Parliament rally to present eight petitions for more Pharmac funding for medicines

Freda Evans, one of three sisters with the rare Pompe disease, will be among people rallying at Parliament for more funding for Pharmac. Photo / Michael Craig

A woman who suffers a rare disorder is just out of hospital but she's determined to join the call for the Government to fund Pharmac for more medicines. She has a driving reason - she wants to help her sisters.

When hundreds of people rally at Parliament calling for more Pharmac funding for drugs, Freda Evans of Papatoetoe will be among them.

The 64-year-old has only recently been released from hospital but she is determined to have her voice heard alongside others calling for the Government to fund Pharmac for medicines for a larger range of diseases.

Freda was the first person in New Zealand to be diagnosed with Pompe disease, a rare and inherited disorder that results in progressive muscle weakness including the muscles that control breathing.

She is one of only 11 people known to have to the condition in New Zealand. Sadly for Freda and her whānau, two of the others are her sisters Naera and Yvonne.

While Freda was diagnosed decades ago, Naera, 65, was diagnosed only three years ago and Yvonne, 59, two years ago.

Freda said learning her sisters also had the disease was beyond devastating.

"It took us to another level in terms of whānau stress. It was like history repeating itself," she told the Herald.

Her own diagnosis had a big impact on her parents, wondering which one might have been the carrier of the faulty gene.

"My father took that to the grave. My mother carries that load all by herself now."

Freda is one of few people able to access Myozyme, the only treatment. Her sisters don't receive the treatment.

Asked whether her goal was to have the drug funded for all sufferers in New Zealand, her response was a simple, "hell, yes."

"The Myozyme is not going to cure but it has given me a better quality of life. It has given me the energy to eat. It has given me that little bit more energy to do that bit extra each day. I'm not so dependent on my machine [her BPAP breathing machine]," Freda said.

Allyson Lock, a fellow sufferer who is also on Myozyme through drug company Sanofi's compassionate access, began a petition - one of eight to be presented to Parliament today - calling for it to be funded for late-onset Pompe disease.

Myozyme is funded by Pharmac for infants with Pompe, but there are no infants in New Zealand with the disease, only adults, according to the petition.

Lock's petition said the drug was funded for all ages in more than 75 countries. New Zealand, Iceland and Turkey were the only countries in the OECD (Organisation for
Economic Co-operation and Development) which did not.

"We also don't know if there has ever been an infantile Pompe patient in NZ," Lock said.

The New Zealand Pompe Network currently working on getting Pompe disease added to the newborn screening panel in New Zealand, she said.