New research, commissioned by healthtech company Mendelian and undertaken by Imperial College Health Partners (ICHP), has, for the first time, shed light on the cost and resource impact the lengthy process of diagnosing rare diseases is having on the NHS. The research, which was collated using the Hospital Episode Statistics (HES)* NHS Digital database of over 60 million patients, found that over the last 10 years, rare disease patients during the diagnosis period have cost NHS England in excess of £3.4 billion. Using an analysis based on a cohort of 258,235 patients diagnosed with a rare disease during a 12 month period (2017/2018), the research focused on hospital visits and activity in the lead-up to diagnosis over the prior 10 years.** An analysis of the data found a higher number of hospital visits and accompanying costs per rare disease patient when compared to the general patient population. Although the rare disease cohort included in this assessment only made up 0.94% of the HES reported hospital population during 2017/2018, over the preceding 10 years, they cost an average of over 2X more per patient compared with other patients who had a hospital visit during that year - requiring more resources on average and more costs per treatment (indicating an average individual difference of over £7,000). Furthermore, in a comparison of 64 inpatient and outpatient procedures, the total cost for the rare disease patient cohort outweighed the costs of the comparative population in the majority of procedures. On a global scale, it is estimated that rare diseases affect 350 to 400 million people and around 1 in 17 people will have a rare disease at some point in their lives. Previous studies have also shown that rare disease diagnosis may take between 5 to 30 years, depending on the disease and healthcare setting and in the UK, it takes an average of 5.6 years, eight clinicians (including four specialists) and three misdiagnoses before the correct rare disease is identified.*** Commissioned by Mendelian, a healthtech company building the world’s largest repository of information to help accelerate the diagnosis of rare diseases, the research builds on this existing knowledge to give a clearer picture of just how costly identifying these types of illnesses can be to healthcare systems.
Julia Wilkins, Head of Data and Analytics at Imperial College Health Partners said: “The costs to the NHS highlighted by the research are in fact only the tip of the iceberg, due to the fact that routine healthcare data does not yet fully capture the true extent of the thousands of different rare disease classifications that can pass through the system. For example, the International Classification of Diseases (ICD-10) is believed to only account for approximately 5% of known rare diseases. Therefore, these recent findings might well be extrapolated in order to anticipate a complete picture of the impact of diagnosing rare diseases on the NHS, both in terms of cost and resource utilisation, which is most likely considerably larger than the estimate outlined.” To read the full report click the image below: * The HES data reports were developed by ICHP in partnership with Harvey Walsh Ltd (ICHP data partners) via a data sharing agreement with NHS Digital (DARS-NIC-05934-M7V9K) ** Please note, the research data as described above is based on hospital activity and visits including all admissions, outpatient appointments, hospital day cases, and A&E attendances at NHS Hospitals in England. It does not include drug treatment costs (as this occurs post diagnosis) or primary care data (GP visits). ***https://globalgenes.org/wp-content/uploads/2013/04/ShireReport-1.pdf About Mendelian Mendelian is a technology company building the world’s largest repository of information to help accelerate the diagnosis of rare diseases. The company is a team of eight based in London, with a wealth of experience across a range of complimentary disciplines including business, machine learning, data science, design and medicine. Currently Mendelian’s free service has been used by clinicians and specialists (geneticists, pediatricians, neurologists, cardiologists) across a range of disciplines in more than 150 countries. About ICHP
Imperial College Health Partners (ICHP) innovates and collaborates for a healthier population. We turn the potential of innovation into reality to help solve pressing challenges by collaborating across the health sector. By connecting a unique network of health experts we can accelerate the adoption and spread of innovation amongst our member organisations. We are a partnership organisation bringing together NHS providers of healthcare services, clinical commissioning groups and leading universities across North West London. We are also the designated Academic Health Science Network (AHSN) for North West London and a member of The AHSN Network. For media enquiries relating to the research please contact Natalie Hudson on Natalie.hudson@imperialcollegehealthpartners.com or 07957 699884.
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UK based charity DEBRA, the only national charity supporting people suffering from EB, is launching a patient driven clinical trial to investigate the therapeutic potential for cannabinoid-based medicine in treating pain and itch in EB. EB is a genetic skin condition which causes the skin to blister and tear at the slightest touch. Blisters need to be drained and dressed every day – a painful procedure that can take several hours and is harrowing for both EB sufferers and carers. In some cases, internal linings and organs are affected, and complications as a result of infection and extensive scarring are common. Some types of EB can be fatal in infancy and others are severely life-limiting. There are over 5,000 people suffering from EB in the UK and half a million worldwide. The trial is taking place at the Center for Blistering Diseases, University Medical Center Groningen, in the Netherlands, and is being run by Investigator Nicholas Schräder and Professor Marcel Jonkman. It’s a three-year study involving 15 participants being treated with cannabinoid-based medicine (CBM) and is only open to people 18 years old and over living with EB in the Netherlands. The CBM medicine being used in the study contains naturally derived compounds, phytocannabinoids, from the cannabis plant. The trial aims to gain an insight into whether CBM medicine could ultimately improve the quality of life of people with EB. The current treatment for the relief of pain and itch caused by EB, is the prolonged used of opiates and anti-inflammatories, which are known to lead to unwanted and unnecessary side effects. On the trial the plant-based cannabinoid will be extracted from the cannabis plants and incorporated into an oil and administered as droplets under the tongue of the participants. While on the trial participants will report monthly on pain, itch and changes in their quality of life.  We are extremely pleased to fund this clinical trial, particularly in light of the government’s decision to legalise some forms of medical cannabis Caroline Collins, Director of Research at DEBRA Caroline Collins, Director of Research at DEBRA, said: “We are extremely pleased to fund this clinical trial, particularly in light of the government’s decision to legalise some forms of medical cannabis. This trial is designed to improve the quality of life for people suffering from EB by alleviating two of the most debilitating symptoms of the condition, pain and itch. Anecdotal reports from people suffering from EB suggest that cannabinoid-based medicines (CBMs) are effective for pain and itch symptom control. The clinical trial will start to gather the scientific evidence needed to prove that CBMs are an effective treatment for pain and itch caused by EB and will begin the work towards a new treatment protocol and evidence-based guidelines for the management of these debilitating symptoms, which we hope will improve the quality of life for many.” DEBRA is the only national charity supporting people suffering from EB in the UK. The charity provides a wide range of care and support for individuals and families living with EB. It also funds pioneering research to find effective treatments and ultimately a cure for EB. DEBRA was founded in 1978 by Phyllis Hilton whose daughter Debra had EB – the charity was the world’s first EB patient support group. The charity is celebrating its 40th anniversary on Tuesday, 27 November and as part of the celebrations is announcing the appointment of Falklands war hero and war veteran Simon Weston CBE as its new president.
Simon Weston, CBE and President of DEBRA, said: “I am delighted to become the new President of DEBRA and I am looking forward to supporting the sufferers of this terrible skin condition. People with Epidermolysis Bullosa (EB) face constant, debilitating symptoms. I understand something of the pain and suffering that people with EB endure every day. Having suffered 46% burns on my body when injured during the Falkland War in 1982, I had to overcome not only my injuries but undergo 98 operations. For many years I was taking opiates to deal with the pain from both injuries and surgery. I experienced the side effects and the negative impact of long-term use of opiates on my body. An alternative method of pain control will be a welcome relief.” To find out more about DEBRA and the clinical trial visit: www.debra.org.uk/cannabinoids
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