Why It’s Time to Re-evaluate Cystic Fibrosis
Cystic fibrosis was rarely encountered by Life and Health underwriters until relatively recently. However, advances in our understanding of this inherited lung disease, and the emergence of more effective treatments, mean that children born with the disease are now surviving into adulthood and living much healthier lives.
It follows that more people with cystic fibrosis (CF) are in employment and require fair access to financial services, including insurance. Specifically, demand for personal and family protection coverage is growing among CF patients. It’s excellent news, of course, but CF still poses a challenge to insurers because this chronic disease has varying symptoms, and treatments take different forms.
Despite the great steps forward, a lower than normal life expectancy remains a reality for people with CF, who endure multiple challenging symptoms produced by sticky mucus building up in the lungs, digestive system and elsewhere. Individuals must maintain diligent therapeutic routines to keep the highest standard of normality in their lives.
Longer-living patients may suffer more lung infections and therefore require even more treatments. Similarly, the increased frequency of these symptoms can make it increasingly difficult to work, bringing additional financial pressures and subsequent stressful impacts.
On the plus side, advances in gene testing allow for personalised medication, and that means more successful treatments are possible. New drugs and combination therapies based on the molecular mechanisms of CF can help some patients with specific mutations. Sadly, at this stage only the minority of CF patients have the gene mutations compatible with such treatments.
Nevertheless, for those whose gene mutations are compatible with one of these medicines, the benefits appear to be significant. It is claimed that lung function improves by around 10% and that sweat chloride levels reduce by around 50%.
Digital technology could be another way forward in assisting patients to self-manage their CF effectively at home. Instead of having to attend time consuming clinical consultations, the CF patient could use an app to promote breathing exercises and to collect actionable data - such as nutritional intake.1
Advances have also been made in gene therapy. Rather than having a random approach using retroviruses as used previously, a newer approach using a lentivirus vector, which more accurately replaces faulty parts of the CFTR gene, and which is delivered to the lungs by a nebulizer, has proved successful. Patients in the study were noted to have a small but significant improvement in their lung function.2
So while this remains a serious disease, we are seeing improvements in mortality and newer and more effective treatments that give greater hope to CF patients. From an insurance perspective, the high levels of associated debility mean Income Protection cover is difficult to offer but terms for Life cover may be possible where the underwriter is satisfied the disease is well-maintained and only slowly progressing. Each case must be assessed on its merits, and we recommend all cases receive Chief Medical Officer involvement to help make an appropriate decision.
A positive mindset, insight into the condition itself and careful adherence to any treatment regimen are all credit points in the assessment. Additionally, a person with CF who is successfully using one of the new generation treatments - one of the CFTR chloride channel drugs, for example - may also be looked at favourably as it is likely lung function is less impaired.
In a world of personalized healthcare and gene therapy, mortality and morbidity for CF patients is likely to keep improving. As our understanding of the relevant gene mutations allows more effective drugs to be developed at reasonable cost, it is possible that individuals with CF will move closer to the normal mortality curve than where they are now.
- Getting to know Sammie (2018). Cystic Fibrosis Trust. https://www.cysticfibrosis.org.uk/what-is-cystic-fibrosis/cystic-fibrosis-care/personalised-healthcare/lets-get-personal/getting-to-know-sammie (accessed 14 September 2018).
- McCracken, L. (2018). Transforming lives through technology: Cystic fibrosis. Digital Medical Communications.