# The Moments That Matter After a gMG Flare **PatientSight · Flyway Health · gMG** Claims and patient survey data point to two moments after a flare that shape whether treatment changes. By Dave Muggler, PatientSight, and Andre Biehl, Flyway Health _Patient survey of 102 adults with generalized MG · US medical and pharmacy claims for about 68,000 confirmed gMG patients · 2024 to 2026_ Generalized myasthenia gravis (gMG) is a chronic autoimmune disease that causes muscle weakness that can come and go, from drooping eyelids and double vision to trouble swallowing and, at its most serious, trouble breathing. Getting to a diagnosis often takes time: more than half of the patients we surveyed saw three or more doctors first. Over the years, the journey can involve acute episodes and several treatments, and newer targeted therapies have given patients and neurologists more options for longer-term control. We followed patients through the weeks after a flare, an acute exacerbation that brings them to the hospital or ER. A flare is a natural point to review treatment, and it is when a patient most needs a specialist with the right expertise. We combined a patient survey with US claims because each answers different questions. Claims show how often something happens, and to whom. The survey helps explain why. ## The short version | Figure | Finding | Source | |---|---|---| | 6x | A flare makes a targeted therapy start about six times more likely. Yet 3 in 4 patients have no change six months later. | Claims, flare vs. no-flare patients | | 1 in 4 | flare patients see a neurologist in the month after discharge, though neurology is involved in about 3 in 4 hospital stays. Those who are seen start a targeted therapy about twice as often. | Claims, flare patients, 2025 | | 6 in 10 | patients named a therapy they planned to try but never started. Most often, the doctor’s call or access got in the way. | Patient survey, 102 adults | **A flare is the moment treatment is most likely to change, and usually it doesn’t.** About 1 in 10 people with gMG have a flare each year that brings them to the hospital or ER. A flare makes a targeted therapy start about six times more likely, yet six months later about 3 in 4 patients have had no change in maintenance treatment, and the start rate held steady through 2025 as new therapies arrived. Flares often come back, and the second one usually passes without a change too. **What tips it is the neurologist.** In the hospital, neurology is usually involved, but only about 1 in 4 patients see a neurologist in the month after discharge, and those who do start a targeted therapy about twice as often. Which neurologist matters too: what predicted a start wasn’t how many MG patients a neurologist sees, but how they treat their other patients. **Patients are often ready; the path stalls.** Many patients aren’t satisfied with their treatment, and most on conventional therapy say they’re likely to raise switching. But 6 in 10 named a therapy they planned to try and never started, held back by their doctor’s judgment, access hurdles, or worries about side effects. > **Two moments shape what happens after a flare: whether a neurologist is there to follow up, and whether treatment options come up, and get through, when they are.** ## 1 · The flare: After a flare, treatment usually stays the same About 1 in 10 people with confirmed gMG have a flare each year that brings them to the hospital or ER, and we followed these patients for six months. **Among those not already on a targeted therapy, about 3 in 4 had no new or changed maintenance treatment.** Most of the rest started or changed a conventional drug, and fewer than 1 in 10 started a targeted therapy. **Exhibit 1. Six months after a flare, 3 in 4 patients have no change in maintenance treatment** | Six months after a flare | Share | |---|---| | No change in maintenance treatment | 75.0% | | New or changed conventional drug | 12.8% | | Started regular IVIG | 4.6% | | Started a targeted therapy | 7.6% | _Patients with confirmed gMG not already on a targeted therapy, flares in 2024 and 2025. Deaths and hospice discharges excluded; includes only patients we could follow for six months. “No change” means no new or changed maintenance treatment seen in claims. Started regular IVIG: IVIG in three or more of the following six months._ That doesn’t mean the flare goes unnoticed. Compared with similar patients without a recent flare, a flare made a targeted therapy start about six times more likely (about 8% vs. about 1%). It is the moment treatment is most likely to change, and most of the time it still doesn’t. Not every flare calls for a new maintenance treatment. For a recently diagnosed patient, steroids or an oral immunosuppressant are often the first step. Payers often require trying them before a targeted therapy, and oral immunosuppressants can take months to work. **Still, the share starting a targeted therapy after a flare held at 7–8% in 2024 and 2025, a period when several new therapies launched.** Early 2026 data are too incomplete to say whether this is changing. | Targeted starts after a flare | Share | |---|---| | 2024 | 7.8% | | 2025 | 7.4% | _Early 2026 too incomplete to call._ **Flares often come back.** Within a year, more than 1 in 4 flare patients were back in the hospital or ER for MG. Among those whose treatment hadn’t changed after the first flare, about 8 in 10 still had no change after the second. Flares often follow a recent prednisone start: in the three months before a flare, patients were about twice as likely as others to have started it, typically about five weeks earlier. That can reflect symptoms already worsening, an infection being treated, or the short-term worsening that sometimes follows starting steroids. When change does come, it is slow. The typical start came about three and a half months after the flare, and 3 in 10 came 6 to 12 months later. Some patients may start sooner on free drug from manufacturer programs, which claims don’t show. > **Exacerbations are common and often repeat, but treatment doesn’t usually change.