HUNTSVILLE, Ala – ALS, better known as Lou Gehrig’s disease, currently impacts about 20,000 Americans. It’s a neurodegenerative disease that causes muscle weakness and eventually paralysis.
Even though it’s a rare disease its ripple effects are being felt right here in North Alabama.
There is no cure for ALS. Currently, there are very limited treatment options for patients. While Kim Messervy battles this disease, she is also fighting to change that.
But before we tell you that story, it might be better to start by telling you a little about her family.
Calling Kim and Chris Messervy high school sweethearts doesn’t quite cut it.
“Kim even wrote about me in her journal when she was 8-years-old,” Chris Messervy laughed. He reminded his wife it was a Hello Kitty journal.
They grew up on the same street in Southeast Huntsville.
“Went to Grissom together, our parents went on family vacations together every summer,” Chris said. “We kind of joke and say we dated for 18 years, and then got married, and we’ve been married for 20 years.”
The two made a happy life together. They have four kids and small business.
Then in 2019, Kim, an avid runner, started noticing something strange at the gym.
“I couldn’t do pushups or much with my right arm. It was getting a little weaker. I thought it was just a pinched nerve,” Kim remembered.
After going to a chiropractor and another doctor she saw a neurologist.
“They did an EMG and EEG and um,” Kim paused.
“They determined that she had ALS,” Chris said.
An ALS diagnosis starts a terrible clock.
The life expectancy of a person with the disease is 2-5 years. The Messervys knew it was fatal. They didn’t know how limited their treatment options would be.
“I think that’s one of the most frustrating things being thrown into a disease like this. It isn’t something we really realized until we were in this situation,” Chris said.
“You pretty much have to figure out for yourself what you want to do and research what’s going on in your body,” Kim explained.
There are only two FDA approved drugs to slow the progression of ALS.
Kim tells News 19 she tried the drug Riluzole.
“It was awful, constant nausea,” Kim stated.
“That’s the one that would extend life two months so you’re just kind of like, what’s the point of that,” Chris added.
“Yeah, and that was only proven in about 7 percent of patients,” Kim stated. “So not really good stats.”
Edaravone was approved by the FDA in 2017.
“It’s a difficult drug to take because it’s an infusion every day for 14 days the first month, and then every day for ten days every month after that. So, almost everybody, because of the repeated infusions, requires a port,” said Dr. Amanda Peltier, Associate Professor of Neurology at Vanderbilt University.
She says initially, many patients were excited for the opportunity to try the drug.
“Then I think as all of us have watched patients continue to progress on it and it’s not been as dramatic an effect as we hoped, I would say that fewer and fewer patients opt to take it,” Dr. Peltier explained.
Peltier says the number of treatment options for ALS patients is ‘disturbingly’ frustrating.
“It’s really just hard when you know patients ask you what can I do and we just don’t have a whole lot to offer,” Peltier said.
“The treatments are not great. And they don’t give you back anything you have lost.”Amanda Peltier, Associate of Neurology at Vanderbilt University
The landscape for drug treatment has few signposts and no oasis. Creating the drugs takes 100s of millions of dollars. Since ALS is a rare disease it can be difficult to motivate companies to spend money researching and creating new treatments. Dr. Peltier says it’s a problem compounded by many failed attempts to create new ALS drugs.
A few drug companies are working to create new drugs to treat the disease, but that process can take years.
“When it takes ten years to get through a trial, you don’t have ten years,” Kim said as she began to cry.
“It’s OK,” Chris said as he comforted his wife.
“There is no reason someone shouldn’t be able to try treatments that could help, especially when they don’t have time.”Chris Messervy
There are barriers to experimental treatment
ALS patients can access experimental treatments by being part of clinical trials, but many don’t qualify based on how far their disease has progressed. And the waiting room is incredibly crowded.
“Right now, there’s less than 2,000 total spots in all the open clinical trials in the United States and there’s more than 20,000 people with ALS,” said Dr. Richard Bedlack, Duke ALS Clinic Director.
Patients can ask to be part of the expanded access program to try experimental drugs.
Dr. Bedlack says to take part in expanded access a patient must ask, the physician must be willing to engage with the patient in the prescription of the medicine, the company who owns the drug has to be willing to give it away, and the FDA has to approve an application submitted by the physician.
Expanded access is filled with red tape and costs for doctors. Dr. Bedlack says the FDA has approved most expanded access applications. The issues lie in two other areas. One is a lack of resources for physicians.
“They’re uncomfortable with the fact that this is going to take time and its going to take a coordinator that has to be paid for and there’s no money for that,” he explained.
The second issue are problems with companies.
“Companies generally don’t have a lot incentive to just give away products that they’ve spent, in some cases, 100’s of millions of dollars developing,” Dr. Bedlack said.
