Telehealth’s uncertain future raises alarm bells for cancer patients

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The relaxation of telehealth regulations in response to the COVID-19 pandemic has triggered a wave of interest and support, with patients noting the convenience, discretion and safety of virtual care as major selling points.  

But another, perhaps less publicized advantage of telemedicine is the availability of specialists for patients – particularly those with chronic diseases such as cancer.  

Jenny Ahlstrom, who was diagnosed with multiple myeloma in 2010, says the recent changes have made it clear just how big a role virtual care can play for people with cancer and other chronic diseases.   

About 32,000 people will be diagnosed with multiple myeloma, a cancer of plasma cells, every year. And despite advancement in treatments, said Ahlstrom in an interview with Healthcare IT News, “we still have 50% of patients dying after five years.” In Ahlstrom’s experience, myeloma patients benefit from access to a specialist – and, preferably, second opinions.

“General oncologists are trying to do a lot with what they have,” she said. “But 95% of myeloma patients relapse. You’re constantly reassessing your needs.”

Ahlstrom, who was a systems engineer and marketing representative for IBM before her diagnosis, says she wanted to treat addressing her disease like a “startup,” with a tech-focused approach. She started HealthTree.org, which allows patients to aggregate their health information and connect with each other, and to find clinical trials that may be a good fit.   

“We’re very tech-oriented, which sets us apart,” said Ahlstrom. “We have our own in-house software development team,” which allows the organization to create suites of tools and platforms geared toward patients.  

“Telemedicine has been a huge blessing for these kinds of cancer patients,” she said. 

Near the beginning of the pandemic, Ahlstrom’s organization asked 1,100 patients about their use of virtual care. By April or so, 60% said they’d used telehealth, compared with 10% before COVID-19. One big reason for that is the ability to access specialists around the country, Ahlstrom said.  

“We recommend they get a second opinion for every treatment,” she explained. But at a time when travel can present a potentially fatal danger – especially for immunocompromised or senior people, which myeloma patients tend to be – consulting with a specialist via video chat can be a much safer option.   “There’s not a lot of physical exams that happen” for such consultations,” Ahlstrom said.   

Ahlstrom noted that Black people are disproportionately likely to be diagnosed with myeloma, but often have worse outcomes, making telehealth a potential way to help bridge the divide that inequity has created. She also said remote patient monitoring tools are of growing interest among researchers. Some of them, for example, are using wearables like Fitbits to investigate the correlation between disease progression and fitness.

However, Ahlstrom also expressed alarm at the idea that regulations that were temporarily rolled back in light of the pandemic might be reinstated. The future of such regulations (and payment for virtual care) has created uncertainty for providers, with some organizations, such as the American Medical Association, expressing “dismay” at the prospect of some telemedicine waivers being made permanent.  

Ahlstrom argues that this uncertainty is trickling down to patients. She is currently experiencing a relapse and sought out telemedicine consultations in multiple states. At some facilities, she could speak with a specialist virtually; others told her they’d stopped offering telemedicine.

She called the inconsistency “a total nightmare for patients.”  

Policymakers could restrict telemedicine by certain modalities or treatments, she said, but to instill a blanket rule “doesn’t make any sense.”

“I think patients should demand more,” she said. She also noted the role that telehealth can play for other patients with chronic disease.

“This experience with me and myeloma has really cemented the need that if you have a disease and there’s a specialist somewhere, you should be able to see that specialist,” she said. 

Kat Jercich is senior editor of Healthcare IT News.
Twitter: @kjercich
Email: kjercich@himss.org
Healthcare IT News is a HIMSS Media publication.