Masterton woman feels abandoned after medical funding rejected

Allyson Lock with her husband Steve has had a petition for rare medical treatment rejected. Photo / Wairarapa Times-Age

Masterton's Allyson Lock feels she is not part of the "team of five million" after her petition to get government medical funding for a rare disease she has was rejected last week.

Lock has Pompe, a disease that weakens people's core muscles, making it difficult to breathe. It also affects the legs.

Lock – who was diagnosed with Pompe in 2010 – is one of only 11 people in New Zealand with the disease.

In May 2019, Lock lodged a petition with the Government to get Pharmac to fund Myozome, which is the only approved medicine in the world available to treat Pompe.

Almost two years later, the Beehive has rejected the appeal for Pharmac funding.

Although Pharmac was ultimately accountable to the Minister of Health, a report in response to the petition stated that the Government was satisfied that Pharmac's decision-making process [in the allocation of funds] was robust and evidence-based and did not believe it was the Government's role to influence which medicines should be funded.

Ironically, the Government acknowledged Lock for her advocacy work towards Pompe, honouring her with the Member of the New Zealand Order of Merit in 2019.

However, it still wouldn't budge.

The Government's decision did not go down well with Lock, who has been fighting for more than a decade for the funding.

She said she was tired of having to beg for help and that the latest rejection had ultimately made her feel like she was not part of the team of five million.

"I've literally begged successive governments for my life and the lives of other patients, and none of them have ever cared enough to help us.

"Our Prime Minister [Jacinda Ardern] is lauded around the world for being so caring, but when you have a disease like mine, [the government] don't care. Because if they did, they could change it.

"It makes me feel like I'm not one of the team of five million.

"Our Prime Minister likes to roll that out, but I'm not one of them.

"It is literally a matter of life and death, and it's turned from sadness to anger for me. I'm just so sick of it."

Although diagnosed with Pompe more than 10 years ago, Lock said she'd had disease-related symptoms since she was a child.

As the disease was so rare doctors struggled to identify it at first.

Lock, who is also the president of the New Zealand Pompe Network, applied for medicine funding when she knew she had Pompe, but her application was declined.

She then went to Florida in the US in 2011 for six months to trial a new medicine.

She was on that medicine for five years until it was cancelled due to investors pulling funding for the treatment.

After that, she went nine months without treatment which resulted in her health deteriorating quickly.

"I got to the point where I could only either have a shower or make dinner for the family. I could only do one of those things [per day]. I was bed-ridden. That's all the energy I had.

"The government still wouldn't fund, so I begged the drug company [to help]. I said, I know you don't owe us anything, and the government should really stump up, but please help if you can."

The drug company that produces Myozome answered Lock's SOS, and she started to receive compassion treatment and has so ever since.

"We're ping-pong balls between a pharmaceutical company and a government that doesn't care, so they said yes, we will give it to you," she said.

"You have no idea how grateful I am. They gave me my life back. Now I can have my shower and make dinner, re-do furniture and go outside, and go and visit my kids."

"I'm taken care of for the moment, but no thanks to the Government."

While Lock was getting the treatment she needed, she said many others with rare diseases did not get medication funding and needed immediate help.

That was the reason behind her petition application.

She said the Government needed to help others who can't get the treatment they need.

"There's about 300,000 out there in New Zealand who are affected by rare diseases." she said.

"The government needs to acknowledge there are people like me out there that have to beg for our lives and then rely on the charity of other people to save our lives.

"It's not good enough. I feel worthless. Where am I in the team of five million that Jacinda keeps blabbing on about? I'm nowhere."

Despite the funding rejection, Lock said she wasn't going to stop petitioning for the cause.

"No, not until someone in the government decides we're worth saving. And until now, nobody has."

She said her next move was to spread Pompe's awareness among the medical community in the hope for it to become more recognised as the rare and fatal condition it is.

"We're sending every GP in New Zealand the information about Pompe disease, and they will be getting a covering letter, and a zebra stress ball that we hope will remind doctors of rare diseases.

"We're hoping with doctors learning what Pompe is; more people will get tested and then get treated. Hopefully, it won't take 20 or 30 years for someone else to get diagnosed."