February 22, 2005
ADJOURNMENT DEBATE
ACCESS TO HEALTH CARE
The Acting Speaker (Mr. Ted Arnott): The member for Oak Ridges
has given notice of dissatisfaction with the answer to a question given by the
Minister of Health. The member has up to five minutes to debate the matter,
and the minister or his parliamentary assistant may reply for up to five minutes.
Mr. Frank Klees (Oak Ridges): I'm taking this opportunity
to raise this issue in this special debate in the Legislature because of the
conduct of the Premier when I put a question to him on this important issue
during question period.
I appealed to the Premier during question period and asked him to personally respond to my question, which deals with a matter of life and death. I put the question with regard to my constituent, Mr. Rick Sgroi of Richmond Hill, who will die without enzyme replacement therapy. His wife, Mara, wrote a letter to the Premier, and in that letter she appealed to the Premier to step in to do what has to be done to ensure that her husband and other patients in this province receive this important life-saving treatment.
I was disappointed when the Premier refused to answer my question. In fact, he turned his back on me and referred the matter to the Minister of Health. The reason I didn't put the question to the Minister of Health initially is because he himself has refused to deal with this issue on many occasions.
I am appealing today to the Premier, who said when he was on the campaign trail, and I quote what he said at that point in time to every person in this province: "Our job is to make health care work better so you get the care you need, when you need it." Well, Mr. Sgroi and many patients across this province today need health care, and they need it now. It is within the authority of the Premier and the Minister of Health to ensure that enzyme treatment is available. This enzyme replacement therapy, which is helping many patients, is available. It's simply up to this government to ensure that that is done.
The Minister of Health continues to use technicalities, continues to lay the blame on the drug company for the fact that Mr. Sgroi and other patients in this province are not receiving this life-saving treatment. That is irresponsible; it is unconscionable. On behalf of all those patients in this province today, I'm calling on this Minister of Health and this Premier to assume their responsibility.
In a letter to the Honourable George Smitherman, Mr. Sgroi wrote the following: "I am not quite sure what else I can do, what else you want me to do." Here is what we want the Minister of Health to do: assume his responsibility as the Minister of Health to order that these treatments be made available to every patient who needs them in this province.
I look forward to hearing from the Minister of Health or his representative today with a positive answer that people in this province can count on. Don't give us a bureaucratic response; this is a matter of life and death.
Mr. Jim Brownell (Stormont-Dundas-Charlottenburgh): I'm pleased
to rise today to address the House on the important issue of the Fabrazyme and
Fabry disease, and the funding for its treatment. On behalf of the McGuinty
government, I want to express our deepest sympathy for the victims of Fabry
disease and their families. I want to reaffirm that we are committed to providing
the highest standard of health care for those patients who suffer from this
disease. It is estimated that there are currently about 300 people in Canada
with Fabry disease. According to media reports, about 12 patients are currently
receiving enzyme replacement therapy for Fabry disease in Ontario, and clinical
experts have indicated there may be up to 50 to 60 Ontarians who may need treatment.
The cost of treatment for each patient could be up to $300,000 a year. But cost
is not the issue here. It's a question about the effectiveness of the treatment
that concerns us.
While Fabrazyme and Replagal are approved for marketing in a number of countries around the world, there is limited information regarding their funding by public health authorities in international jurisdictions. In Canada, contrary to what the member for Kitchener-Waterloo said in the House on February 16, 2005 -- and I'd like to quote from Hansard where it says, "If you go to Alberta or you go to Quebec, they're still receiving treatment with provincial approval." But no jurisdiction, including Alberta, has made a commitment to fund enzyme replacement therapies for Fabry disease to date.
In September 2001, federal, provincial and territorial health ministers agreed to establish a single common process for reviewing drugs for potential coverage by public drug benefit plans in Canada. Former Health Minister Elizabeth Witmer played a role in establishing the Common Drug Review. Yet she's asked our government to ignore the CDR process and simply fund the treatment without the necessary scientific evidence to back the treatment.
On November 24, the expert advisory committee for the national Common Drug Review recommended that both Fabrazyme and Replagal, two enzyme replacement therapies for Fabry disease, not be listed by participating jurisdictions. All of the provinces included in funding the Common Drug Review process are committed to awaiting the final recommendation on this.
Meanwhile, participating jurisdictions have requested that the Common Drug Review review some additional data regarding Fabrazyme, subsequent to the first review. According to the Canadian Coordinating Office for Health Technology Assessment's Web site, this information is scheduled to be discussed by the Canadian Expert Drug Advisory Committee this spring. At present, both the minister and the Premier have indicated that the final decision regarding whether or not the ministry will fund Fabrazyme will not be made until the government has considered the recommendations that will come from CEDAC and the ministry's Drug Quality and Therapeutics Committee regarding this new data.
The national Common Drug Review process helps us to evaluate the science and evidence for complex therapies, and it is important that the ministry's decision of whether or not to fund enzyme replacement therapies for Fabry disease consider a thorough assessment of this scientific evidence. The government is respecting the CDR process. The ministry will use the recommendations from CEDAC to inform the ministry's consideration regarding whether or not to fund enzyme replacement therapies for Fabry disease.
If the company feels its products will pass the Common Drug Review process, it should continue to provide the drug on compassionate grounds to patients who are currently receiving it, just as it is doing in other provinces. It is important that all provinces be treated equally. It is important that the process be respected.
Ontario is committed to continuing to provide a wide range of effective health care services already available for the management of Fabry disease. This includes cardiovascular care, pain management, dialysis and transplantation. I hope this provides a clear message from our government.
The Acting Speaker: When the member for Oak Ridges had the
floor, unfortunately there was a problem with the clock. The member felt that
his time was up, but in actual fact he had an extra one and a half minutes.
I would like to propose to the House that I recognize again the member for Oak
Ridges so that he can conclude his remarks.
Mr. Klees: What we just heard from the parliamentary assistant
was precisely what I was hoping we wouldn't hear: more bureaucratic justification
for not doing the right thing.
Apart from all the technical requirements and issues at stake, is in fact the integrity of the Minister of Health, who wrote a letter to Donna Strauss on July 3, in his own handwriting:
"Thanks so much for your lovely note.
"I do want you to know that I'm proud to have had an opportunity to meet John and to witness your love for one another." John is Donna's husband, who died this past year.
The Minister of Health goes on to say, "As you struggle to deal with such a huge loss, I wish to assure you that I will make certain of coverage for Fabry. Don't let any stories about the drug's slow approval add to concern about coverage."
It is signed, "Warmly, George."
This is our Minister of Health, who has personally made a commitment to ensure that this coverage is available to patients in this province. I ask the Minister of Health and the Premier of this province to honour their commitment. This is a matter of life and death.