Pharma companies are trying to be patient centric but it’s not their fault they can’t fully achieve it, a US-based e-patient and research advocate has told PharmaTimes Digital. 

Jack Whelan, who was diagnosed in 2007 with an active Waldenstrom’s Macroglobulinemia, an incurable rare lymphoplasmacytic lymphoma, said he was noticing a particularly strong interest in connecting with patients over the past few years. 

“There is a very strong drive, a desire to engage patients directly, to understand their disease and personal experiences to ultimately develop safe and effective therapeutics.” 

But there was one main issue that prevented achieving true patient centricity, said Whelan, who will be speaking at the eyeforpharma Barcelona conference on 24-26 March

“Many regulations stand in the way of much needed progress.”

He noted legal departments that “unwittingly block direct communications with patients to avoid legal entanglements or bad press”. 

“I believe we’ve gone much too far with patient privacy regulations. It’s important we secure patient privacy but we’re missing so many opportunities to collect and disseminate valuable research data from specific patient populations.” 

He also said the distribution model where therapeutics were delivered through an intermediary, such as a healthcare provider, didn’t facilitate communications between patients and pharma. 

But it wasn’t all doom and gloom – Whelan believed pharma could overcome these barriers. “Get more serious about engaging patients throughout your company. When legal says no, push back, make your case and strongly defend your need for valuable patient information.” 

He suggested inviting patients into the company offices, involving patients earlier in clinical trials, understand patients’ medicine taking behaviours, and pay patients fairly for their time.

“You can learn that my patient’s voice is perhaps one of the most powerful tools you can use in research advocacy. Pharma needs patients to help eliminate out-of-date regulations – we need parity insurance coverage whether a therapeutic is administered in a healthcare facility or taken at home; we need to eliminate step therapy (fail first therapy) that requires patients to take lower cost, perhaps less effective medications; we need to clarify emerging questions about biosimilars, never letting cost be the deciding factor but leave the decision between a physician and patient; we need to update drug formularies more frequently; we need to improve the pace at which drugs are approved; and we need to pay for much needed companion diagnostics.”

He added: “Most of us see the commodity-grade marketing-centric pharmaceutical industry, but there is much to admire about the many thousands of people who work diligently every day to bring us the many complex, safe and effective therapeutics. There are many patients like me who don’t get the opportunity to say thanks and remind you about the nobility of your work.” 

Jack Whelan will be speaking at the eyeforpharma Barcelona conference on 24-26 March, which will discuss patient engagement, multichannel marketing, sales excellence and key account management. For more information, go to: