[vc_section full_width=”stretch_row” css=”.vc_custom_1585128400841{background-color: #576283 !important;}”][vc_row][vc_column][vc_empty_space][/vc_column][/vc_row][vc_row][vc_column width=”1/3″][/vc_column][vc_column width=”2/3″][vc_empty_space][mk_fancy_title strip_tags=”true” tag_name=”h1″ color=”#ffffff” size=”60″ line_height=”90″ font_weight=”bolder” margin_bottom=”0″ font_family=”none”]Blog Katie Allen December 2024[/mk_fancy_title][mk_divider style=”thick_solid” divider_width=”custom_width” custom_width=”70″ align=”left” border_color=”#a1aabe” visibility=”hidden-sm”][mk_fancy_title strip_tags=”true” tag_name=”h5″ color=”#ffffff” size=”16″ font_weight=”400″ margin_bottom=”0″ font_family=”none”]Personal experiences – Katie Allen (Canada)[/mk_fancy_title][/vc_column][/vc_row][vc_row][vc_column][vc_empty_space height=”64px”][/vc_column][/vc_row][/vc_section][vc_section full_width=”stretch_row” css=”.vc_custom_1585137324203{background-color: #ffffff !important;}”][vc_row][vc_column][vc_empty_space][/vc_column][/vc_row][vc_row][vc_column width=”1/3″][vc_wp_custommenu title=”Blogs” nav_menu=”274″ el_class=”leftsubmenu”][/vc_column][vc_column width=”2/3″][mk_image src=”https://www.cmtc.nl/wp-content/uploads/2024/12/katie-dec2024-web.jpg” image_size=”full”][vc_column_text disable_pattern=”false” margin_bottom=”10″ css=”.vc_custom_1735123331913{margin-bottom: 0px !important;}”]Happy December from Vancouver Island.
It has been an eventful few weeks here in Canada. I had the always wonderful opportunity to join the Canadian Organization for Rare Disease (CORD)’s annual fall conference. This conference was focused on the major federal challenge Canada’s rare disease community is facing: how to utilize the $1.5 billion the federal government has earmarked for rare disease drugs. We are working towards investing in an infrastructure that can be built upon rather than simply spending the money. Canada’s rare disease framework has always lagged behind the US and Europe, but 2024 seemed to be the year we stepped up, and it’s been powerful and humbling to be here for that change.
This change includes the newly launched Canadian Rare Disease Network out of Alberta’s Children’s Hospital. An incredible opportunity for patients around Canada to have improved access to care and support, no matter where they are in Canada. A critical step in the right direction considering the research shows, that patients who live closest to centres of excellence have better outcomes when compared with those who live more remotely. With such a vast country, it is a momentous challenge the team has taken on, but great strides were made in the first few months with a clear plan for the future in mind.
It’s always interesting in conferences to see where worlds meet, the CORD team discussed a Dutch study on the “spillover effects” on caretakers and the non-medical impacts on the whole family. This study has inspired CORD to try a similar study in Canada. No equivalent research currently exists, but qualitative research suggests similar results. Currently, less than 10% of our studies look at impacts, such as travel, family, and caretaking experiences; instead, most focus exclusively on costs to the healthcare system. A major realization was the poor understanding of the educational impacts of rare diseases on patients.
Another key consideration during the conference was the importance of a timely, correct diagnosis and treatment plan. A person who receives a misdiagnosis takes 3x longer to reach the correct diagnosis than a person who gets the diagnosis right the first time. Likewise, women tend to take an additional year to receive a diagnosis compared to men. All of these factors need to be considered by Health Canada’s structures; just because you’re not treating or calculating the broader impacts doesn’t mean they don’t cost the system substantial money. These impacts include medical-adjacent elements like travel, caregiving, care homes, and home adaptations, but also loss of work hours or early retirement. All individuals must be considered, especially as rare disease caregivers report 30x more mental health impacts than control groups. Overall, there was a large discussion about how to turn our qualitative data into quantitative data that the federal government can utilize when implementing this new Rare Disease Strategy.
With that small summary of the CORD fall conference, I will sign off for this month. I hope everyone has a wonderful holiday and that the new year looks bright. I will say for myself this latest CORD conference inspired a lot of optimism for the future of rare disease work in Canada, we have lagged for some time, but now, we really have some steam building and we are moving forward with a plan and financing. I am excited to see what the future holds.[/vc_column_text][/vc_column][/vc_row][/vc_section]
