Ms. Jacquie Micallef (Manager, Member Relations, Policy & Partnerships, Neurological Health Charities Canada) spoke
Thank you for inviting Neurological Health Charities Canada to testify in front of the committee once again. It has been our pleasure to stand before this committee in the past to testify on behalf of the estimated 5.5 million Canadians living with neurological conditions in Canada. ... more
I would also like to take this opportunity to thank the committee for putting forward many of NHCC's recommendations in your report, “Focussing on the Brain: An Examination of Neurological Diseases in Canada”. The support of our recommendations is very encouraging. It gives the individuals and families we represent a renewed sense of hope that the attention that has been given to research in neurological conditions will continue to be supported, and that attention will be equally given to the translation of the new knowledge we're receiving, which will eventually result, in our vision, in a direct impact on the Canadians who we are here to represent.
As many of you who are familiar with our coalition know, we represent 24 organizations that support Canadians with a range of neurological conditions, including neurodevelopmental, neurodegenerative, chronic, and episodic conditions. Among these varied conditions, NHCC also has a strong representation of rare neurological conditions. These conditions are small in number of incidents, but they are immeasurable in terms of impact on the families, individuals, health care systems, and the Canadian economy.
Individuals, families, and organizations impacted or representing a rare condition are often on the losing end of a numbers game. Often, certain numbers of people are needed in order to conduct clinical trials for new drug therapies, health professionals have little experience in practice with their particular conditions, criteria for assessments are often based on the characteristics of more common conditions, and organizations have small funding bases, which lessens their ability to fund research, programs, and education focusing specifically on their condition.
The following are some proposed solutions, ideas, and comments that NHCC would like to put forward on this topic.
The first is the orphan drug framework for Canada. We would like to say that Health Canada’s commitment to developing a framework for the designation, authorization, and monitoring of orphan drugs is a positive step forward in the treatment of rare conditions. NHCC member organizations, especially those dealing with rare conditions, have strong global relationships, in part due to the fact that there's a small number of experts to draw on in any one country, so that makes their international outreach even more critical in finding those champions.
This framework will provide a place to formalize and elevate that level of international sharing, to elevate the discussions on rare conditions, and to bolster pharmaceutical companies’ interest in developing, testing, and marketing new drug therapies for rare conditions. Also, the knowledge translation and exciting innovations in the realm of pharmaceutical treatments will undoubtedly benefit many of those individuals.
Under other treatment options, we would like to mention the following.
On the term “drug” in the orphan drug framework, one comment we do have is that it may not capture the variety of treatment options that are being researched for rare conditions. An example would be retinal eye disease. The expanded innovative treatment options for these types of conditions include the possibility of stem cell therapy, gene therapy, and prosthesis. These possible treatments may not have a pharmaceutical component, and we would see it as very unfortunate if that type of innovation were to be stalled because it wasn’t captured within that framework. We’d like to make sure that either it’s captured or there is a place for that type of innovation to be considered as well.
Communication devices are another exciting type of innovation. Rare conditions that develop in infancy or young childhood—and, as Dr. Innes said, a number of them do—and that limit a person’s ability to speak or write, or to provide common physical movements in order to communicate, can often lead to the person being presumed to have a low intellect, an inability to experience emotion, or a lack of understanding about the world around them, and the assessment tools that are used to determine cognitive functioning often focus on the physical cues.
I'll give one example. We have representation from a group representing Rett syndrome, which is a very rare condition mostly affecting women. It starts in infancy and is usually determined at around six months to 18 months. The daughter of the president of an organization that we have at the NHCC has Rett syndrome and always has been assessed as having the capacity of a six-month-old. She's 25 years old, and they have always presumed that her intellect was not above that of a six-month-old.
But this exciting new development of eye-gaze technology, which allows her to focus her eyes on symbols or words and different pages, has just opened up the world. They were telling me a story about it the other day. She was at a conference on Rett syndrome. She got agitated, was staring at the word “no”, and by using her eyes was flipping through the pages, which is the way this eye-gaze technology works, to say that she didn't want to be at the conference and she did not want to continue to hear about Rett syndrome. Now, a six-month-old would not be able to express themselves in that way.
It's just amazing that with a slight eye movement, these people are able to gain autonomy and to have a better quality of life, and especially so for the caregivers as well, because for someone whose communication is limited, it's a constant guessing game. These families are now saying that this technology is wonderful.
It does cause a lot of fear and anxiety when you realize that some of the care you've been giving is no longer going to work. My contact said, “I've been tucking her sheets around her for 25 years and maybe she doesn't want the sheets tucked in, and now she's going to tell me.” There is that sort of thing, but it's just amazing that she can gain a sense of autonomy and improve her quality of life.
We've seen this eye-gaze technology. There is a clinician in the United States who has been using it with girls and women who have Rett syndrome. Even a child as young as three years old is using this. In one particular study, she indicated that she felt something was wrong, that she was tired, and that she needed to rest her eyes. A 20-year-old woman indicated that she was hungry, even indicating what her food choice was, and that she was thirsty. This technology has been used with over 100 girls and women in this particular study. In concert with appropriate training and augmentative communication services, it has been found that this technology is highly successful.
In terms of our recommendations, we would like to see some investigation into what is available in the provinces in terms of what is covered across the country. We do know there is a cutting-edge technology, this eye-gaze technology, that is now available in Ontario. We haven't done the investigative process, but we need to know what is covered by the provinces, because we do see this as a really important thing for people with this type of condition or any type of communication-limiting condition.
