“Welcome to hell”! Empowered patients’ frustration

KEY TAKEAWAY: Can a drug company, or health insurer really understand what it’s like to enter a living nightmare of trying to get treatment?  Until they do feel what it’s like to try and get treatment our health care system is going to let a lot of people fall through the cracks of the system at a time when we need to pay attention to individuals.

Beth is a woman with progressive MS who was doing well using Biogen’s Tysabri via an infusion every month.  Her doctor fought with insurers, at one point in time threatening to hold them accountable for the patients’ health to get her on therapy, which worked very well, ten Beth made a mistake she changed jobs and insurers.

Beth relocated for her new job and, after seeing a neurologist, got an Rx for Tysabri which started her nightmare.  First the paperwork from her doctor to the infusion center disappeared, then her insurance company sent a mound of forms over to her doctor’s office and in addition Biogen got into the middle to help with reimbursement.  Since this time Beth’s MS has symptoms have gotten worse to the point that she started crying as the demands of her new job took its toll.

Welcome to modern healthcare!

Pharma companies need to understand the complicated and difficult barriers that prevent people from getting well with the therapy of THEIR choice.  How many patients are failing to navigate the barriers and thus dropping off the radar should be of paramount importance to everyone working in healthcare, but our system is designed to treat the masses, not the individual.

I have said, many times, that we need patient coordinators who can help patients get the treatments THEY want before their health declines.  For example, people with type 2 diabetes, or who are prediabetic, should receive counseling on diet and nutrition as well as exercise.  If asking for and receiving a certain medication will make them more compliant than it should be prescribed without insurers burying doctors in paperwork.

Pharma marketers also need to understand what it’s like to try and get on therapy and do everything they can to ensure the line between awareness and Rx is as short as possible.  They can’t afford to allow a single person to fall off the cliff because it means we all failed the system.