Health System Barriers, Treatment Disparities Prolong gMG Diagnosis

Improving interactions between patients with generalized myasthenia gravis (gMG) and the health care systems they encounter should be a priority in US health care, according to new findings. These findings from Project ASPIRE (eliminAte diSparities and Promote equIty in Rare disease) shine a spotlight on the barriers patients with gMG continue to encounter, from symptom onset to diagnosis to receiving care.

The findings were published in a recent issue of the Journal of Neurological Sciences.¹ Patients with rare diseases typically endure a difficult journey before they are given an accurate diagnosis. They often face years of uncertainty as they navigate a confusing health care system that can misdiagnose them and may force them to visit multiple health care providers (HCPs). The data in this study were gathered from Project ASPIRE through quantitative surveys and qualitative interviews conducted between January and May 2023, with 3 principal goals: identify diagnosis and health care access barriers for patients with rare neuroinflammatory diseases, gauge potential treatment disparities, and mitigate key barriers to timely diagnosis.

Patients were recruited through advocacy groups, and clinicians were recruited through a health equity advisory board and from an academic medical center. Most patients were female (62.0%) and from the Northeast (40.0%); their mean (SD) age was 55.1 (16.0) years; 23.9% reported a racial/ethnic minority (REM); more than half (50.7%) had Medicare, Medicaid, or another form of insurance; 18.3% had an annual income below $20,000; and 64.8% were unemployed. Among the 12 clinicians interviewed, 11 had a doctor of medicine degree and 1 was a nurse practitioner with specialized experience in neurology.

Project ASPIRE data were presented in April at the American Academy of Neurology annual meeting by investigator Marla Black Morgan, MD. At that time, in an interview with The American Journal of Managed Care^®, Morgan said, “I think that it is important that we identify these differences, because in the big picture, I think that if we can say, ‘Hey, this may be a reason why patients have a delay in diagnosis, that may be a reason why patients are sicker when we see them, [or] that may be a reason why they don't respond as expected to a particular therapy,’ I think that this early information can help down the line in terms of patients, our therapies that we choose, and their response to those therapies.”²

These newest results show a mean (SD) total diagnostic journey of 26.3 (43.3) months and that the time from seeking care to diagnosis was 31.4% longer than that between symptom onset and seeking care: 15.5 (36.7) months vs 11.8 (22.5) months. Drilling down, the duration from symptom onset to seeking care was similar between White patients (reference group) and REM patients, at 11.8 (22.9) and 11.7 (21.8) months, respectively; however, from seeking care to diagnosis was longer in the latter, at 18.6 (25.4) vs 14.5 (39.6) months. Differences were also evident in mean total HCPs seen before correct gMG diagnosis between White and REM patients (4.8 [2.9] vs 4.1 [3.0], respectively) and between female and male patients (4.9 [3.5] vs 3.0 [1.1], respectively).

The most common reasons given for diagnostic delay, per the patients, were HCPs mistaking gMG symptoms as female health issues (15.5%), difficulty accessing specialty care (14.1%), and lack of gMG knowledge among HCPs. Three-quarters of patients overall said their diagnosis journey was very stressful, and when comparing REM patients with White patients, there was a clear difference in reports of stress: 64.7% vs 35.2%, respectively. Similar trends were seen in the findings on having a difficult or very difficult patient journey (78.6% vs 52.0%), a diagnostic journey longer than 6 months (78.6% vs 52.0%), and higher mean depression (18.0 [6.5] vs 11.2 [9.0]), anxiety (16.4 [9.4] vs 10.0 [8.8]), and stress (15.8 [8.0] vs 11.6 [11.2]) scores.

When asked what they thought was behind the delays, the patients cited lack of communication, knowledge, and coordination among HCPs; disbelief of symptoms (REM and female patients, specifically); and being perceived as seeking drugs. They also reported being misdiagnosed by neurologists, emergency department physicians, and ear/nose/throat specialists. The clinicians cited the long wait times for access to specialist appointments because of insufficient neurologists or primary care doctors who don’t make timely referrals, lack of gMG knowledge, insufficient insurance coverage, patient daily obligations, and social determinants.

There are limitations on these results. The long recall period when answering questions could have led to recall bias, there was no control group, statistical testing was not performed among subgroups, associations between type of symptom and diagnostic delay were not measured, and the study sample may not fully represent patients with gMG in the US, due to the surveys being distributed via the internet—so that patients lacking access or older patients unfamiliar with the internet may not have been included.

Still, the authors look forward to making progress, noting their results on disparate patient experiences.

“Results from Project ASPIRE highlighted that patients with gMG experienced long and complex diagnostic journeys and had several barriers to timely diagnosis based on their race, ethnicity, and gender,” the authors concluded. “Our findings suggest that solutions for REM and other patients with long journeys should prioritize interactions between the health care system and patients rather than educating patients to seek care sooner since the time from seeking care to diagnosis was longer than from symptom onset to seeking care.”

References

1. Jiang N, Morgan MB, Everett W, et al. Patient journey in generalized myasthenia gravis in the United States: barriers to timely diagnosis and proposed solutions. J Neurol Sci. 2025;15:479:125668. doi:10.1016/j.jns.2025.125668
2. Shaw M, Morgan MB. Addressing myasthenia gravis diagnostic delays and access barriers: Marla Black Morgan, MD. AJMC^®. June 13, 2025. Accessed December 21, 2025. https://www.ajmc.com/view/addressing-myasthenia-gravis-diagnostic-delays-and-access-barriers-marla-black-morgan-md