Patients go Unheard – Until It’s Too Late

Informed patients will choose to make a trade-off between treatment and a normal life if the treatment proves too invasive, according to Jason Loo, 22 year old cancer survivor.

Loo and Teenage Cancer Trust advisor, Kay Fisher, addressed the eyeforpharma Barcelona conference today on behalf of the charity and other young cancer sufferers and asked the industry to engage the patient from early drug development stages. The lack of patient interaction, which is a well-known issue within the healthcare industry, can lead to unforeseen side effects which patients see as intruding on their common way of life.

“I’ve spoken to many patients who’ve made just those trade-offs. I met a lady who has a condition called glaucoma, quite serious; she could become blind if she doesn’t take her eye drops. She knows this, her Dr knows this but she doesn’t take the treatment because it makes her eyes go red and she doesn’t want to go out in the morning looking like she’s been down the pub,” Kay said.

Loo, 22 year old University Student added, “What I realised is that in the healthcare industry everything seems to be statistics, you might see chemo drugs as a biological process but to me, I see them as something that prevents me from hanging around with my friends if I want to. I know they help treat the illness but that’s the trade-off. There’s clearly a rift.”

“In my opinion times have changed, we’re living in a different world now. Patients are better informed.”

The rise of the internet is a massive contributing factor to the rise in patient share of voice and the incremental successes patients have experience in having that voice heard over recent years. It’s very easy to forget that until the mid-1990’s it was impossible to communicate with large groups of people over vast geographic areas without incurring huge expense. Today it’s as easy an opening a free email account.

While there are some small examples of patient/pharma partnerships, many patients, including Jason, feel we’ve not even scratched the surface of what it achievable, and Kay Fisher believes that this desire to take control could be leading to many of the non-adherence cases we see today, “These decisions are emotional, they’re not rational or logical and they’re rooted in a need to take control of our condition.”