2:35pm June 22, 2014

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The almost 30 million Americans like me who have rare diseases often live beyond the reach of popular charity events and other cause-related marketing events. In this context, awareness is certainly an important level-setting goal. However for so many more of us who live with chronic disease, more immediate needs like access to appropriate, ongoing health care have greater impact on daily life.

Of course I want a cure, but I also want to make sure my daily chest physiotherapy, a key component in prevention of infection and disease progression, is covered by insurance. I would love to live without PCD someday, but right now, my focus is on living the most productive life as mother, spouse, writer, and teacher that I can. To do that, I need the specialists, physical therapists, medications, and other medical interventions that keep me as well as possible.

Don’t misunderstand me. Raising money for cures is incredibly important, and the sense of community, hope, and optimism these charity events and assorted awareness activities often foster are indeed valuable. A more robust support system and more effective treatments are just some of the benefits they have made possible. What we also need is better patient understanding of how research funding is allocated and prioritized, more focused attention on the causes and true prevention of disease, including the prevention of disease progression, and consistent access to treatment.

One patient I spoke to with an autoimmune disease that affects the gastrointestinal tract gave the example of a charity race for his condition that he couldn’t participate in because there weren’t enough port-a-potties along the racecourse. Breast cancer advocates point to the problems of marketing a perfume to benefit research for a cure, when patients undergoing chemotherapy for cancer treatment are sensitive to smells, and fragrances often contain chemicals considered to be carcinogens.

…Focusing on curing or beating illnesses can’t overshadow attending to the ongoing needs and realities of patients already living with them.

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-Laurie Edwards http://www.psychologytoday.com/blog/in-the-kingdom-the-sick/201306/the-risks-slacktivism-when-it-comes-chronic-illness

A friendly reminder that cure-focused narratives are unhelpful even for those who actually have diseases.  It may be worse for autistic people, who don’t even have a disease or necessarily want a cure, but it doesn’t help anyone.

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