Stockholmer Kalle Dejemyr, 20, suffers from Hunter Syndrome, a genetic condition that affects only 2,000 people in the world. The syndrome can lead to symptoms such as hearing loss, thickening of the heart valves, respiratory problems, enlargement of the liver and spleen, and impaired movement. Few people with the disease survive their thirties.
Dejemyr has for the past three years been participating in a clinical trial of a medicine for the syndrome. The drug, Elaprase, produced by Shire Pharmaceuticals, is one of the most expensive medicines ever produced.
Now that the trial is at an end, Dejemyr looked to his local health authority to fund continued treatment.
“I can walk further now, sleep better, and the heart palpitations I was getting have gone,” he told Expressen, adding that the treatment had enabled him to work.
The Karolinska University Hospital said it could not afford to pay for the drug. It put the annual cost of the medicine at ten million kronor ($1.5 million), which would cover the cost of one intensive care bed or the annual salaries of ten doctors.
Stefan Engqvist, chairman of Karolinska University Hospital’s ethics committee, described the decision as “an ethical dilemma.”
“We know that he feels better while on the medicine, but this is ten million that we don’t have. It is an extreme price tag,” he told Dagens Medicin.
Engqvist added that the committee had taken into account the fact that stopping the treatment would not lead to immediate death, even though it could lead to a faster deterioration in Dejemyr’s condition.
Sufferers of Hunter Sydrome elsewhere in the country have been given the treatment. A 4-year-old boy in Halmstad has been receiving the drug since last autumn.
Now opposition politicians in Stockholm is calling for a national solution to the problem.
“The county you live in should not determine whether the health service guarantees a patient’s life,” said Birgitta Sevefjord, Left Party councillor on Stockholm County Council, in a statement on Thursday. She added that the local authority should pay until a national solution was found.
She was joined by Social Democrat councillor Dag Larsson, who said he was “dismayed” by the decision.
“Curing and relieving pain are part of the health service’s job. Decisions not to give relief where it is available must be carefully accounted for,” he said.