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 place copies in the library of National Haemophilia Database data on the average number of bleeds people with (a) mild, (b) moderate and (c) severe (i) Haemophilia A and (ii) Haemophilia B had in the latest year for which data is available.

Data on the average number of bleeds for people with severe haemophilia A and haemophilia B is shown in the following table.

The National Haemophilia Database have very limited bleed-level data for patients with mild or moderate haemophilia, as these patients do not bleed frequently and therefore 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, they have excluded non-severe patients from these results, as they would make 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.