Célia Curdy-Neves, a 37-year-old French mother-of-one from Isère (Auvergne-Rhône-Alpes), who has been living in Denmark for 14 years, has a rare cancer called diffuse midline glioma (DMG).
The cancerous brain tumour had been diagnosed as incurable, and in November 2018, Ms Curdy-Neves was given 18-24 months to live, reports French news service FranceInfo, who conducted the interview.
Yet, Ms Curdy-Neves had been scheduled to travel to the US to undergo experimental treatment at the Presbyterian Hospital in New York, starting April 6. If successful, the treatment could help extend her life by 10 years or more.
Borders close
But before she could go, the US closed its borders to passengers from Europe (on March 11), and three days later, Denmark also closed its borders and imposed confinement conditions due to the spread of Covid-19.
Ms Curdy-Neves, who lives in Denmark with her husband Sebastian and three-year-old daughter, said: “Covid-19 is stopping me from accessing the last existing treatment to slow down the progression of my brain tumour, which I have been fighting for 16 months.
“When I heard that the US was closing its borders, I said: ‘No, it’s not possible. That can’t be for me. I’m not going [to the US] to just do some shopping!’”.
Ms Curdy-Neves had already attempted to have the treatment in August 2019, but at the time, her tumour was deemed unsuitable for the protocol, forcing the experiment to be delayed.
She said: “I was ready; so was my suitcase. After six weeks with no treatment, I was ready to go all in to start the cure on April 6 in the United States.”
Soon after borders closed, her oncologist tried to get a political exemption to allow her to travel, but on March 24, the Presbyterian Hospital said that it would not be able to deliver the treatment in any case, because it was “under too much pressure” and had to prioritise Covid-19 patients.
The United States has now seen the highest number of infections in the world, with the total number passing 100,000 last week. New York has been especially affected, with almost two fifths of confirmed cases (84,025) of the entire country (216,357), and 2,000 deaths so far.
Treatment in Europe?
Ms Curdy-Neves has since asked if the treatment could be sent to Europe, and supervised from the US remotely - especially as a hospital in Copenhagen has agreed to help. “But the laboratory said no”, she said.
The treatment, ONC21, is produced by US pharmaceutical company Oncoceutics, which had previously said it would develop the cure in Europe by the end of 2019, but later delayed this to 2020.
“[And] in February they said no; they changed their minds. Few patients suffer from this condition so there is not much money to be made,” said Ms Curdy-Neves.
“I am struggling to accept this refusal of care. How, ethically, can the lab refuse access to a treatment? For me, they are refusing to help someone in danger.
“How am I going to explain to my three-year-old daughter that she will soon not have a mother because people are refusing to put some pills into boxes and send them to me? It is abhorrent, at a time when you can order whatever you want [online] and receive it to your door within three days.”
The lab did not reply to calls for a comment.
Now, Ms Curdy-Neves has said that she would be ready to take legal action, but this would require a lot of time and energy: “Two things I do not have much of,” she said.
'The positive side of confinement'
Despite checking everyday to see if the US has plans to lift its travel ban, the lawyer is now trying to make the most of her time left, and enjoy time with her husband and daughter during this period of confinement.
She said: “We are making so many memories. That is the positive side of confinement. All these moments together that she will keep for later...My husband and I know that we will not grow old together. So I am trying to put the cancer to one side, and enjoy life’s small pleasures.
“I was already lucky enough to celebrate my 37th birthday, despite doctors giving me [a prognosis of] such a short amount of time.”
But Ms Curdy-Neves says she is still shocked by the “strange pause” that confinement is imposing on her race against time.
She said: “During this time, I am not being treated. I am at the mercy of my tumour, which is growing at its own rate, and which tomorrow could paralyse me, and the day after that, stop me breathing, and kill me.”
She acknowledges that once the borders to the US re-open, the Covid-19 situation will have to be at a level “so that I can be admitted into the hospital”.
So far, the US has not stated a definite date for the reopening of its borders. Denmark has said that its borders may reopen on April 14, “but everyone thinks that this will be extended”, said Ms Curdy-Neves.
