Fiona Tolich led the fight to get Pharmac to fund treatment for children with spinal muscular atrophy.
Pharmac has reached a provisional agreement with the supplier, Jansen.
A review of Pharmac last month found that despite 20 people working on medical devices, the agency has not worked out a method to cut costs.
Cancer and rare diseases were also highlighted in the report.
"We see it as a necessity but Pharmac sees it as a luxury."
An estimated 350 Kiwis can now get access to the treatment.
Senior clinicians are staggered a vital meeting was attended by staff with no medical experience.
Pharmac is currently calling for submissions on the proposal, with consultation closing on July 30.
"I would've expected better frankly from him."
