A painful path: How COVID-19 has delayed care for one chronic migraine patient

On Aug. 15, 2000, Kayte Newman’s chronic migraine was born kicking and screaming.

“It was like someone hit me around the back of the head with a baseball bat,” Newman says. “It was so severe and brutal, and it didn’t go.”

Just after her chronic migraine’s 20th birthday, Newman is facing an unfolding battle alongside the rest of the world: the COVID-19 pandemic. But unlike people who don’t experience chronic migraine, a debilitating neurological disease comprising 15 or more headache days monthly,¹ Newman has been forced to cope with the unthinkable – a delay in care.

Newman receives chronic migraine treatment every three months. Around three to four weeks before her treatment was due in June, she received a call from her hospital with devastating news: the facility was stopping all appointments.

Newman says she understood why this happened – resource conservation and virus-prevention spread were necessary considerations during a global pandemic. But accepting that she would not have access to her treatment, an essential component to managing her chronic migraine, for the foreseeable future was more difficult to accept.

Born from necessity, a sliver of hope surfaced through her disappointment. Perhaps she no longer needed treatment, she thought. Her migraine, which appeared when she was 18 and never quite went away, was just a mounting pressure ebbing and flowing after years of management; maybe she would be all right with no treatment for a while.

But then the agony returned. “When I felt the pain, it was like, ‘Oh, I’d forgotten this old friend,’” Newman says.

Although Newman says she hasn’t been affected by the pandemic as much as others might have been given her ability to work freelance from home, that headache following her first missed treatment in years marked the moment she realized COVID-19 had the potential to impact her life, too.
 

For Newman, the pandemic has highlighted a crucial fact regarding her chronic migraine: receiving consistent treatment is critical. She knew her scheduled treatment regimen lessened her pain and made her episodes less frequent, but it wasn’t until her care changed that she realized it.

Andrew Blumenfeld, M.D., a neurologist based in California, treats chronic migraine patients like Newman and has witnessed the importance of consistent care – especially during the pandemic. However, he has seen patients delaying treatment for a variety of pandemic-related reasons, including hesitation to pursue in-person appointments. For those patients, he says it’s about reestablishing their regimen. “We’re trying to get them back to where they were before,” he says.
 

Despite the importance of continuing care for chronic migraine patients, some health care providers across the globe – such as Newman’s clinicians – had no choice but to cease or reduce care options.

In the spring, U.K. headache nurse Susie Lagrata was ordered to stop all in-person appointments and non-urgent and elective admissions, including those at procedure clinics, where her chronic migraine patients are treated.

In addition to hearing from patients who were struggling through missed treatments, Lagrata saw service-related challenges emerge for her and her colleagues. Postponing appointments produced an extreme backlog, and new safety requirements at her office – such as implementing extra screenings for COVID-19 symptoms in patients and staff as well as deep-cleaning office equipment – increased her team’s workload.

While Lagrata and other health care providers faced issues spurred by stopping and restarting services, other practitioners were able to continue providing in-person care to chronic migraine patients – but consequently faced other challenges.

After internal discussions regarding risks and benefits, Astrid Gendolla’s practice in Germany did not stop face-to-face chronic migraine appointments despite safety concerns, but securing the personal protective equipment required to carry them out proved difficult.

“As a neurological practice, you just have a little stock,” says Gendolla, M.D. “All of a sudden we needed lots, and we didn’t get it.”
 

While Newman’s treatment plan was shaken, her stellar health care team was not – which is one factor that helped her navigate the periods without treatment.

“They were still 100% there when I needed them,” Newman says. “I can’t speak highly enough of them.”

Blumenfeld says health care providers can support patients by reopening and resuming care during the pandemic in conjunction with proper local safety guidance as Newman’s eventually did.
 

Newman’s chronic migraine care has become business as usual. But with COVID-19 threatening another wave come winter, Newman says she wouldn’t be surprised if she must eventually face disruptions again.

Aubrey Adams, AbbVie vice president of medical affairs, migraine, has seen the challenges people like Newman experience as a result of chronic migraine. She says providing helpful treatment options is key.

“At AbbVie, we’re constantly striving to advance care for people living with chronic migraine,” Adams says. “Our scientists are driven by helping alleviate struggles these patients face.”