Table 2.

Patient authors’ experiences of NEDA and MS management in the clinic

NEDA	Patient perspectives
Value	“Newly diagnosed patients… often seem to find a ‘ray of hope’ when NEDA is mentioned and explained and… it lends empowerment to them staying the course with a treatment regimen”
	“Those of us who have stabilized and are living with NEDA are just plain grateful”
	“I find that often [older/experienced patients] have… become resigned to disease progression and may have chosen to forgo further use of DMTs due to side effects or reluctance of a non-MS provider to be assertive in guiding them through the decision-making process”
Perception	NEDA has been brought up and discussed [in social media support groups for PLwMS] on several occasions…. Individuals have expressed the idea that NEDA is as close to a cure as they will likely see during their lifetime”
	“[The patient perception of NEDA is] confusion. Those told that their MRI shows ‘no evidence of disease activity’ cannot understand the disconnect between the test result and the clinical status”
	“The problem [confusion about NEDA] is potentially aggravated if their medical provider is not an MS specialty neurologist (such as a general neurologist or… a primary care physician)”
Barriers	“Cost is huge! Many individuals are underinsured and cannot afford the copays…. These individuals often rely on Medicare as their health insurance and all of the self-administered DMTs have HUGE copays of $2000–3000 each month”
	“The foundations that help with copays may say the individual has been approved for a year of copay assistance when… it may be 2 or 3 months before the Medicare payout year resets and they are dropped again. Drug companies have not found a way to support these patients”
	“Potential for payer denial and coverage…. Use of NEDA as a reason for treatment denial is a potential, real concern”
	“Misuse of NEDA being interpreted as being equivalent to ‘a cure’ by insurers may delay needed ongoing intervention to forestall or prevent disease progression”
Optimization	“The primary focus/starting point should not be the MRI status but the clinical patient symptoms with MRI results (if they are needed at all) being based on patient symptoms and clinical evaluation”
	“We need to address common sense things like hydration, sleep hygiene, elimination of distractions, diet, and exercise before moving on to costly testing”

DMT disease-modifying therapy, MRI magnetic resonance imaging, MS multiple sclerosis, NEDA no evidence of disease activity, PLwMS people living with multiple sclerosis