** ## 2 · The follow-up: Many flare patients don’t appear to have a neurologist managing their care MG is ideally managed by a neurologist or neuromuscular specialist experienced with MG. In claims, 46% of flare patients had no neurology visit in the year before their flare, compared with 30% of patients starting a targeted therapy, a group that usually sees a neurologist. After adjusting for visits claims don’t capture,\* **roughly 1 in 5 to 1 in 4 flare patients likely had no neurologist in the year before their flare.** _\* Claims don’t capture every visit. Among patients who usually see a neurologist, about 7 in 10 had a visit visible in a given year, so we adjust for visits claims miss._ **Exhibit 2. Flare patients were less likely to have a neurologist visible in claims** | Share with no outpatient neurology visit in a year | Share | |---|---| | Flare patients, year before the flare | 46% | | Patients starting a targeted therapy | 30% | | MS patients on a disease-modifying drug | 34% | _Claims, flare patients, 2024–2025. Patients starting a targeted therapy and MS patients on a disease-modifying drug usually see a neurologist, so their bars show roughly how many visits claims miss. Fully covered patients: 42%, 22%, and 17%._ **These patients weren’t milder or older.** Their flares were just as serious, and their age, gender, and payer mix were nearly the same. Many were recently diagnosed, and for them MG seems to have come to light in the hospital, so not having a neurologist beforehand isn’t surprising. What happens after discharge is the more telling measure. > “I was diagnosed during a near crisis in hospital. Follow up medical was my greatest challenge.” > — Patient on an IV biologic ### The gap opens after discharge In the hospital, neurology is usually involved: about 3 in 4 MG stays showed a neurologist in claims, similar to stroke and Guillain-Barré admissions at the same hospitals. After discharge, the picture changes. Only about 1 in 4 patients not already on a targeted therapy saw a neurologist within a month. Many are seen later, but those seen in the first month were about twice as likely to start a targeted therapy. > **In the hospital, neurology is usually there. Over time, many patients don’t have a neurologist managing their care.** ## 3 · The visit: Who sees the patient after a flare, and when, shapes what happens **Patients seen by a neurologist within 30 days of a flare started a targeted therapy at about twice the rate of those who weren’t: about 11% versus 5%.** The difference held across age groups and payers, in rural and urban patients, in recently diagnosed and established patients, and in fully covered patients. It held among patients with similarly serious flares, and even when comparing patients of the same neurologist. **Which neurologist matters, too, and not in the way volume-based targeting assumes.** How many MG patients a neurologist sees, and whether they focus on neuromuscular disease, made little difference to what happened after a flare. What did predict it was how the neurologist treats their other MG patients: patients of neurologists who use targeted therapies more widely were nearly three times as likely to start one after a flare (about 19% vs. 7%). The gap held among patients with similarly serious flares and similar treatment histories. Neurologists who rarely use targeted therapies also use IVIG and immunosuppressants for a smaller share of their MG patients and are less likely to appear in public industry-payment records from MG manufacturers. They appear to escalate treatment less across the board and to have less contact with the companies making newer therapies. That fits what patients told us: when a planned therapy never started, the doctor’s judgment was among the most common reasons. > Even among patients seen within a month, close to 9 in 10 don’t start a targeted therapy. The survey points to why: change often has to start with the patient, and plans often stall. **Exhibit 3. Patients seen within a month start a targeted therapy at about twice the rate** | Flare patients in 2025, not on a targeted therapy | Share | Start a targeted therapy | |---|---|---| | Seen by a neurologist within a month | About 1 in 4 | about 11% | | Not seen within a month | About 3 in 4 | about 5% | _Claims, flare patients, 2025. Flare patients in 2025 we could follow for six months, not already on a targeted therapy and not started within 30 days. Starts counted in days 31 to 180._ Even so, most patients seen within a month stay on their current treatment: close to 9 in 10 don’t start a targeted therapy. Claims can’t show why. The survey helps explain it (Section 5). > **Treatment changes after a flare track closely with having a neurologist managing the patient’s care.