The Importance of Giving a Voice to Patients and Carers

A few days ago, I had the honor of presenting at this year’s Patients as Partners Europe virtual conference, an industry forum centered on exchanging ideas about how to more readily provide therapeutics to patients. A vast majority of attendees were from the pharmaceutical industry, clinical research organizations, and the healthcare sector, although patients and carers representing various diseases participated, too.

Together, another caregiver and I highlighted the challenges that caregivers face in our roles as providers of care for our loved ones with hereditary ATTR amyloidosis.

The conference is a good example of how a constructive shift seems to be happening now in the landscape of treatment development for certain types of rare diseases. The fact that patients and carers are now invited to provide input shows a recognition of the value that both sides offer clinical researchers working to formulate medications for sufferers.

Medical agencies now want to hear what we have to say. This has been a long time coming.

Back in the late 1970s and early ’80s, when my husband’s grandmother, and subsequently father, were stricken with this same hereditary disease, both of their situations were grim and hopeless. During that period in Malaysia, where they lived at the time, no support was available, and doctors offered no knowledge about what ailment might be affecting them.

My husband, Aubrey, was a teenager when his grandmother became sick, and he took over as her main caregiver. The tasks of cleaning her, cooking for her, and ensuring that she was comfortable fell on his shoulders, as other family members either were away or had to work.

When she passed, the respite from performing these duties was short-lived, because his father then became ill. Both situations ended the same way: Both loved ones were confined to their beds and unable to walk or eat until the very end, when their hearts gave out.

I’m certain that Aubrey’s experience growing up isn’t unique to him. Families that carry this familial type of strain probably have similar stories to tell. Now that he faces a similar situation as his predecessors, it can be easy for Aubrey to focus only on a fatalistic outcome rather than a positive one.

Hence, when healthcare practitioners and treatment researchers give him a voice to speak about the situation and possible solutions, it not only silences his inner cynic, but also gives him hope to fight for a better tomorrow. And as carers, when we receive validation from those around us, it provides us the reassurance we need to keep holding on for our loved ones.

Holocaust survivor Elie Wiesel once said, “For the survivor who chooses to testify, it is clear: his duty is to bear witness for the dead and for the living. He has no right to deprive future generations of a past that belongs to our collective memory. To forget would be not only dangerous but offensive; to forget the dead would be akin to killing them a second time.”

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Note: FAP News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of FAP News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to familial amyloid polyneuropathy.