Lucas Maciesza received his second treatment of Soliris on Monday, but unless the provincial government relents and pays for future treatments, that is the last he will receive of the lifesaving drug.
Maciesza, of Mount Forest, suffers from Paraoxysmla Nocturnal Haemoglobinuriea (PNH) a rare blood disorder that can be treated only by Soliris. The drug, which has been used to fight PNH in other provinces, the United States, and Europe for several years, costs $500,000 a year.
Lucas was taken in very poor condition to London Health Sciences Hospital two weeks ago, and the doctors there authorized starting Soliris treatment last week to save his life. However, Rick Maciesza, Lucas’ dad, said the treatment calls for Soliris every week for six weeks, and then every two weeks. So last week was the last treatment unless the province steps up to pay for it.
Rick Maciesza added that the doctors were amazed at the reaction of Lucas to the drug after just one treatment.
“He has responded very well to the treatment. He is no longer on his deathbed. Fortunately, Soliris is the ticket,” he said in an interview on Monday. “One day after [the first treatment] he stabilized so much he was able to come home for the weekend.”
Rick Maciesza said his son’s blood counts after treatment were “remarkable.”
He added, “This drug is definitely doing what we were told it would do.”
The treatment on Monday is the last the hospital can afford.
The Toronto Star broke the story about the plight of the Maciesza family, and noted that there are eight other people in Ontario suffering from PNH. Some of them get their treatments covered by their local hospitals, while others do not.
The Star cited Health Minister Deb Matthews in an editorial on Monday, saying that the Liberal government had formed a committee to take these decisions out of the hands of politicians. The editorial quoted her as saying “It is no longer politicians who decide what drugs are covered under the Ontario Drug Benefit Plan and what drugs are not. We have an arm’s length expert group that reviews all of the evidence and makes the very difficult decisions.”
That committee reviewed Soliris twice, and rejected having the government pay for it.
And, even with the media pressure and the issue being debated in the Ontario legislature, Rick Maciesza said, “We still haven’t heard from the Ministry of Health. “We’re convinced now he does need the treatment going forward.”
Maciesza is hopeful, though. “I think the ministry was waiting to see how effective was this drug.”
Lucas was also undergoing tests this week tests this week to check his liver, spleen, and kidneys because of the effect PNH has had on them.
Rick Maciesza said with PNH, those organs cannot process the red blood cells fast enough and the can be damaged. He has likened the disease to a plugged sink with the water still running. If someone an stop the water, the sink will eventually empty.
“They’ve basically been able to shut the tap off. The doctors have been incredibly impressed” by Lucas’ positive reaction to Soliris.
Rick Maciesza, though, has little time for the posturing of the Liberal government.
“The leadership is just horrible. They hide behind this committee. Nobody on that committee knows anything about PNH.”
On the other hand, Lucas’ Dr. Ian Chin-Yee is the chief hematologist at the hospital, “and he’s saying we’ve got to put him on this.”
Maciesza admits his frustration with the government, and noted his MPP, cabinet Minister John Wilkinson, has done little but go along with his colleagues, while Wellington Halton Hills MPP Ted Arnott has taken up the cause in the legislature.”
Maciesza admitted “If it [Soliris] wasn’t working, I’d back off. But the doctors say his blood is the best it’s been in five years.”
Meanwhile, the committee set up by the Liberal government refuses to consider funding Soliris.
“How many people have to die?” Maciesza asked.
Still, he hopes.
He said the family had a nice get-together at home on the weekend in Mount Forest, and Lucas, like any other 26-year-old, was talking about school and a job – if he lives.
Maciesza said, “Everybody in the hospital says, ‘Keep up the fight.’ ”