Genetic fairness is another piece of this. Most rare conditions are genetic, as the doctor has pointed out. Genetic fairness is of course central to our discussion on rare diseases. Canada is the only G-8 country that does not have laws to protect its citizens against discrimination based on genetic information, and genetic discrimination impacts on two key areas of a person's life: insurability and employability.
Neurological Health Charities Canada supports Bill S-218, which was introduced in the Senate by Senator Cowan, and believes that this is a comprehensive bill that will provide the necessary protection for Canadians from discrimination based on genetic characteristics. We'd also like to recognize the championing that Libby Davies has done on this issue. We see the bill put forward by Senator Cowan as comprehensive, as I said, and as really covering off that employability and insurability piece.
In your report, “Focussing on the Brain: An Examination of Neurological Diseases in Canada”, this committee has also recommended that the Government of Canada consider using the results of the National Population Health Study of Neurological Conditions in collaboration with the provinces and territories, as the basis of a pan-Canadian strategy for neurological diseases.
The NHCC would like to see the government invest $3 million over the next three years into the NHCC to develop a framework for a pan-Canadian action plan for the brain that would focus on the key areas that we have put forward in the past, such as research, prevention, caregiver supports, and public awareness education, but also for us to be able to expand our base, to look at those priorities, and to reassess in terms of what the needs are of people with neurological conditions in Canada.
It should also be noted that the National Population Health Study of Neurological Conditions also includes a focus on certain rare neurological conditions and that NHCC expects to receive more information on the incidence, prevalence, and impact of these conditions. We believe that evidence will help to support the case for the solutions we've presented today.May 7, 2013, Parliament
Ms. Jennifer Stoddart spoke
Yes. Thank you, honourable member. These four priorities are just an in-house way—the suggestion came from the personnel—to organize our work because we're constantly bombarded with so much. As you say, there are new technologies and new issues. So what do we decide to prioritize all the questions of privacy that come up? We chose these four. ... more
I'll just, off the top of my head, give you a recent example of each of these. The work can be either prioritizing a complaint or prioritizing an educational vehicle, either a video or publication or a new part of our website, or it could be holding a conference or a publication or a position on draft legislation. So it's the range of all these different vehicles.
As for identity integrity, the example I'll give is that we're soon to release a study on the implications of IP addresses. If you remember in the discussions over the last few years, particularly about draft legislation that has been withdrawn at this time, there was a debate about what you could find out from an IP address if the police had warrantless access to an IP address. Was it just like reading a phone book in the good old days? I don't know if you remember that debate.
In our laboratory we did an online study of what you could find out using IP addresses. We hope to publish that within the next few weeks. To give you a preview—and I think this is going to demonstrate why we kind of stuck to our position that an IP address is more than an old-fashioned phone book—unlike a phone book it leads to other things, other activities and other actions that you may have taken on the web.
In terms of new technology, my goodness, there is a tonne of that. In the coming year we are going to increasingly look at facial recognition analysis. One area that's fascinating and chilling that we've been following for several years in new technology is unmanned aerial vehicles, which we know as drones. How many drones are in Canada? What is the use of them? What are the rules around them? What could go wrong in the use of drones? What are the privacy implications?
As for genetic information, we've funded several studies through our contributions program. We've had some studies done for ourselves. Perhaps the most recent thing we have done is examine draft legislation proposed by Senator Cowan, I believe, before the Senate, Bill S-218, an act to prohibit and prevent genetic discrimination, which is an issue we've been following for some years.
National security has been a huge file for us over the years. I'll talk about the work we did—I was out of the office and the assistant commissioner appeared—to support the recent Bill C-55, An Act to amend the Criminal Code, to implement the Supreme Court decision on cases and conditions for warrantless access.
That's a smorgasbord of what we do.April 22, 2013, Parliament
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Genetic Non-Discrimination Act
An Act to prohibit and prevent genetic discrimination
How does a bill become a law?
Don’t trust Schoolhouse Rock – that’s for Americans. To become a law, a bill in the Canada’s Parliament needs to go through the following steps, and pass when voted on during each step:
- It all starts with the first reading, when the bill is introduced.
- Next comes the second reading, when other MPs or Senators get to debate the bill.
- After that, the bill goes to a committee that studies and amends it line-by-line. Once they finish, the bill goes returns to the House or Senate for the report stage, where anyone can propose amendments.
- The third reading is the moment of truth: no more changes, just a debate and a final vote on whether or not the bill should pass.
- If a bill makes it through all of those steps – in both the House of Commons and Senate – it’s ready to get Royal Assent and become a law.
Status of this Bill
Introduction and First Reading
Ms. Jacquie Micallef (Manager, Member Relations, Policy & Partnerships, Neurological Health Charities Canada) spoke
Thank you for inviting Neurological Health Charities Canada to testify in front of the committee once again. It has been our pleasure to stand before this committee in the past to testify on behalf of the estimated 5.5 million Canadians living with neurological conditions in Canada. ... moreMay 7, 2013, Parliament
Ms. Jennifer Stoddart spoke
Yes. Thank you, honourable member. These four priorities are just an in-house way—the suggestion came from the personnel—to organize our work because we're constantly bombarded with so much. As you say, there are new technologies and new issues. So what do we decide to prioritize all the questions of privacy that come up? We chose these four. ... moreApril 22, 2013, Parliament