So, if malaria’s a disease of poverty – then the disease of wealth is… cystic fibrosis. (Well, diabetes – before the 20th century. Or maybe asthma – apparently its an urban disease exacerbated by overly sterile environments. Or, the classic example, gout. Or cancer or old age or…)
But, to stick to the point and follow the logic through, cystic fibrosis is a genetic degenerative disorder most commonly found in Caucasians. In fact, its the most common genetic disease that hits white people.
Before the 60s, CF was a death sentence for infants. Iit wasn’t until twenty years ago that life expectancy began to reach into the adolescence. Today, sufferers can survive into middle age. It’s one of those success story diseases, the type that’s makes television specials and long magazine articles about determined mothers who just wouldn’t give up – started foundations and made the medical community get focused.
The earlier the diagnosis, the better the prognosis. Most cases present in infancy – although a few rare cases have made it to adulthood before showing symptoms. The US, the UK, and the EU screen newborns. There are over about 70,000 afflicted worldwide with 30,000 in the US and 8500 affected in the UK; 50% of them under 15 yrs. 1 in 25 people of Europeans descent are carriers (and in Ireland, which has the highest rate of CF, 1 in 19). 70% carry one mutational with 30 mutations for the NHS recommends genetic screening before conception – but there are over 1600 mutations that can affect the body’s salt and water transport, resulting in the multi-system breakdown that requires a team of specialists to treat. CF breaks down the entire body, and it isn’t pretty.
The quality of care is the biggest factor in survival – sounds like a truism, but the better the care, the better the odds, and its visible – survival rates between countries, between regions, even between hospitals and physicians. It’s not fair.
It’s not even close to fair. But how much money should be thrown at the problem, trying to make it fair? Let’s even assume that there is money to spend on it – research for advancements (everyone wants to be the exception, wants their children to get to be in time for the discovery of the cure) – or making sure that everyone has access to the treatments?
Can we separate the medicine, the science, from the sociological and the political? Or is there a sliding scale of quality of care vs equality that we’re willing to accept?
It’s a bit of non-question in the US – we’d need a national health care system before we can even start to talk about its priorities, and we’d need to get over our Puritanical/capitalist “effort determines worthiness, work determines wealth, therefore wealth reveals worthiness” mindset to talk about equality of care – but, in the UK, its a real issue for the NHS.
Currently, the NHS gives out drugs by “postcode lottery”. If patients need transplants – actually, when – the waiting list is long and the allocation system unclear: most receive direct donations as lung transplants (the first needed) can generally add only a year or two to their lives. Vitamins and supplements, immunisations and flu jabs, insulin (when patients develop diabetes), biophosphates (for osteoporosis), and constant antibiotics. The respiratory system is the first at risk – by the time patients develop renal failure and digestive issues, nearly all system tend to be involved. Patients need antibiotics throughout their life. Overuse of antibiotics is a problem for the developed/medicated western world – but no more so strongly as with CF patients. The sheer number required to stave off infections are breeding not only breeding stronger bacteria, but the patients themselves become immune or allergic.
As more patients survive into adulthood, the health care system is further patients in need of constant treatment.
On some level – although its greatly complicated by the number of different mutations and how they interact – it can be argued that there is far less excuse for the well-off (who can afford genetic screening, and could have prevented a child from being born with CF) than the poor. One could argue that there is no excuse for families with multiple CF children.
- Bush, A., (2009) Treatment of cystic fibrosis: time for a new paradigm? Chest, 136(5), pp.1197-9.
- McCormick, J. et al., (2010) Comparative demographics of the European cystic fibrosis population: a cross-sectional database analysis. The Lancet, 375(9719), pp.1007-1013.
- Williams, R. & Barker, H., (2010) Cystic fibrosis. InnovAiT, 3(12), pp.743-752.