** ## 4 · IVIG: When outpatient IVIG starts, it often continues IVIG is often used to stabilize patients when symptoms worsen. **About 6 in 10 new outpatient IVIG courses continue for three or more of the first six months**, and about 3 in 10 patients are still receiving IVIG up to two years later. Over two years, about 1 in 6 patients on ongoing IVIG start a targeted therapy. Among fully covered patients, about a third of new IVIG courses sit alongside an oral immunosuppressant, consistent with a bridge while that drug takes effect. Another third come with a steroid. For the remaining third, IVIG is the only maintenance treatment in the record. > “I would like improved symptom management and to not have to rely on lengthy infusions of IVIG every 4 weeks.” > — Patient on an oral immunosuppressant and IVIG ## 5 · The patient’s side: Patients are ready to try something new. Their plans often stall. The survey asked patients about their treatment, their satisfaction, and their plans. These are self-reported answers from an engaged patient panel, so we read them as direction rather than precise rates. **Many patients aren’t satisfied, and they’re willing to act.** Patients on conventional therapies rated their treatment 3.4 out of 5 on average, about neutral, and those who weren’t satisfied most often said it doesn’t meet their expectations. About 6 in 10 patients on conventional therapy or IVIG said they’re likely to talk to their doctor about switching in the next six months. Change often starts with the patient. Among patients on a newer biologic, more than half said they raised it with their doctor first, and most said their doctor recommended it. **But plans often stall.** About 6 in 10 patients named a therapy they had planned to try but never started, most often a targeted therapy. The most common reasons were that their doctor didn’t think it was right for them, or that insurance, cost, or prior authorization got in the way. Others changed their minds or worried about side effects. Claims show the same friction. When a first pharmacy claim for a self-injected targeted therapy was rejected, about half of patients had no targeted therapy six months later, though some may have received free drug through manufacturer programs, which claims don’t show. Medicaid and dual-eligible patients started a targeted therapy after a flare less often than patients with Medicare or commercial coverage (about 6% vs. about 9%). When patients switch, it’s for control: 33 of 52 who had switched said better symptom control was the main reason. Claims point the same way. Patients already on a targeted therapy who had a flare switched within six months about twice as often as those who didn’t (12% vs. 5%), and switches to a different drug class were more than twice as likely as formulation changes to follow a flare or a new IVIG course. | Patient survey, 102 adults | | |---|---| | 57% | raised it first (n=60) | | 6 in 10 | planned a therapy they never started (n=102) | | 59% | likely to raise switching (conventional or IVIG, n=39) | > “I have an old school doctor who doesn’t talk about new things.” > — Patient on older oral medicines > “I’d love to see patients have an easier time getting in touch with a doctor or nurse during an uptick of symptoms.” > — Patient on an IV biologic > “I’m afraid of side effects.” > — Patient who planned a therapy but never started it > **Patients are often ready to change. Too often, the path to a new therapy stalls.** ## 6 · Where starts come from: Conventional therapy is the largest source of targeted therapy starts We looked at targeted therapy starts in 2025 among fully covered patients with confirmed gMG, whose claims show their full treatment history. About two-thirds were patients new to targeted therapy. **The largest single source was conventional therapy (34%), followed by ongoing IVIG (18%).** Switches within targeted therapies made up 24%, and formulation changes of the same drug, such as moving from IV to self-injection, another 11%. And 30% of first starts came within six months of a hospital or ER flare or a new IVIG course. So flares aren’t where most starts happen; they’re where a start is most likely. **Exhibit 4. About two-thirds of targeted therapy starts were patients new to targeted therapy, 2025** | Source of start | Share | Group | |---|---|---| | From conventional therapy | 34% | New to targeted therapy: 65% | | From ongoing IVIG | 18% | New to targeted therapy: 65% | | No prior treatment seen in claims | 13% | New to targeted therapy: 65% | | Switch to a different class | 18% | Switches within targeted therapies: 24% | | Switch within the same class | 6% | Switches within targeted therapies: 24% | | Formulation change, same drug | 11% | Formulation change: 11% | _Fully covered patients with confirmed gMG. Across all patients in 2025 the pattern is similar, but “no prior treatment seen in claims” rises to 29%, mostly because some patients’ prescriptions aren’t visible. Off-label rituximab is reported separately._ > **The biggest pool of future starts is patients on conventional therapy, the same patients who rate their treatment about neutral and are most likely to raise switching.** ### What each source showed that the other couldn’t **Claims showed the pattern:** a flare is the moment change is most likely, yet most of the time nothing changes, even after a second flare. Whether a neurologist is involved, and which one, tracks closely with whether it does. **The survey showed the people behind it:** patients who aren’t satisfied, who are ready to talk about switching, and who often had a therapy planned that never started. **Each kept the other honest.