ALS is a rare disease, but challenges that patients and families encounter are familiar

There are around 100 patients living with ALS in Hawaii.
Published: Jun. 30, 2022 at 5:12 PM HST|Updated: Jun. 30, 2022 at 6:59 PM HST
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HONOLULU (HawaiiNewsNow) - “Welcome to a ‘Medicare Moment with Martha.’”

There’s a reason for the nickname ― “Medicare Martha” ― and why she has a radio show syndicated in 12 states.

Because people have questions and lots of them.

That includes ALS patients and their loved ones, who are facing a progressive disease that often renders people prisoners in their own bodies and are calling for action to provide more options long-term care. Grappling with the condition itself is difficult enough, but families also face additional challenges as they try to navigate the health care and health insurance systems.

“They need to understand that health insurance is going to generally take care of what’s specifically medically necessary,” said “Medicare Martha” aka Martha Khlopin, who has decades of insurance experience. “So they may have to be the 24/7 person who’s there to bring a glass of water to take their medication, to help them toilet, to help them come to a standing position.”

ALS is a rare condition that impacts about 5 in 100,000 people, but it requires round-the-clock care similar to other chronic diseases. There are around 100 patients living with ALS in Hawaii. And Dr. Brandon Hirota actively treats 10 of them.

“ALS stands for amyotrophic lateral sclerosis, some people will call it motor neuron disease or many people recognize it as Lou Gehrig’s disease,” said Hirota, a neurologist with Hawaii Pacific Health. “So this is a neurodegenerative disorder. And that means that a certain group of cells within the nervous system, including the brain, and spinal cord, these group of cells are dying off.”

Hirota says most of the patients he encounters opt to stay at home and have family members care for them for the rest of their lives ― usually three to five years after diagnosis, but there are people who live much longer.

“There’s a huge spectrum of life expectancy with these patients,” Hirota said.

“And that’s what I tell my patients, everybody wants to know, when am I going to go from this disease? It’s scary. And I’m very upfront with them. We don’t know, unfortunately, I’ve had patients that from diagnosis, they only lived a year. And on the other side of the spectrum, I have patients exactly who are about 15 years out with still mild, minimal symptoms.

“Why is that? Nobody really quite knows yet.”

Khlopin says uncertainty with ALS and its progression is compounded by difficulties in accessing long-term care options.

That’s true for families grappling with all kinds of chronic conditions, and it’s a situation that is only expected to worsen as Hawaii’s population continues to gray.

The latest statistics show 1 in 5 adults in Hawaii identify themselves as caregivers or about 20% of Hawaii’s adult population. Half of them say they have provided care for a loved one for at least two years and about a third provide care at least 20 hours a week.

AARP says that adds up to 157,000 residents providing 131 million hours of care each year.

If you paid them for that work, it would be valued at more than $2 billion.

Khlopin said the numbers underscore just how overburdened caregivers are.

Samie Solina joins Dillon Ancheta to expand on her 3-part series on ALS and the growing call for expanded care options in Hawaii.

“It’s really important that we figure out a way to fill those gaps,” she said, “so we can provide some support and help to those people to take care of their loved ones.”

Throughout the years, Klohpin has seen countless diagnoses change lives.

She has seen families go bankrupt and caregivers quitting their jobs to take care of family.

“There are a lot of critical illnesses that people can relate to because it will follow the same pattern as what you need to do,” Khlopin said. “And the most important thing people need to do is understand that when someone is diagnosed with a very serious illness that will require a lot of care ... there is no person that comes out of the woodwork to help you.”

For someone who answers questions about so many different illnesses, Khlopin adds it’s amazing to hear so many similar problems. “It’s the same reason why I think that should be important to anyone who’s listening, you have to understand that these conditions can come about at any time, unexpectedly, and you won’t know where to go,” she said.

NEXT IN THE SERIES: Portrait of an ALS family

On Friday, HNN’s Samie Solina will conclude her three-part series on ALS with a story that underscores the challenges the progressive disease has on patients ― and their families.

PART 1 IN THE SERIES: ALS robs patients of so much, but loved ones are fighting to make sure they don’t lose quality of life

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