ve submitted reports for the past nine years from different specialists and the insurance company itself appointed an occupational therapist who agreed with the specialists, they still try their luck. Well, from 2014 I’m doing it my way. I’m the one who has to live with this disease, and they can all kiss my cripple ass. The rare diseases community are coming out of the shadows and we’ll do everything in our power to change your thoughtless ways. Change your unfair policies or we’ll change it for you! Eventually. 

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