Wednesday, 20 May 2015

Super bugs are taking over the world.

Or, to put in a slightly less hysteric manner, multi-drug-resistant organisms are spreading — like klebsiella (a bug Isaac was chronically infected with when he was younger for some years) or MRSA, the multi resistant form of staphylococcus aureus, which commonly affects CF lungsEven infections that used to be easy peasy to treat, like gonorrhoea, are becoming incurable. Tuberculosis alone kills 1.4 million people a year. One reason for this crazily high number is that most people in the world are too poor to pay for medicines, but another is that strains have become resistant to the array of drugs we have. Even after two years of toxic treatment, drug-resistant tuberculosis has a fatality rate of about 50 percent...

Add to this the ease of access, in some parts of the world, to buy antibiotics over the counter – which people are over using, and not finishing courses, which only helps breed super bugs. I saw an experiment once where they spread bacteria on an agar type table, and added the correct amount of antibiotic, which killed the bacteria. Take the same table and add a little antibiotic, but not quite enough, and the bacteria not only overcame the antibiotic, but it mutated and got all the way over the table and had a massive super bug-party

Asking your doctor for antibiotics when you don’t really need them is adding to this problem. As is not quite finishing the course she gives you when you do need them…

Old antibiotics are being phased out at twice the rate that new ones are being developed. We are losing the most important kind of medicine ever discovered, and why?

Duh duh dah… MONEY SCHMONEY! Historically, the drug industry loved antibiotics. But if an antibiotic is useful against only one type of bug then relatively few people need it during its patents life (patents run for 10 years from invention, I think?). And if an antibiotic is “broad spectrum,” meaning it works on many different types of bacteria, wider use shortens its life because resistances develop fasterAlso antibiotics are designed to cure an acute disease, so only used for short periods. So not a great money spinner compared with drugs that are used for years and years to treat widespread conditions like asthma. 

But CF is one exception…. People with CF are on daily antibiotics, usually numerous ones (oral, nebs and IV’s). It’s the single biggest thing in our extensive arsenal to keep Isaac well. 

The other problem is how blimin CLEVER bacteria are. Alone they are pretty feeble bunch, but collectively they gain intelligenceThey learn together how to survive antibiotics. And the more they work out how to survive, the harder it is to find drugs that can beat them.

So how do we get drug makers to want to try? Addressing these two problems might be a start… 

Monopoly protects the ability to set price for profit. Patents allow monopoly – can they not allow longer patents for new antibiotics for a start? 

Like bacteria, who share what they learn and get smart, could drug makers operate in the same way: academic and government scientists and other drug companies working together to share what they learn… collaborate and innovate? I know this is happening in a small way already, thanks to philanthropists, which shows that even competing research teams can share knowledge, risk and avoid costly redundant efforts. 

Or maybe rewarding drug makers for products in proportion to their IMPACT? The lower the cost of a lifesaving antibiotic, the greater the number of people who could use it; the more lives protected, then, the greater the reward. If common infections start to kill again, due to super bugs, then surely the impact of a new antibiotic would be huge? This is already happening people! 

If we don’t create new antibiotics, the super bugs will win. They were around before us, and they will be around after us. Little shits. 

 

Sunday, 10 May 2015

Old neb, new neb, family love.

Found Isaac's first ever nebuliser. Look at the size of it.... He is pretending here, he can't even remember doing this now. His is now handheld, silent, and quick(er). This was like a washing-machine-volumed-steam-machine. We had Thomas the Tank Engine on loop, full volume to get him to sit there long enough at 18 months old. Don't miss those days, but funny looking back now. 

And some pictures below of the kids with their cousins, Ben and Ellie, who mean the world to us also. They are all super close. And some Obie love and Rosa dressing up. Got to include those! 

Happy weekend all. 






Friday, 8 May 2015

I hate mostly.

The week started with another sadness. Another life lost to CF. I am so so very sad for him, and his family. Feels so frickin unfair. 


Isaac's tests from his Immunology clinic came back as 'mostly reassuring'. I hate mostly. Why can't we have completely. Or absolutely. Or incredibly? 

Crucially some of the vaccines he has had in the past have not worked sufficiently, so he'll be having a few more jabs this week. I'm so glad that I pushed for the referral to the specialist.... He has CF, but little immunity to pneumonia.... ? Worrying. They are also going to keep an eye on him long term. There is a chance this immune deficiency of sorts will remain subtle. There is also a chance it may not. None of this is linked to his CF, just shitty luck I suppose. 

On the sunny side, he is well. We are all well. We have lots to look forward to. We are the lucky ones. We have new parquet floor, the garden is starting to look lovely and Obie has stopped toileting in the house. And shhhh, I am making secret plans for Dan's 40th.... (Not sure he reads this anyway!). 

Have a great weekend.