Filmmaker Helga Rakel Rafnsdóttir has MND. In the news last week, it was reported that she was very upset that she did not have access to the drug Tofersen which research has shown is very beneficial for people with this particular genetic defect and MND and can slow disease.
Helga Rakel is a single mother with a deadly disease – Landspítalinn says no to a drug that slows the disease
In the week since Helga Rakel wrote a message about Landspítalin’s refusal and all the media coverage of her message, Landspítalin’s response has gone from no to yes.
“It is correct to say that I have now received a call from LSH indicating a positive result at the end regarding my permission to try Tofersen. Of course I hope for the best, but based on past experience , I’ll believe it when I see it,” says Helga Rakel.
“I also want to state that as we move forward, I want the way paved for all who need it.” It’s far from just me and Tofersen.”
Has the same genetic disease as his father
Helga Rakel was diagnosed with MND in 2021. Helga Rakel’s father, Rafn Ragnar Jónsson, drummer and musician, died of MND in 2004, aged 49. Helga Rakel was 13 when her father was diagnosed in 1988, but she carries the same genetic condition, SOD1. Today, she is 47 years old.
Helga Rakel says in an interview with Indicator that of course there is some risk in trying the drug. For example, there is a risk in administering the drug itself, as it is necessary to prick the spinal cord each time the drug is administered. “The argument I get from doctors is that they don’t consider it safe enough. They believe the drug is a risk factor because they have to prick their spinal cord once a month. There is a risk to every time, and if you do it twelve times a year, the risk goes up. I mean, MND disease, everyone knows how it ends. It’s just a matter of time. So I’m very interested in taking take a little risk and give it a try.”
Helga Rakel says MND patients have a certain class divide, as some can afford to go abroad for treatment.
“People started to save themselves, people started to go abroad because these drugs are preventive. People start buying tickets to Boston and entering hospitals there or doing research in Sweden .It’s so terrible it must be like this and then all of a sudden there’s a class divide in patients with this disease Not everyone is able to be able to get out of the country to get medication.”
