Hidden Costs of Rare Diseases - new report

Regular readers may remember me attending a drug re-purposing conference back in Feb this year

(reported here: http://hspjourney.blogspot.co.uk/2016/04/my-views-on-drug-repurposing-conference.html)

The item that caught my attention was the presentation about the hidden costs of rare diseases. I spotted the other day that Genetic Alliance have published a report on this very topic. The report is here: https://www.geneticalliance.org.uk/media/2502/hidden-costs-full-report_21916-v2-1.pdf, linked from here https://www.geneticalliance.org.uk/news-events/news/hidden-costs-report/.

The report has some main findings:

• Receiving coordinated care is important for rare disease patients, yet remains a challenge,
• The full costs and benefits associated with different models of care for rare disease patients are unknown 
• Patients and families face significant (‘hidden’) costs (both financial and psychosocial) associated with the way that their care is managed
• There are significant limitations associated with existing data sets for rare diseases 

Whilst this is reported as being a feasibility study, within the report they have talked to various patients and carers, and there are some good observations on the difficulties which patients find, and they set out proposals for further research. They do identify and summarise these costs associated with rare diseases, which are very similar to those I heard in Feburary:

Financial:
Costs associated with appointments: Time off work and reduced income; childcare; travel including petrol, public transport and taxis; parking; food and refreshments; accommodation; sundries; accessible vehicles and transport options.

Other financial costs associated with wider condition management: Private healthcare; childcare and respite; specialist activities and equipment; IT, internet and telephone costs (including paper and printing cost); prescriptions; fees for informal helpers and carers; disruption to employment and income.

Other:
Time: Time off work; time spent coordinating (‘project managing’) care and the various agencies and appointments involved; time spent fighting to access care and support.

Psychosocial, health and well-being: Disruption to schooling, employment and personal time; impact on relationships and social life; isolation; impact on identity and sense of self; living with uncertainty; mental health; fatigue; confidence and self esteem; anxiety and stress associated with appointments. 

Wider family: Costs identified above related to patients, parents and grandparents; siblings and wider support networks.