On July 28, 2010, I posted an entry (“10 Minutes”) asking everyone to write letters to New Zealand’s Minister of Health, Hon Tony Ryall on behalf of Allyson Lock. Several of us received standard letters of response from Ryall’s office. Yesterday, my best friend received a “personal response” from Ryall – I have copied the text of the letter below. (Thank you V!)
In the letter, Ryall encourages us submit information directly to PHARMAC, which is the NZ government agency that decides which medicines used in the community are publicly-funded.
“PHARMAC is currently consulting on potential changes to its EC policy. You, your friend Monique or Ms Lock may like to make a submission on the discussion document. It can be found on PHARMAC’s website (www.pharmac.govt.nz). Select ‘Patients & Consumers’, then ‘Have Your Say’ and “EC Review’.”
Dear Ms. Shannen
Thank you for your email of 29 July 2010 about enzyme replacement therapy (ERT) for the treatment of Pompe Disease.
I am advised that Myozyme (alglucosidase alfa) was registered by Medsafe for use in New Zealand in April 2009. However, this medication is not currently funded by PHARMAC, the government agency that decides which medicines used in the community are publicly-funded. Ms Lock’s GP, if they have not already done so, can make an application to PHARMAC to fund the medication for her under the Community Exceptional Circumstances (CEC). PHARMAC advises that CEC funding is only available in situations where the disease/condition is rare, or the response to treatment is unusual, or there is some other unusual combination of clinical circumstances. PHARMAC defines ’rare’ and ’unusual’ as less than ten cases nationally.
Where one of the above criteria is met, CEC applications are then further examined taking into account the following considerations:
- the suitability of the pharmaceutical for which funding is sought;
- the clinical benefit;
- the cost-effectiveness of the treatment; and
- The patient’s ability to pay for the treatment.
Where the cost of a treatment being applied for exceeds $15,000 for the total course of treatment, PHARMAC’s 9 Decision Criteria are also considered.
PHARMAC received two applications last year to fund Myozyme under CEC. The Exceptional Circumstances Panel sought further information on these applications and will consider any other applications it receives for new patients applying for ERT for Pompe Disease.
PHARMAC is currently consulting on potential changes to its EC policy. You, your friend Monique or Ms Lock may like to make a submission on the discussion document. It can be found on PHARMAC’s website (www.pharmacy.gov.nz). Select ‘Patients & Consumers’, then ‘Have Your Say’ and “EC Review’.
The Government has provided an extra $40 million in 2009/10 and $20million in 2010/11 for funding medicines used in the community, but it is not possible to subsidise every medicine available in New Zealand.
Hon Tony Ryall
Minister of Health
Let your voice be heard! Patents in New Zealand don’t have to be dying from Pompe, they could be receiving enzyme replacement therapy instead and be FIGHTING POMPE!