Hope in the treatment of amyotrophic lateral sclerosis

A text by Davide Gentile

The small pocket of solute is hung on a luminaire in the kitchen of Nancy Roch.She receives a medication, EDARAVONE, by intravenous.Each drop is one more hope for this woman who suffers from amyotrophic lateral sclerosis."It cost me almost $ 25,000," she said.Lots of money to get to Japan and receive the medication from a doctor, which is the precursor of this treatment.

She brought back the equivalent of a three -month treatment of Edaravone."It may be back in December," she said.The drug, which is not approved in Canada, is not reimbursed.But SLA victims often die in less than five years.Nancy Roch is therefore ready to pay the big price to obtain this medication, which slows down the evolution of the disease in some patients.

"It does not heal the disease, it slows down progression," said neurologist Rami Massie, specialist in the Montreal Neurological Institute.

The Edavarone was tested with a large group of 140 patients and the results arouse hope."There were 30 % slowdown in progression for those who received the drug compared to those who did not receive it," said Dr. Massie.

The drug is only effective in patients who are at the start of the disease and who have a good respiratory function.

His colleague Geneviève Matte of the University of Montreal hospital center shares a very prudent optimism."It can help some patients, who are in the first year of the disease," she said.Ms. Matte also specifies that the Edaravone does not overthrow the process of ALS, but can slow its evolution.

It is a first breakthrough for a long time.About sixty studies carried out on different molecules since 1994 have all failed."To have a success is very encouraging for the community," continues Dr. Massie.Enough for him to prescribe the treatment at Nancy Roch and supervise his effects.

The order of nurses prohibits its members from administering the drug

Nancy Roch must obtain it elsewhere and pay the entire invoice."It costs $ 145,000 a year in the United States," said Dr. Massie.This is what forces Nancy Roch to go to Japan, where it costs less." It's hard.It's hard, sometimes I would like to be helped, ”says Roch to Dr. Massie in her office.

“There are drugs.It's just to have access, but you have to fight all the time, ”she says.Fight to get and pay the medication, but also to be administered.Even if Dr. Massie supervises treatment in the hospital, he cannot be administered by a nurse.The Quebec Order of Nurses prohibits its members from administering EDARAVONE, contrary to what is happening in Ontario and Nova Scotia.

Nancy Roch therefore receives the injection at home from a nurse who wants to keep anonymity."I would risk sanctions if my identity was revealed," said the nurse.She says she acts "simply to do good" and help Nancy Roch in her fight against disease.

This is an example of the confusion caused by the status of this medication.Increasingly recognized by the medical community, EDARAVONE is not approved by Health Canada.A spokesperson for this ministry says that the company producing the drug has not yet submitted a request to this effect in Canada.

If the company decides to move forward, it flows normally about a year before a medication is authorized.

Even if the Edaravone is far from being synonymous with healing for the ALS, the doctor sees a step in the right direction.“Within 10 to 15 years, we think we are offering a treatment that slows down the disease enough so that patients can continue to work and work.»»

The disease is better known since the famous "Ice Bucket Challenge" of 2014. Thousands of people financed research by launching themselves as a challenge to pour out on the head of the buckets of ice water.

Nancy Roch remains combative and tries to keep in shape."I try to buy time and hope," she says.She will return if necessary in Japan to obtain the drug at a high price if he is not approved soon in Canada." It's my life.So I would be ready to invest everything I have.»»