The Minister for Health has recently responded to our petition and correspondence regarding changes to the pre-conditions for prescribing amino-acid formulae in infancy. While the Minister has not agreed to require the Pharmaceutical Benefits Advisory Committee (who administer the Pharmaceutical Benefits Scheme or PBS) to review its decision, the PBAC have chosen (we think wisely) to review it anyway in the very near future (December 2012). We would encourage all affected and interested to email PBAC@health.gov.au to urge change. The background to this issue follows.
As of 1 July 2012, the PBAC have made changes to the way amino acid-based formulae like Neocate or Elecare can be prescribed for children under 24 months. Theoretically, now only paediatric gastroenterologists, a specialist allergist or clinical immunologist can now write these prescriptions.
HOWEVER, paediatricians and General Practitioners can still prescribe these formulae “in consultation with” any of the specialists above. That can take the form of a phone call or email between the GP or paediatrician and the specialist and the patient must also have an appointment to see the specialist. They have also made allowances for waiting lists to see specialists.
Our concerns remain:
- we think the PBAC have over-estimated the level of awareness of the condition among the general practice and paediatrician population. Paediatric gastroenterology is a relatively new field, only emerging properly in the 1980s and though it will become their bread and butter, paediatric registrars are still not required to do a GI rotation during training. This decision will increase their reticence to prescribe these much needed forumulae even in consultation;
- we don’t think that the PBAC have sufficiently taken into account the prevalence of cows milk protein intolerance (2% of the infant population under 1 yr) and soy intolerance (approx 1%). This equates to about 6,000 babies each year in Australia. Admittedly all of these are not severe enough to require the prescription of amino-acid based forumulas;
- we don’t think the PBAC have sufficiently taken into account the population of specialists now required to see this larger population of children.
What you can do to help change this:
- Write to the PBAC expressing your concern
- Write to the Federal Minister for Health and the Opposition spokesperson expressing your concern
What you can do for your child in the mean time:
- If CMPI is suspected and you are breastfeeding, try eliminating cows milk-based substances from your diet.
- If this works in part, but does not entirely fix the issue, consider eliminating soy based substances from your diet.
- Consult a paediatric dietician for advice on how best to eliminate these items from your diet.
- Contact the RISA Helpline at firstname.lastname@example.org or 07 3229 1090 [Message Bank]
- Call the Australian Breastfeeding Association’s Helpline on 1800 686 268
- If the issue is worsening and your child is clearly in pain, present at an Emergency Department of a Children’s Hospital. This is probably the best way of jumping the queue to see a paediatric gastroenterologist.
- RISA can put you in contact with a paediatric gastroenterologist who is happy to do videoconference consultations with patients and their GP in rural and regional areas. Please contact RISA on email@example.com for more information.
Please see below our correspondence with the PBAC and Minister for Health on this issue.