Canada’s Rare Disease Healthcare Policies Need to be Revised to Include Caregivers in the Discussion

The Problem

One in every 12 Canadians will be diagnosed with a rare disease in their lifetime. Two/thirds of these individuals are children and most of these patients experience debilitating symptoms.

Unfortunately, Canada’s current approach to rare disease is not comprehensive and they’ve delayed implementing an approach that is. The biggest issue is that the current approach negates to include caregivers.

Impact on Caregivers

Typically, when rare diseases are addressed, only the patient is considered. However, the burden of rare diseases can dramatically impact caregivers as well.

Of course, rare disease patients are often not included enough in the conversation of healthcare themselves, but if we are going to begin to combat the issue, we need to combat it with a comprehensive approach.

A recent survey in Canada indicated that the impact on caregivers is at the level of a crisis. Caregivers responded that they felt vulnerable, unsupported by the health system, and isolated.

Most caregivers feel they don’t have the time to fulfill their needs, as they are focused on fulfilling all of the needs of the person they are caring for. Regardless of the love they have for this person, they need to be able to support their own mental and physical health as well.

The statistics speak for themselves. 90% of all caregivers in Canada experience financial hardships because of their position. It is not uncommon for these individuals to miss more than 6 days of work every single month because of their responsibilities. Some have to actually have to leave their job all together to care for their loved ones.  

The financial burden itself can lead to strained relationships, social isolation, and decreased mental stability.

This issue is not a new problem, but because little has been done to fix it, it’s been growing astronomically.

The journey of being a rare disease patient or caring for a rare disease patient is a challenging one. There are limited specialists, few or no standards of care, few or no effective treatments, and few or no support services. Misdiagnosis is frequent and the road can be long and tiring.

A better program needs to be established to aid everyone involved in the rare disease community.

The Solution

Progress has been made. We’re just not where we need to be yet. For instance, in the last budget announcement, the Canadian government promised 1 billion toward developing a strategy to combat the exorbitant cost of drugs for rare diseases. This is amazing news which could lead to greater accessibility of life-saving treatments. Other initiatives have also been implemented to combat astronomical drug prices. However, we don’t just need treatments, we also need initiatives which will improve quality of life.

In 2015 the Canadian Organization for Rare Disorders (CORD) created Canada’s Rare Disease Strategy which was a national plan to improve rare disease patient outcomes in the country. Patient advocacy organizations, researchers, government representatives, and policy experts also contributed to this plan. Ultimately, 5 areas were identified as necessitating the most change and increased support- access to treatment, community support, research, expert care, and diagnosis.

In 2016, CORD’s strategy served as a model for Ontario’s health system revamp. They essentially updated their entire health system. A Working Group, created by the Ontario Ministry of Health, formed the Ontario Rare Disease Strategy Implementation Plan. Essentially, they consolidated all of their health services together in an effort to provide more integrated care. Those impacted by rare diseases are encouraged that this change will help alleviate some of the burdens associated with disease. However, it cannot stop there.

What More is Needed-

  • Better coordination of efforts by stakeholders and governments
  • Earlier diagnosis to work to improve quality of life and reduce or prevent symptoms
  • New strategies which include both patients and caregivers in the discussion
  • New strategies which address all facets of care
  • Improved help for rare disease patients and caregivers trying to navigate the resources currently available to them
  • New programs specifically focused on caregivers including financial assistance and psychosocial services

Ideally, both a national strategy as well as provincial strategies are needed in order for efforts to be the most effective.

You can read more about this take on Canada’s rare disease policy here.


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