The family of Lucas Maciesza is happy the provincial government will cover six months worth of life-saving medication, but they see the decision as somewhat of a Band-Aid solution.
“We’re still not sure what’s happening after that,” Lucas’ father Rick Maciesza said on Monday. “It’s crazy that this is what somebody has to go through just to get the treatment to keep them alive.”
Lucas’ case made headlines late last year, after the 26-year-old Mount Forest native was taken in very poor condition to London Health Sciences Hospital, suffering from Paraoxysmal Nocturnal Haemoglobinuria (PNH), a rare blood disease.
At the urging of Chief of Hematology Dr. Ian Chin-Yee, the hospital covered several treatments of the drug Soliris to save Lucas’ life.
But the hospital only covered initial treatments, which were very successful yet left the family wondering if the provincial government would cover future costs for the drug, which are about $500,000 per year. Soliris is not covered in Ontario, unlike other provinces, though some hospitals have paid for the treatment.
Lucas’ fight for the right to obtain Soliris through the health care system was raised in the Ontario legislature by Wellington-Halton Hills MPP Ted Arnott and has been the focus of intense media scrutiny.
Late last week it was announced the government will cover Lucas’s Soliris treatments for the next six months. The government decided it will now consider requests to cover drugs for patients with rare diseases and who have been urgently hospitalized due to an immediate life-, limb- or organ-threatening condition.
“Lucas is on cloud nine,” Rick told the Advertiser. “He’s doing great; the drug works.”
In fact, Lucas received a Soliris treatment on Wednesday at his apartment in Guelph, where he has moved in order to find work. Since receiving his first treatment late last year, Rick said Lucas’ energy has increased, he is more outgoing, his outlook is positive and he is once again talking about plans for the future.
“We haven’t seen that in eight years,” Rick said. And while the family is happy with the progress, they’re still left wondering what happens when Lucas’ six month reprieve is over.
“What do we do next?” he asked. “I don’t wish this on my worst enemy.”
Barry Katsof, president of the Canadian Association of PNH Patients, has been following Lucas’ case very closely. He said providing six months of medication is good for Lucas, but it makes little sense in the long run for him and the seven other PNH patients in the province.
“It’s very temporary,” Katsof said of the government’s decision. “Basically it was to get Lucas off the front page, I guess.”
Arnott was a little more optimistic, but also cautious, in his assessment of the latest News.
“This represents a considerable step forward for Lucas’ case,” Arnott said in a statement. “Still, it is not a complete solution as it appears to deny coverage to those who have not undergone urgent hospitalization.”
He added, “Let’s hope no Ontario family will have to go through the protracted stress and uncertainty that the Maciesza family experienced in large part due to government inaction.”
Rick said Arnott deserves a lot of credit, despite not being the MPP in the Maciesza’s riding, for getting the government to finally act.
“He’s been very, very supportive,” Rick said. “He just jumped right in and took charge.”
But Rick can’t help but be concerned about for future, and he urged the government to cover the treatment so desperately needed by people like his son.
He also questioned the government’s logic in refusing to cover a “pro-active” and life-saving drug like Soliris, while it pays millions of dollars for other items related to PNH, such as bone marrow transplants, kidney and liver transplants, dialysis and other medications and procedures.
“That stuff is covered, but allowing someone to lead a normal life is not,” Rick said. “I wish we would have had this two years ago … For the life of me, I don’t understand what’s taking so long to make these decisions.”
Katsof, himself a PNH patient, said given the proven results of the drug, it should be covered, regardless of the cost.
“How could you not support this?” he asked. “What price does a human life have? How can a government even question this?”
Those are questions the Maciesza family has been asking for months – and still they wait for a definitive answer.
