Imagine being in a battle for your life against a rare disease – and having to fight the health care system for treatment.
That is the situation that Lucas Maciesza (pronounced Ma Chess-a), 26, finds himself in. He has Paraoxysmal Nocturnal Haemoglobinuria (PNH) a rare blood disease that can be treated by a drug called Soliris.
His problem is it costs $500,000 a year for that drug. His fight for the right to obtain Soliris as part of Canada’s health care system was raised in the Ontario legislature and has been the focus of intense media scrutiny since it came to light. It seems that in some parts of Ontario, hospitals with extra cash can provide the drug, while others places cannot – and those patients are denied. Elsewhere in Canada, other provinces pay for Soliris; Ontario does not.
Maciesza was hospitalized at Groves in Fergus for over two weeks and he was then moved to London Health Science Centre. In an interview on Tuesday morning, his father Rick said the London hospital, under the urging of Chief of Hematology Dr. Ian Chin-Yee, started Lucas on Soliris that day.
“It’s happening as we speak,” said Rick Maciesza.
He had great praise for the doctors at Groves and for Chin-Yee in London, but is still shaking his head over the Ministry of Health’s refusal to date to supply his son with a drug that can save his life.
Lucas Maciesza was admitted to Groves with a clot on his liver. PNH is a complex disease that affects many parts of the body and hemolysis (the destruction of red blood cells).
It is an acquired mutation that causes some or all of a body’s red blood cells (RBCs) to be destroyed by a process called hemolysis. PNH is a complex disease with signs and symptoms that are nonspecific, unpredictable and often similar to those of other diseases. In addition, PNH presents uniquely in each person. If someone has PNH, some or all of the RBCs may be missing an important protective protein. Without that protein, RBCs are prone to destruction by a part of the body’s defense system.
Rick Maciesza explained it by saying it is like a sink that is plugged with the faucet running. In the case of Lucas, the medical community is simply cleaning up the floor while the faucet continues to run and spill over the sink. With Soliris, the faucet would be turned off, the sink would be allowed to drain, and the system would eventually return to normal.
In this case, “The ministry feels mopping the floor is the way to go.”
As for Lucas, Rick Maciesza said, “It’s come to a point with this crisis. It’s at a point now where he really needs this drug to stay alive.”
The Maciesza family has been dealing with Lucas’ illness for nearly eight years.
“Anger is not going to solve anything,” Rick Maciesza said. “But patience is wearing thin.”
The Maciesza family has investigated treatment in Europe and the United States, where the drug is used for PNH and is provided free to patients. There are about 4,000 cases in those areas, and only eight in all of Ontario. British Columbia and some Maritime provinces provide Soliris free to those who need it, but the family feels Ontario has been dragging its feet.
Arnott raised the issue in the Ontario legislature, pleading with Minister of Health Deb Matthews to provide the drug for Lucas. Ironically, Matthews represents a London riding and it is a London hospital that has started paying for Lucas in the short term, hoping the Ministry of Health will agree to pay for future treatments.
Arnott said, “The government of Ontario must review its policies at once to accommodate the treatment Lucas needs. This is, literally, a life-or-death situation.”
After he learned about the situation, he contacted senior staff in the office of the Minister of Health, urging the minister’s immediate intervention.
Arnott asked Matthews in the legislature on Monday, “We request that immediate action be taken by the government of Ontario and Soliris be approved for Lucas and all who are suffering with this disease.”
Arnott read from Rick Maciesza’s statement, “When will the minister take that step to save Lucas’s life?”
Matthews responded she has asked for a quick review of the evidence to ensure that people who could benefit from this drug do gain access. But in a supplementary question, MPP Christine Elliott, who serves as PC critic to the Minister of Health, noted that Health Canada has already approved the use of the drug.
She further pointed to inconsistencies in providing the drug based on geography.
“This is a clear example of some people being able to get treatments in hospitals where they live, while others are left out in the cold,” Elliott told the legislature.
Rick Maciesza said, “We are very grateful to the hospital for making that decision. Our prayers are being answered.”
He said of Arnott. “Ted Arnott gets it. It’s not supposed to be a political situation.” He added that, to date, Lucas is “coping.” But, he said, “When you know something’s out there …”
Rick Maciesza said the community has been incredibly supportive of the family’s plight, but the response has mainly been, “It’s not a privilege [to receive treatment] it’s a right. We don’t know what else to do.” He added the family was reluctant to take a step to go public with Lucas’ illness and lack of treatment.
“We don’t want to do this, but we thought universal health care was for everyone. Imagine if they wouldn’t have funded insulin.” He noted, “I paid taxes for years,” but that does not seem to count in this case.
He said it would cost $8-million to pay for Soliris for every person in Ontario with PNH. But, he explained, other hospital costs and time to provide treatment would vanish. Lucas was receiving blood transplants every two weeks, and that, too, takes time and money.
He has talked with 12 people across Canada who suffer from PNH, and they all told him the same thing: with Soliris, they can live with the ailment.
Now that Lucas Maciesza has started on Soliris, his father said it will be up to the province to decide if he will live or die. Only the government can provide that drug.
