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Volunteer Advocate
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Access to the Care We Need

May is Cystic Fibrosis Awareness month, which culminates in The Walk to Make Cystic Fibrosis History on May 28. This year, we are raising awareness about cystic fibrosis, and the fight to access to medicine. Throughout the month on this blog we will be sharing perspectives from our CF community, those living with CF and loved ones of CFers, answering some of our big questions.

Today we’re asking: Why do you feel that people with CF and other rare diseases should be able to access the drugs and care they need?

  • “I feel like this is a rhetorical question. People with CF and rare diseases should be able to access the drugs they need because they NEED them. This need is not subjective. These drugs improve our health and therefore our quality of life. Think of all the good we could do if we lived longer and abundant lives!” – Jess Best, Lives with CF
  • “Doesn’t everyone deserve a fighting chance to lead a “normal” life? One that they don’t have to fight to breathe or for the medications that can keep them healthy! Access to these ground-breaking drugs can aide in lowering hospital stay frequencies and longevity and allow them to just LIVE.” – Gillian Maramieri, mother to CF champion Matthew
  • “We feel that CF patients should have access to all the drugs and care they need because they can be life changing. They can give these people a better quality of life.” – Cristina and Ryan Kinsella, parents to Quinn who is living with CF
  • “Rare diseases are usually lesser known than common diseases. All we want is the same chance to live, and for that to happen we need access to the medications that are currently available and ones that are there but not accessible to everyone who could benefit. I feel it’s cruel to not make these drugs available to all who could benefit. It would mean less time in the hospital and in the end saving two things; people’s lives and money.” – Liam Simpson, Lives with CF
  • “The importance of access to medicine and drugs needed can’t be put into words. The life expectancy has changed significantly since I was born, 25 years ago, that I can only imagine where it could go if we had access. The development and research that has been done is incredible, and if we aren’t able to access life changing medicines, it almost feels like a false hope we have been given.” – Jordan, Lives with CF
  • “I feel that persons with Cystic Fibrosis and other rare diseases should most definitely have access to the drugs and care they need because every life is worth saving! We live in Canada, where the median life expectancy of a person with CF is the highest in the world.   We gained this enviable position because Canadian Cystic Fibrosis patients have access to the lifesaving drugs and treatments they need. The pharmaceutical companies that develop these drugs need to review their pricing policies so that the drugs are affordable enough to be covered by provincial and private drug plans, and the Canadian Federal government needs to seriously look at universal drug coverage to keep drug costs under control. Two examples of treatment breakthrough drugs are Orkambi and Kalydeco. These drugs have been proven to improve clinical outcomes in patients with CF yet every day that CF patients are denied access to these drugs is another day of potential life limiting lung damage.” – Brenda Chambers-Ivey, Lives with CF
  • “As science advances, so too do the opportunities for those with CF and other rare diseases to live full and unhindered lives. Pursuing education, careers, and families of our own is something that is now possible. However, these opportunities are contingent on us being able to effectively and efficiently access specialized care and medications. To me, there is more frustrating than knowing there are drugs out there that may help improve my quality of life and extend the time I have with my family, but not having the opportunity to access them.” – Megan Parker, Lives with CF
  • “I believe, in Canada a country prided by its health care, it is possible to provide these drugs and treatments, hence why should and would they be denied? Medical breakthroughs happen all the time, one drug or treatment could lead to many more especially when it comes to genetics and treatments for such rare diseases.   People deserve a fighting chance, especially if it is available, when they work so diligently at maintaining their health.” – Alex McCombes, Lives with CF
  • “Believe people with diseases such as CF should be granted access to drugs like ORKAMBI that have been proven to be beneficial to the majority of patients. Denying someone the right to health, which leads to happiness and fulfillment, is the same as denying someone their basic human rights. Are the rights to life, as stated in the UN charter of rights and freedoms, not to be respected if members of government deem the cost unacceptably high? To deny a Canadian access to something that could change their quality of life, bringing it to a level equal to that of their peers, is to take away their hopes and dreams. Just because a person with a rare disease was so unlucky as to be born differently than the majority is no reason to deprive them of medical care and advancements in a country as progressive as Canada.” – Chelsea Gagnon, Lives with CF
  • “Living with a chronic illness is a constant struggle all on its own. Knowing that there are drugs available that could potentially change our lives but are too expensive to pay out-of-pocket for is devastating. Our options for healthcare and medication should not be based on our income, but instead on whether we can truly benefit from these new treatment plans. We dream to be productive, successful members of society, and having accessible drugs and care is a critical part of that dream.” – Meaghan Macrury, Lives with CF
  • “I think I can speak for CF in the fact that we have seen an increase in our life expectancy, in part because of these advancements in treatment through new medication. It is important to support and utilize these new therapies for CF and when you clog the access to treatment outlet for the intended patients it is to benefit it could have a trickle effect back, seeing the pharma side of things, why would companies try to create therapies for patients who can’t have them for the to see returns.” – Jim Best, Lives with CF
  • “People with Cystic Fibrosis and other rare diseases require daily medications and preventative treatments to live longer and healthier lives, which is a right of all human beings. They should not be expected to pay for life sustaining drugs and treatments considering they are already burdened with so many struggles.” – Trish Vendittelli, mother to CF warrior Sloane
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