The AKU Society has just finished a study to calculate the average cost of an AKU patient to the National Health Service. Their Chairman, Dr Nicolas Sireau, has kindly agreed to share this with us and our blog readers.
The study was carried out pro bono by Michael Craig, one of the AKU Society’s volunteers, and a senior analyst at KPMG. As you’ll see from the downloadable presentation, it’s an excellent study that provides us with useful data to argue in favor of better coordinated care for AKU patients and access to specialized treatments.
The conclusion is that the overall costs of AKU patients are tiny when compared to the total budget of the NHS. However, costs per individual AKU patient can be high (up to £100,000 per patient per year in some cases) and could be reduced with consistent access to proper treatment at the right time, which would lead to significant improvements in their health and wellbeing. Similar conclusions would likely be found elsewhere in the rare disease sector if similar studies were done for other individual rare diseases.
Dr Sireau spoke at the 2011 World Orphan Drug Congress USA in Washington, D.C. this past April.