Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, pursuant to the Answer of 13 March 2019 to Question 230073 on Haemophilia, if he will publish the number of patients with (a) mild, (b) moderate and (c) severe (i) haemophilia A and (ii) haemophilia B by (A) the number of bleeds they had in the most recent year for which data is available and (B) age groups (1) 0 to 18 and (2) over 18.

The number of patients with severe haemophilia A and haemophilia B for 2018 by the number of bleeds they had and age groups 0 to 18 and over 18, is attached.

The National Haemophilia Database (NHD) have very limited bleed-level data for patients with mild or moderate haemophilia who do not bleed frequently and do not generally require home therapy. The non-severe patients using Haemtrack are skewed towards the severe end of moderate and anyone with zero bleeds is very unlikely to be reporting. For this reason, the NHD have excluded non-severe patients from these results, as it makes the data unlikely to be robust.

It should be noted that the following limitations apply to this data:

1. The data is derived from patient-reported Haemtrack home therapy diary data.

2. The data is limited to patients who require home-therapy.

3. These results are prone to reporting bias since uncompliant patients and patients treated on-demand, treated only when they bleed, are under-represented in this sample. The data may therefore paint a slightly optimistic picture.

4. About 85-90% of clinically severely affected (less than 2% VIII/IX) patients are managed with regular prophylaxis to prevent bleeding. Prior to prophylaxis, patients treated on-demand bled between twice a week and once a fortnight and, as the figures show, the mean annualised bleed rate has been dramatically reduced to about four per year. However, our aim is for the patients to be bleed free, without which the joints will not be fully protected from bleeding.