Collaboration Between Patient Advocates and the Scientific Community Brings Me Hope

By the time this column is published, I will be halfway across the world, traveling to Heidelberg, Germany, for the International Symposium on Amyloidosis. It will be the first time I attend an international amyloidosis conference as a patient advocate leader without my husband alongside me. Sadly, Aubrey passed away on May 22 from hereditary ATTR amyloidosis.

Back in 2019, we both visited Berlin to attend the European Amyloidosis Alliance meeting. New to the advocacy arena at the time, we didn’t know what to expect, but we were both resolute in connecting with others from around the world who all had ATTR amyloidosis in common. For three days, we met many inspiring people and got to know those in the medical and pharmaceutical industries.

It was eye-opening to learn how passionate those in the healthcare and research industries are about finding a solution to properly support and treat people diagnosed with this condition. Aubrey found hope that a solution to his illness was possible.

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The opportunity to meet face to face with various representatives of the pharmaceutical industry was priceless. Both the medical and pharmaceutical research sectors have come a long way since the early days. The evolution from physician-centric medicine to patient-centric medicine could not have happened soon enough, particularly for patients with rare disorders like amyloidosis.

In the book “The Medical Interview,” Dr. Mack Lipkin wrote that a patient-centered view is one that “approaches the patient as a unique human being with his own story to tell, promotes trust and confidence, clarifies and characterizes the patient’s symptoms and concerns, generates and tests many hypotheses that may include biological and psychosocial dimensions of illness, and creates the basis for an ongoing relationship.”

Through my ongoing rapport with those involved in clinical trials for investigative treatments for amyloidosis, I see a genuine desire to allow patient and caregiver voices into the process. I see a move away from a “laboratory” approach toward an emphasis on identifying the needs of the sufferers. Those with chronic illnesses and their family members are now increasingly the protagonists in the process of finding better treatments.

That’s why this trip is important to me. Although I’ll be traveling solo, I know I will see familiar faces, and I look forward to catching up with people I met three years ago. We will be coming together as one, and unlike in 2019, patient advocates are invited to attend a scientific symposium organized by the International Society of Amyloidosis. The fact that patient advocates are involved provides great hope for the future of treatment and supportive care.

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.