He says there are only 50-100 ALS patients currently taking part in expanded access.
It all combines to further the heartbreak.
People are left knowing there are treatments they hope could help, but they can’t use them.
“There’s a good analogy that someone said. It’s kind of like being on a sinking ship, and there’s lifeboats on the ship, but the lifeboats haven’t been certified by the coast guard… We can’t use them.”Chris Messervy
The Messervy family is working to raise awareness about a bill in Congress aimed at breaking down some of these barriers to treatment. It’s called ACT for ALS.
“ACT for ALS is the first thing I’ve seen in 20 plus years that goes after the financial barriers at the level of the physician and the company that are involved in this equation,” Dr. Bedlack stated.
ACT for ALS is made up of two bills, one in the House and Senate. The House bill is co-sponsored by Congressman Jeff Fortenberry from Nebraska. His brother-in-law died from ALS.
“We want to give patients access to treatments that are showing some promise. And right now, there are very severe limitations on doing that. And it’s frankly unfair. So, those two dynamics, better access and better research, hopefully, can give people real hope and begin to make progress against this horrific disease,” Said Congressman Jeff Fortenberry (R-Nebraska).
The legislation would also create a Center for Excellence for Neurodegenerative Diseases at the FDA to accelerate the approval and development of new treatments. This center is being compared to the FDA’s Center of Excellence for Oncology.
ACT for ALS was introduced last year, but it wasn’t voted on. Congressman Fortenberry thinks many lawmakers are confused about how a new law called Right to Try fits into this.
“I think there is a lot of confusion in Congress around a previous law called Right to Try. And Right to Try means that everything else has failed, and you’re on the pathway to dying, you have the ability to seek an experimental drug. That was a breakthrough that was signed into law. I was part of that as well. However, there are still some impediments in Right To Try that prevent people in disease categories of ALS from accessing emerging treatments because of cost and limitations. So, that’s one big problem that we want to solve,” Fortenberry said.
That’s the battle in Washington. In Huntsville, the Messervys are living with this disease.
It’s been 16 months since Kim’s diagnosis.
“She doesn’t have much function, especially in her hands and arms. It’s really difficult for her to walk,” Chris said.
“One person described it as kind of being like a snowman where every day you melt a little bit. You see their function deteriorating to where each day it’s tougher to do basic tasks. And that’s where Kim’s at.”Chris Messervy
It also affected her hypothalamus, impairing her ability to regulate her emotional response.
“So the kids might tell a joke or say something funny and you might chuckle, but Kim might just, you would think that she thought you told her the funniest thing ever,” Chris explained.
“And the thing is it’s not like I want to do that because I don’t,” Kim added.
“You don’t have control,” Chris and Kim said together.
In 90 percent of ALS cases, doctors don’t know what causes the disease.
Kim has had dozens of tests trying to find out why she has this rare condition.
“We found out she has like 10 times the mercury in her body that she should when we started. So, we saw a dentist in Texas, an oral surgeon who treats people with rare diseases, and removed all of her mercury fillings from her mouth,” Chris said.
They hope learning the why will give them information to help slow the disease.
Kim can no longer eat solid food so the entire family joins in to make her smoothies filled with supplements they hope will help her heal. She sticks to a strict diet — forgoing sugar now for over a year.
“Which I think is insane. I could never do that,” Chris said, marveling at his wife.
Congressman Fortenberry says ACT for ALS will be reintroduced to Congress this year. He hopes sometime soon.
“We got close, honestly last year. I do think the momentum is going to carry over into this year. I carry a lot of guilt that we didn’t carry this over the finish line earlier. But we’re not done,” Fortenberry said.
The Messervys aren’t sitting around waiting for a magic pill or bills to pass.
They’re fighting the disease at home. Kim now uses a walker, but she still rides a stationary bike for 40 minutes. Every day.
“It’s called exercise with oxygen therapy. So, it’s similar to what an oxygen chamber would do, where it fuels your body with high percentage of oxygen,” Kim explained.
Kim has slowed down, she hasn’t stopped.
“She’s just done a great job, she’s been really disciplined just worked really hard to try to put her body in a place where it could naturally heal and there are people out there where that’s happened,” Chris said.
“Right,” Kim added.
That’s what they’re pushing for – a cure.
“It’s really rare. It’s really rare,” Chris said.
In the face of this harrowing disease, the family continues to draw strength from faith and hope.
The Messervys want all of Alabama’s lawmakers to co-sign ACT for ALS. Last year Congressman Mo Brooks, Congresswoman Terri Sewell, and Senator Doug Jones supported the bill.
News 19 contacted Alabama’s current congressional delegation. We have been told by many of them that they are waiting till the legislation is introduced to determine if they will support it.