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[Terbs]

In line with the other thread on this Ice Bucket stuff, but digressing slightly....

It raises my hackles seeing all this raising money for research into something that ends up with N.I.C.E or NHS Trusts saying they cannot afford to dish out the drugs. What is the point of all this development when it won't be used.
I am not having a dig at raising monies, but at the end of it, people are given hope that just disintegrates over cost.
In a nutshell, why spend millions developing something which barely anyone can access, unless by some lucky stroke, you bypass that other disgraceful thing, the postcode lottery!!!!!! 

Rant over

[The Sheriff]

In line with the other thread on this Ice Bucket stuff, but digressing slightly....

It raises my hackles seeing all this raising money for research into something that ends up with N.I.C.E or NHS Trusts saying they cannot afford to dish out the drugs. What is the point of all this development when it won't be used.
I am not having a dig at raising monies, but at the end of it, people are given hope that just disintegrates over cost.
In a nutshell, why spend millions developing something which barely anyone can access, unless by some lucky stroke, you bypass that other disgraceful thing, the postcode lottery!!!!!! 

Rant over

Bad choice of words.

[Terbs]

Trust you to pick that up

Obviously no pun or disrespect was intended

[D]

In line with the other thread on this Ice Bucket stuff, but digressing slightly....

It raises my hackles seeing all this raising money for research into something that ends up with N.I.C.E or NHS Trusts saying they cannot afford to dish out the drugs. What is the point of all this development when it won't be used.
I am not having a dig at raising monies, but at the end of it, people are given hope that just disintegrates over cost.
In a nutshell, why spend millions developing something which barely anyone can access, unless by some lucky stroke, you bypass that other disgraceful thing, the postcode lottery!!!!!! 

Rant over

You are confusing a few different but separate processes.

Charitable research money is usually distributed by the associated trust (ie. British heart foundation, British lung foundation) to independent researchers based on merit or following a shortlist and an interview selection process. The outcome of such research is not patented or protected and is available to all. Most times this research is not a new drug, but perhaps using an existing drug in a different application or identifying a cause for lung disease or heart disease etc. for eg: the BLF highlight the following few as their research successes:

identified one of the genes involved in lung cancer;
pioneered the use of a test to diagnose and monitor lung disease in young children;
proved that vitamin C is crucial for healthy lungs;
identified which components of air pollution are the most hazardous to our lungs;
pioneered effective home treatment for children with pneumonia;
proved that viruses like the common cold are the main trigger for exacerbations (flare ups) of chronic obstructive pulmonary disease (COPD);
pioneered the use of pulmonary rehabilitation treatment for COPD

Private pharma companies on the other hand spend their own money on private research (which can sometimes include NHS trusts), but obviously price the end product to recoup their expenditure. The typical cost of developing a new drug is around £2 billion. Hence the cost associated with new drugs.

I don't think any UK charity would have that sort of resource/funds/manpower to fund research into a new drug.

Lastly NICE get no money from charitable research. Their role is to rationalize the use of a new drug (ie developed and priced by private pharma companies) based on value, safety and effectiveness.

[Rods2]

One of the most expensive parts or often by far the most expensive part of a drugs development is clinical trials. This can cost up to $100m. This is about testing a drugs effectiveness by using control groups, and also the careful monitoring of side effects.

Up to 97% depending upon the category of drug and the illness it is targeted at will fail on trial costs or effectiveness. If may not work at all when tested on humans, it may not be as good as current treatments, it may only be marginally better and not worth the cost of further trials, it may produce unacceptable side effects or the drug company may not be able to get the funds to progress from initial trails to complete full trials. The latter is very common as many of the leading biotechnology companies are start ups, who are reliant on being able to raise money from external funding sources.

The current trials system is first and foremost about safety and there is beginning to be a debate on whether it is too risk adverse meaning that many promising drugs don't get beyond the initial development stage where the market size and therefore the cost of treatment is too high, mainly due to the cost of the clinical trials. A good example of this is Ebola treatment, there are successful drugs to treat this, that are now having uncertified field trials due to the very high death rates. Normally this would not be considered, but with up to 90% death rate, the decision has been made, there is not much to lose and much to potentially gain from using these uncertified drugs. Drug companies are getting round these high trial costs to a degree by carry out trials in cheaper 2nd/3rd world countries.

Any reform of the current trials system, so more beneficial drugs come to market and also at cheaper prices, will have to be at the 'nth' cost of safety, which is a political question? Is the current system too risk adverse? Would the benefits of more drugs coming to market outweigh the greater risks of less thorough cheaper trials? Are we prepared to take more risks on patient safety? You, the politicians and society at large needs to decide?

The development of better pre-drug-trial testing systems like human body simulators are a promising area of development to reduce the risks to patents in the trials and maybe reduce the trials cost.

How do I know all of this, because this information is available on the Internet? A good starting point and a very good source of many latest technological and drug developments is the free Patrick Cox technology newsletter by Mauldin Economics, a US based investment company, but if you subscribe, take note of the strict unauthorized disclosure terms, but there are also many other sources of information. Google is a wonderful research tool and saves much time when you are researching something and need answers.

We are beginning to see the benefits of the biotechnological revolution and many other new technologies. The pace of change is getting faster and faster in an increment rather than revolutionary way that inventions like the motor car and electronics did in the 20th century. A good example are LED bulbs, where light to power efficiency is revolutionary compared to the old Edison / florescent bulbs, but we don't think of them like that as we have been used to having electric lights for over 100 years.