Time matters and Black patients are diagnosed with ALS later than most

ALS Tony Easter
Posted at 3:05 PM, Jun 21, 2023
and last updated 2023-06-21 18:27:39-04

RICHMOND, Va. — Tony Easter is an on-the-go kind of guy. The former Boy Scout troop leader loves being outdoors. He is often found with his trusty walking stick during hikes.

"She's good and hard," Tony said while holding a wooden walking stick he carved himself. "And when I go camping or hiking, you best believe this is with me."

"He's definitely a hiker," his wife Sherry said. "Well, used to be anyway."

ALS Study

The Hanover couple was on a walk in 2019 when Mrs. Easter noticed something was off.

"I was watching him one day, and I said, 'Tony, why are you limping?' And he hadn't even noticed that he was limping," she said.

The limping continued and the pain worsened on a trip to Europe.

The consistent pain kickstarted a cycle of doctor's appointments and, eventually, surgeries.

But the pain was persistent.

Tony began falling frequently.

At an appointment one day, Tony had a devastating fall.

"I just went straight forward," he said. "Broke my glasses, busted my nose, my legs all up. I mean, face down," Easter said. "I knew something had to be wrong because I mean, it was no way in the world I could continue going like that."

ALS Study

About two full years after he began limping, Easter was finally able to get an appointment with a neurologist, who shared life-changing news.

"I'll never forget, August 2, 2021, when we had that appointment," Mrs. Easter said. "That's when the doctor, the neurologist said it's no question. It's ALS."

ALS is a terminal neurodegenerative disease that breaks down a patient's ability to use their arms and legs, as well as their ability to speak, swallow, and breathe on their own.

Patients go from their initial symptom onset to death within about three to five years.

After Tony's diagnosis, he and his wife moved to a one-story home that had doorways large enough for his wheelchair.

Tony said he had to sell his vehicles and outdoor tools he loved to use in the yard. Tools, he said, he'd never be able to touch again.

"That was a tragic moment for me. I literally just said, 'Take what you want and I'm gonna leave.' And I had to go ride somewhere, and I just couldn't stand it," Easter said.

Now, Easter needs help with basic things, like getting out of bed and getting dressed.

"You might as well say every aspect of our lives has changed," Mrs. Easter said.

ALS Study

The two-year-long process of getting a diagnosis prevented Tony from getting certain treatments.

"Weeks matter and the timeliness of the diagnosis, because by the time Tony got there, even him being eligible for certain trial drugs, he couldn't participate in some trials because he was too, too far along in the disease progression. So, he couldn't even participate in some," Mrs. Easter said.

"It sounds as though there were sort of key things that should've been noticed along the way. Like the drop foot, the falls, the numbness and tingling, the things that are not ever getting better but getting progressively worse," she said. "It sounds as though there are key things that should've been noticed along the way that it should not have taken two years to figure that out, or at least to refer you to a neurologist, you know."

Easter was almost too late getting a feeding tube inserted as well.

Black patients like Easter, are getting later diagnoses, and often are seen by neurologists when their disease is more severe, and their respiratory function is low, according to a study from Virginia Commonwealth University's ALS Clinic.

"There is a 65% increase in diagnostic delay for African American patients compared to Caucasian patients," Dr. Kelly Gwathmey, VCU's ALS Clinic Director, said. "The key is finding these patients early in their disease to initiate medications that slow progression and prolong their lives."

The clinic is now launching a pilot program that hopes to get potential ALS patients into a neurologist's office in a matter of four weeks by educating primary care physicians about spotting the signs and symptoms of ALS early.

"We can prolong life, we can increase the quality of life, we can plug patients in with resources they so desperately need sooner. We can often get them into clinical trials, if they're interested in that. The sooner we see them, the higher likelihood it is that they'll qualify for research," Gwathmey said. "It is a very meaningful difference."

According to VCU Health, on average, an ALS diagnosis takes anywhere from 10 to 16 months.

But there are reasons, Gwathmey said, Black patients may be finding out later.

"There could be a role in implicit bias on the side of the providers that initially evaluate these patients. They might be thinking that, instead of ALS, our patient had a stroke or has a neck problem or a back problem. And then that sort of sets them down on the wrong road to unnecessary surgeries, seeing specialists that aren't appropriate to be assessing them," Gwathmey said.

"There's also potentially some structural reasons. Perhaps African American patients don't have as much access to the necessary physicians and procedures and imaging studies in order to make the diagnosis," Gwathmey said.

"We have insurance, and it still took over two years. So, we're the 'lucky ones' I guess," Mrs. Easter said. "And it still took two years."

Mrs. Easter said Tony's treatment costs roughly $14,000 a month. The family was able to receive a grant to cover most of the cost, now looking for future options.

Despite the delay and Tony's deteriorating health, the family said their faith guides them, allowing them to hold out hope.

"There's got to be a first person who's cured of this. There's got to be a first person, you know," Mrs. Easter said. "Why not him?"

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