In Arizona today, head and neck practitioners, private companies and support groups continue to work tirelessly to serve uninsured people through speech therapy programs that enable these patients to communicate and live independently.
They include people who have undergone a total laryngectomy, radiation treatment for head and neck cancer and those who stutter.
But many patients cannot afford the recommended length of treatment, often leading to devastating results ranging in severity.
“It’s really critical. I mean I could do a perfect surgery but if they don’t get therapy, they’ll never get their function back again,” said Dr. Savannah Weedman a specialist in microvascular plastic surgery, oral and maxillofacial surgery at Banner MD Anderson Cancer Center in Gilbert.
This functionality includes “learning to speak again, how to swallow again, how to train muscles back if they’ve developed weakness and with certain types of cancer, training the nerves back,” Weedman explained.
She said many insurance companies will pay for only a set number of appointments no matter how extensive treatment is deemed necessary, forcing them to choose between physical and speech therapy.
In those cases, patients literally are choosing between being able to walk again or functionally talking and eating.
The need for continued treatment is a costly reality.
For example, David Kinkead, a member of the board of directors of the International Association of Laryngectomy, underwent a total laryngectomy procedure eight years ago.
“To treat cancer of the larynx, they remove the larynx so we end up breathing through our necks,” he explained. “After most laryngectomies though, you are still able to eat and drink normally, at least after a little while.”
Often, the topic of postoperative care is brought up during group meetings and Kinkead has found that members often need the most support during the difficult and intense six-month period in which a laryngectomy patient requires a feeding tube and a full liquid diet.
This assistance system was complicated during the COVID-19 health crisis, as sessions had to transition online. Nonetheless, Kinkead was able to find a silver lining despite this and the Arizona native was able to connect with laryngectomy survivors from England, Virginia and California.
But Keri Winchester, the moderator of the MD Anderson branch of the Support for People with Oral and Head and Neck Cancer group for 18 years, found that entirely virtual meetings added additional strife to certain patients in recovery.
“I really hope we can get back in person, I know that there are several members who are older and don’t do the virtual thing,” Winchester said.
Before the pandemic, the support group had about 14 members but currently, that number has been roughly halved.
The topics of their monthly hour and a half sessions include “survivorship, side effects, ongoing issues regarding the treatments they have received for head and neck cancer as well as how it impacts their lives. This can range from things like dry mouth, how food tastes, how well they can or can’t swallow,” Winchester said.
Winchester prides herself on taking these complaints seriously, using them to give future patients realistic healing expectations and timelines for issues like loss or alteration of taste.
This also exposes the inequality of care received by patients caused by insurance policies with varying coverage.
“The patients that have Medicare, to be completely honest, don’t need or want for anything,” Winchester said. “They usually get the treatments they need; they don’t have to fight denials or referral issues.”
Patients with other policies can be a little bit trickier to get care for.
“If patients in Arizona have AHCCCS and they’re over the age of 18, they get absolutely no speech therapy,” she explained.
Jessica Hudson, the owner of Stuttering and Speech Therapy of Arizona, expanded on the difficulty of finding insured therapies, even outside of traditional hospitals.
“I can’t speak to all insurance companies, but I have encountered many that won’t cover speech therapy unless some sort of accident has happened,” Hudson said, “That’s really unfortunate because even though we don’t take insurance, it’s still a lot of clients that can’t access what they need.”
Today, many speech-language professionals are reaching out to representatives across the Valley, advocating for the addition of speech therapy to the preexisting physical and occupation coverage for the more than two million Arizonians under AHCCCS insurance.
“It’s clearly an inequality, we’ll cut out your tongue and save you from cancer but we won’t give you functional rehabilitation to make your quality of life worth living,” Winchester said. ν