Shock cancer diagnosis for startup champion
Startup champion Marian Johnson, chief executive of the Ministry of Awesome, has stepped down after a shock cancer diagnosis.
Christchurch-based Johnson says she may be forced to return to the United States for treatment and will no longer be able to continue to prioritise her work helping startup companies thrive and increase the representation of women in the tech and startup sector.
For the past seven years Johnson has led the startup hub, working with high-growth startups throughout the country.
She officially stepped down as chief executive on Friday and is now working two days a week on the programmes that she is most passionate about – Electrify Aotearoa and Electrify Accelerator – aimed at supporting women-led startups.
Johnson has been diagnosed with multiple myeloma, a type of blood cancer. Initially, she thought the symptoms she experienced was due to a pinched nerve.
Multiple myeloma develops from plasma cells in the bone marrow. It is treatable but not curable.
Originally from the US, Johnson has lived in New Zealand for 17 years. She never intended to return but said there were better treatment options in the US compared with just one available to her here. She will be treated with constant chemotherapy for the next four to five months and will then prepare for a stem cell or bone marrow transplant.
“What we have decided is I will go through this first process here in New Zealand and we’ll take it all the way through to the stem cell transplant, see what happens,” she said.
“With multiple myeloma the aim is to get to zero myeloma but it always comes back. Whether your remission is three months or three years or 10 years or 20, it is really unknown so you have to hope for the best and constantly monitor it.
“The results from that are hopefully great but it’s [the stem cell transplant] a very intense operation to go through.”
If her cancer comes back, Johnson could benefit from a treatment using the drug Daratumumab, that is not offered in New Zealand, despite being a routine and highly effective treatment for myeloma cancer in 49 other developed countries.
“It costs $10,000 a shot and you need a shot a week for the first time period,” she said. “Yeah OK we could scrape that together by remortgaging the house and compromising our future but generally most New Zealanders, how are they going to do that? If they were Australian, English or American they wouldn’t have to because it’s commonly offered. When it comes back you have to go to the next level of strategy. In New Zealand there is no next level, and so that’s when we’ll need to consider what happens next and I’d have to go to the States.”
Since starting chemotheraphy, Johnson has been saddened to leave her main work but remained committed to supporting startups. She said the country needed to double the 2400 startup companies it currently had to make a material impact on the economy.
“We want to transform the New Zealand economy through startup innovation. We all know that eventually we need to be transitioning from what is essentially an economy based on primary industry that is no longer sustainable or providing equitable returns that does not lift all boats, and transform that to a knowledge economy where we can have higher valued jobs.”
The Ministry of Awesome was set up in 2012, originally as a co-working space, as a way to help build businesses out of the rubble following the Christchurch earthquakes.
Since then it has grown significantly and works with hundreds of founders each year.
It expects to have 600 entrepreneurs through its recently launched Startup Aotearoa programme each year and around 70 through its incubator programme Founder Catalyst. The programmes are run alongside Creative HQ and funded by Callaghan Innovation.
Christchurch is one of the fastest growing startup cities in the world.
Johnson was told by her doctor in New Zealand that she had three to five years to live. She said The months ahead were uncertain, but she was feeling hopeful about her outlook. She is currently taking a drug called Lenalidomide that costs $800 a month.
“I’m OK, I actually don’t identify with the diagnosis. I feel really positive about my ability to survive this, mostly because of the conversations I’ve had with a doctor at the University of California, San Francisco, which clarified things for me and let me know what my options are, and there are multiple options. Before that I felt my future was very dark.”
Johnson says she wants others with multiple myeloma to know there are other options for treatment out there.
She finds the situation many New Zealanders find themselves in “unacceptable” and believes Pharmac and the Government need to make drugs such as Daratumumab funded and available as many were missing out on drugs that could save their lives.
“We can’t call our healthcare system a world class healthcare system when this [lack of access] is what is happening to people every day.”
Additional reporting by Kristie Boland.