BH4/Kuvan Commissioning Policy

NHS England is currently considering a policy for the use of BH4 in children with PKU.

BH4 is a chemical “helper” that is essential to increase the activity of the PAH enzyme (PAH is the enzyme that is missing or not working properly in people with PKU).

BH4 has been shown to lower blood phenylalanine concentrations significantly in approximately 20% of patients with PKU, mainly those with mild to moderate PKU.

The consultation below is to show your support for the use of BH4 as part of the treatment for PKU.

If you would like to support the policy:

  1. Click on the following link:
  2. Scroll to bottom, click on “Complete the public consultation here”
  3. Complete “About You”
  4. Subject of response is “Clinical Commissioning Policy”
  5. Select “Sapropterin for Children Clinic Commissioning Policy” (4th from bottom)
  6. To support: Click yes - top and no at bottom - then submit.
  7. When done, distribute among family and friends if you wish to do so.

You can read the full policy by following the link below.