Key Findings from UCLH Study (2014/15–2018/19)
]• Total IFRs Submitted: 230
• To NHS England: 112
• To Clinical Commissioning Groups (CCGs): 118
]• Decline Rates:
• NHS England: 71%
• CCGs: 34%
• Primary Reason for Decline: Lack of exceptionality (93% of declined cases between 2016–2018)
• Alternative Funding: Half of the patients with declined IFRs received treatment through other means, primarily internal hospital budgets via a local high-cost drug panel.
cms.nhsbsa.nhs.uk+10BPS Publications+10PubMed+10NHS England+5PubMed+5BPS Publications+5
Estimating Monthly IFR Submissions
Based on the UCLH data:BPS Publications
• Average IFRs per Year: 230 IFRs over 5 years equates to 46 per year
(out of 46, only ~ 28 made it through, split between how many drug/treatment options)
National Perspective
Nationally, the number of IFRs increased by 47% over two years, from 50,200 in 2014 to 73,000 in 2016. However, this figure encompasses all types of IFRs and is not specific to solid tumor drugs .BPS Publications
Conclusion
While specific national data on IFRs for high-cost solid tumor drugs is not readily available, the UCLH study provides a glimpse into the frequency and challenges associated with such requests. The high decline rates and reliance on alternative funding mechanisms highlight the complexities patients and clinicians face in accessing non-routinely commissioned treatments.BPS Publications+1PubMed+
My guess is that if they dont change IFR to fully funded GBM, we are screwed. With these numbers, NWBO might get 1-4 patient per year paid for by IFR/Alternative funding. If you add people "self funding", (the number for people paying 200k for a treatment out of pocket is even lower), they might get 6 patient per year.
Why not "fully funded for all solid tumour" one might ask. Well UK (or any other country) just dont have the budget for it, at 200k-250k a piece.
Even for GBM, it would be a hard sell for them to spend that amount of money for so few patient, but at least there is hope it might happen. (small chance, but better than IFR for all solid tumor)
Lets hope for the best!
OUCH, This one is quite scary, look at this chatgpt question/answer ->
ChatGPT
You said:
Statistic on number of IFR submitted in UK, for payment by NHS/NICE yearly.
Define what price/cost would a treatment/drug be considered in the high cost drug?
ChatGPT said:
Between 2014 and 2016, the number of Individual Funding Requests (IFRs) submitted in England increased by 47%, from approximately 50,200 in 2014 to around 73,000 in 2016. A study at University College London Hospitals (UCLH) reported 230 IFRs submitted between 2014/15 and 2018/19, with a 71% decline rate for NHS England and 34% for Clinical Commissioning Groups (CCGs).
BPS Publications
PubMed
+1
BPS Publications
+1
High-cost drugs are defined by the NHS as expensive prescribed items that represent a disproportionate cost relative to the total cost of the relevant episode. Criteria for inclusion on the high-cost drug list include:
archive.datadictionary.nhs.uk
GOV.UK
+1
GOV.UK
+1
The drug and its associated care costs are disproportionately high compared to other expected costs within the Healthcare Resource Group (HRG).
archive.datadictionary.nhs.uk
+2
GOV.UK
+2
GOV.UK
+2
An expected annual spend of more than £1.5 million or over 600 cases in England.
GOV.UK
+1
GOV.UK
+1
The National Institute for Health and Care Excellence (NICE) assesses the cost-effectiveness of treatments using the incremental cost-effectiveness ratio (ICER), measured in cost per quality-adjusted life year (QALY). Generally, treatments with an ICER below £20,000 per QALY are likely to be approved. For ICERs between £20,000 and £30,000 per QALY, additional factors are considered. Treatments exceeding £30,000 per QALY require strong justification for approval.
The Guardian
The King's Fund
+1
The Guardian
+1
For very rare diseases, NICE may consider higher thresholds, ranging from £100,000 to £300,000 per QALY, acknowledging the unique challenges in developing treatments for these conditions.
The King's Fund
Additionally, any drug expected to cost the NHS £20 million or more annually in its first three years triggers a commercial negotiation to manage budget impact.
The Pharmaceutical Journal
In summary, a treatment or drug is considered high-cost if it significantly exceeds standard cost thresholds, either in terms of per-patient expense or overall budget impact.
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