Not cheap – having an allergy…

One of the constant, and justifiable, moans of those with food allergies/intolerances (and the justification for keeping gluten-free staple foods on prescription) is that ‘freefrom’ foods cost so much more than ‘normal’ foods.

There are many genuinely good reasons why this should be so (more expensive specialist ingredients, many imported from far afield, more difficult/time consuming to manufacture, extra cost of testing for allergens, no economies of scale) although I suspect that it is not unheard of for manufacturers to ‘load’ the cost the cost of ‘niche’ freefrom products to generate themselves a little extra profit. But, hopefully, as ‘freefrom’ food becomes more mainstream, so will its prices.

But for those with a food allergy/intolerance, it is not only the food that they eat that may cost them extra. A couple of weeks ago we ran an article (an update on one first published in 2005) on avoiding allergens, especially gluten/starches, lactose/dairy and sugar in prescription drugs.

You can read the full article here but the nub of it is that, if you cannot tolerate any of the excipients (the non-active fillers, capsules etc) in the standard formulation of your prescription drug, and you cannot buy an off-the-shelf version without these excipients, the drug can be made up for you, without any of your particular allergens, by what is known as a ‘specials’ laboratory . However, this can only be done at the request of a doctor or dentist and – not surprisingly – it is very expensive. So, especially in these straightened times, doctors are very reluctant to go down this route.

The subject came to my attention again because, long time friend of FoodsMatter, Jacquie Broadway, who is severely allergic to all starch, but especially to corn, to sugar and to moulds and has serious digestive and malabsorption problems, has just had a hip replacement and is suffering from a crumbling spine. She has been battling for years with her GP practice to get antibiotics that she can tolerate but now she also needs pain killers. The full story is at the bottom of the article but what it boils down to is that although her GP did prescribe one lot of paracetamol crystals that she could tolerate (cost £300), they are not prepared to fund any on-going prescription. So either she puts up with the pain – or she pays privately.

(One other option that Micki Rose suggested in a blog back in 2010, was getting your drug as a suppository, a delivery method much favoured by the French. Suppositories, if you can get them, usually contain nothing except the drug and the melted fats – usually palm or coconut oil – to make the capsule.)

The question of how much the NHS should spend on drugs (or in this case, allegen-free drugs) for any individual patient is, of course, a hugely difficult one. No purse is bottomless and although it would be wonderful to be able to fund every beneficial treatment for every patient, in the current state of the country’s finances that it simply not possible. So hard ‘value judgements’ have to be made which are always going to seem unfair to someone – in this case, to the allergy sufferer, again…

If allergy/intolerance sufferers got great service from the NHS and wonderful treatment from specialist units around the country, then having to do without expensive prescriptions for allergen-free drugs might not seem quite so unfair – but they don’t. Despite marginally increased awareness in some GP practices, and some (very few) centres of genuine excellence around the country, allergy/intolerance sufferers are still  very poorly served and look as though they will remain that way.

How frustrating, then – on a slightly different tack – that no PCTs picked upon the excellent and extraordinarily cost-effective allergy/intolerance nurse training programme  piloted by FAIR that has just been featured on FoodsMatter.