Pharmac releases drug wish-list to be more 'transparent' but advocates say it gives false hope

Pharmac has for the first time released a list of all the drugs it wants to fund if it had enough money - but some advocates say without the extra money to go with it, all that releasing the list does is provide false hope.

Little Harlan and his big brother Lincoln are happy wee chaps. Their start to life was a bit harder than most as they both have spinal muscular atrophy (SMA) - a neuromuscular disease.

Both used to struggle to even roll over - but that's all changed.

"They actually lost the ability to roll and now it's easy for him, he can take off when you're not paying attention," their mum Lani McLeod told Newshub. 

The treatment they need isn't funded in New Zealand but the boys were granted compassionate access to it through a drug company, and the change is incredible.

"A few days their energy levels skyrocketed, they didn't get tired doing basic things," McLeod says. "Their life now will be so much easier."

Pharmac, the Government's drug-buying agency, on Wednesday revealed a list of the drugs it wants to fund - if it had the money to do so - and there are 102 applications on that list.

The treatment the boys get is one of them. 

"Putting it on a list doesn't change the fact that it's not available - it just shows the Government what needs to be funded and what Pharmac wants to do," says McLeod. 

And it'll cost a pretty penny. To fund all of the drugs on the wishlist it'd cost $418 million for just this year. In May's Budget, the Government announced a boost of $200 million - but that's stretched over four years.

Of that boost, just $40 million was allocated to 2021 - 10 percent of what the list would cost. Remember, these are the drugs Pharmac has already decided it wants - it just needs cash. 

So, why isn't Pharmac asking for enough money to fund them all?

"I guess that's a decision for the Government of the day," CEO Sarah Fitt told Newshub. "We got the $200 million over four years."

The list was released in alphabetical order, meaning no one knows where their particular drug sits in terms of priority. 

"If a supplier knew that their product was number one on the list there wouldn't be much incentive for them to give us a better price, and obviously we want a better price because that gives us more money to fund more medicines," says Fitt. 

"That's why we've taken the decision to publish the list but in alphabetical order."

Among the 100 applications is the Epipen, used to quickly treat severe allergic reactions. It's not funded in New Zealand.

"We'll keep pushing but after a while your head gets a bit sore hitting against a brick wall," says Allergy New Zealand allergy advisor Penny Jorgensen. 

"But we'll continue to fight the battle."

There is hope for that one. Health Minister Andrew Little told Newshub he has a personal desire for that to be funded. 

"I have a personal view that, particularly for children who are at risk of anaphylactic reactions, it will be a useful thing to know that they've got ready access to that," he told Newshub. 

"This is one of these 'watch this space' sort of issues... I'm not in a position to make any promises but it seems to me something we could do."

Little stands by Pharmac's processes for choosing drugs to fund. 

"I think the committee Pharmac has set up to make these decisions includes those with senior clinical experience as well as health economists and they're looking at all the data and weighing up what the best use of the funds we've got, the conditions that we have to provide medicines for, and the available medicines.

"The reason Governments have Budgets is because there are limits."

Pharmac couldn't tell Newshub the exact number of patients who would benefit if the drugs on the list were all approved, but it's estimated to be around 500,000 Kiwis. 

And now that the list is public - it's in plain sight. The Government cannot turn a blind eye to calls for more funding, when that money could change the lives of that many New Zealanders.