Heartbroken, 28-year-old talks about the loss of his epileptic fiancée: ‘health system failure’

For the first time, a heartbroken 28-year-old man talks about the loss of his
suddenly promised after the brand of your epilepsy medicine was changed without notice. He speaks exclusively to the Herald in the midst of important coronary research.

Jessica Reid, 23, was cremated in the wedding dress she never wore in the aisle.

It had not yet been properly installed, but funeral directors made it work, her mother Karen told the Herald.

On Friday morning of September 20 last year, his mother found his “passionate, thoughtful and loving” future bride dead. “He was face down on the bathroom floor,” Karen said.

Her fiancé Alex Bradley remembers meeting his love when she was still in high school. He was four years older.

He said his first impression of her was: “a little snooty,” and then she invited him to her school dance and he was shocked.

“After the dance I had a totally different impression, I realized how realistic she was.”

Six years later, Bradley proposed to his “animal-loving” girlfriend at the Auckland Zoo. He placed the ring inside the shell of a turtle egg.

“She was amazed. She had no idea.”

The happy couple from Hastings planned to marry in March next year. But now that day will never come.

Bradley said he doesn’t remember much about the day Reid died, “it was all blurry.”

But he remembers the phone call from Karen asking why her daughter hadn’t shown up for work. Reid worked with his mother as a dog groomer.

“I just remember my heart dropped and I knew it wasn’t good,” Bradley said.

“I miss her so much and wish she were still here.”

Heartbroken sister speaks at investigation

Reid’s sister Hannah spoke this morning in front of a courtroom at Auckland District Court, as part of a coronary investigation into the death of Reid, and five other people who died suddenly of epilepsy.

Bradley and Karen sat in the public gallery comforting each other as Hannah spoke. His father Andrew could not be there because he lived in Switzerland, but it remained a large part of their lives.

Hannah said she doesn’t think the rebrand alone killed her sister, but that it was a contributing factor.

“We feel like there has been a massive failure of the healthcare system,” Hannah said.

“Jess’s GP changed the dose of her Logem medication without consulting a neurologist … why was the GP allowed to change Jess’s dose without consulting the neurologist?”

Hannah said a change was needed in the way rebrand changes were communicated to patients and among healthcare professionals, and her family felt that a dedicated party should be nominated to discuss the rebrand, and they cannot assume that other healthcare professionals would.

“Changes to epilepsy medications should only be made by a neurologist, not a GP … pharmacy databases should be linked.

“Jess sought help several times before her death, but never received it.

“An appointment with the neurologist, two minutes to read the neurologist’s notes; that’s all it would have cost him to still be here today.”

Criticism of Pharmac’s decision to change drug brand

This week’s coronary investigation into six sudden unexplained epilepsy deaths comes after Pharmac faced a series of criticism for rebranding lamotrigine, an anti-seizure drug, to a generic form of the drug called Logem.

The rebrand affected nearly 11,000 patients, prompting an internal review commissioned by Pharmac, the New Zealand government-funded drug purchasing agency.

The investigation found no irregularities in the decision to change the brand of the drug it funded, and Logem still remains publicly available, though the agency also recovered the original funded drug that patients could request to use again.

Epilepsy New Zealand CEO Ross Smith told the Herald last week that part of the problem was that patients were not being properly consulted when there was a rebrand, and that didn’t just apply to this drug.

The country’s Drug Safety Authority, MedSafe, warned Pharmac about the rebrand, saying it should be avoided whenever possible as there is a risk of destabilizing treatment for these patients.

They also recommend proper consultation with patients before switching, including describing the risks and tips for coming back if you don’t feel well.

All the doctors who spoke in the research said they did not fully consult the patient before dispensing the different brand of drug and often did not describe the risks.

One said he didn’t even know about the rebrand until he read about his patient’s death in the media.

The problem is overshadowed by the fact that Sudep (sudden unexpected death in epilepsy) affects one in every 1000 young adults (20-45 years old), where no cause of death can be found.

MedSafe has emphasized that anyone who is taking epilepsy medications should continue to take them and if you have concerns you should speak with your doctor.

Chief Coroner Deborah Marshall will continue to listen to families and doctors this week before Pharmac is expected to respond in February next year.

A Pharmac spokeswoman said the agency’s representatives were scheduled to testify in late February 2021, so commenting during the proceedings was inappropriate.