** The survey panel was younger, more often female, and far more often on a targeted therapy than patients in claims, so we weighted survey results to the treatment mix in claims. Claims show what happened but not why; the survey shows why but not how often. ## What each team can take from this - **Hospital-facing teams:** neurology is usually involved during the stay; the gap opens after discharge. Disease education on leaving the hospital with neurology follow-up in place fits here, especially for patients diagnosed during the stay. - **Field teams:** a flare is a natural point to review the treatment plan, and patients seen within a month are about twice as likely to start a targeted therapy. A neurologist’s habits with their other MG patients predict what happens after a flare better than their MG volume does, so neurologists who rarely use these therapies and whose patients are hospitalized for MG are the clearest place to focus. They tend to escalate treatment less overall, so understanding how they approach MG care is the starting point. - **Patient engagement and advocacy:** patients are often ready. Many expect to raise switching, and most patients on a targeted therapy raised it themselves. The moments to reach them are right after a hospital stay, soon after diagnosis, and when IVIG becomes ongoing. Physician-finder tools that point to MG-experienced neurologists fit here. - **Market access:** after a rejected first pharmacy claim, about half of patients had no targeted therapy six months later, and Medicaid patients started less often after a flare. Smoothing the path from prescription to first dose fits here. - **Brand and forecasting:** a flare makes a start about six times more likely, but most flares pass without one, and the starts that do come take months. The post-flare start rate held at 7–8% through 2025, and the 2025 Medicare Part D out-of-pocket cap didn’t visibly move it for Medicare patients, likely because most post-flare starts are drugs given in a clinic and covered under Part B. That’s a baseline worth tracking as newer therapies take hold. > **Both moments come back to the same thing: whether patients have a neurologist who follows them after a flare, and whether the path to a new treatment holds when they’re ready.** ### How we did this **Survey.** 102 US adults with generalized MG, diagnosed at least a year earlier and on treatment, recruited through a rare-disease patient panel in March and April 2026. The panel was younger than patients in claims (30% vs. 66% aged 65 or older), more often female (75% vs. 50%), and more often on a targeted therapy (61% vs. 21%, since the survey required patients to be on treatment). We also weighted key survey results to the treatment mix in claims. **Claims.** Claims only, with no electronic health record data: US medical and pharmacy claims from open and closed sources, January 2024 to September 2026, with history from 2021. Diagnoses come from medical claims. Confirmed gMG: at least two G70.00 or G70.01 claims 30 or more days apart, plus a pyridostigmine fill, an MG antibody test, or a neurology visit (about 68,000 patients). A flare is a hospital or ER visit with MG as the main diagnosis, G70.01, or respiratory failure with MG. Patients who died or went to hospice were excluded, and flare analyses include only patients we could follow for six months. A neurology visit is an office or telehealth visit with a neurologist or neurology subspecialist, a clinician in a neurology practice (including nurse practitioners and physician assistants), or a provider whose billing patterns indicate neurology. Claims miss some neurology visits. Even among patients who usually see a neurologist (patients starting a targeted therapy, and MS patients on a disease-modifying drug), about 7 in 10 had one visible in a given year (about 8 in 10 among fully covered patients), and we adjust for this where we estimate how many patients lack a neurologist. The comparison group without a flare is patients with confirmed gMG and no recent flare, IVIG course, or targeted therapy, followed for six months from a random date. A new IVIG course is outpatient IVIG or plasma exchange with none in the prior 90 days; patients with CIDP or immunodeficiency diagnoses were excluded from the flare and IVIG results. Targeted therapy: eculizumab and its biosimilars, ravulizumab, zilucoplan, efgartigimod, rozanolixizumab, nipocalimab, and inebilizumab; off-label rituximab is reported separately. **Checks.** Results were repeated in fully covered patients and in random halves of the data, and compared within the same neurologist. Refills of self-injected drugs arrived on the expected schedule for 75% to nearly 100% of patients, consistent with complete specialty pharmacy capture. Survey and claims were analyzed together at an aggregate level; no individual patients were linked. Some figures come from separate analyses with slightly different definitions, and results shift somewhat across sensitivity checks, such as different ways of defining a visit or a follow-up window, so we report rounded, directional figures. **Limits.** These are associations, not causes. Antibody status isn’t visible in claims, and ocular and generalized MG can’t be fully separated; patients with pyridostigmine only and no sign of generalized disease were set aside where it matters. Treatment given during a hospital stay, prior authorization denials for infused drugs, and free drug provided by manufacturers aren’t visible. Compared with claims, survey sample sizes are smaller, and respondents come from an engaged patient panel. Figures describe this dataset, not national projections. This research was conducted independently by PatientSight and Flyway Health. No manufacturer funded or reviewed it. --- **PatientSight** — PatientSight is a purpose-built primary research company delivering insights from patients and caregivers in rare and specialty diseases. dmuggler@patientsightsurvey.com · patientsightsurvey.com **Flyway Health** — Flyway Health produces independent, claims-based research on real-world treatment patterns, formulary impacts, and therapy adherence. andre@flywayhealth.com · flywayhealth.com