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Diagnosed at 37: The fight for access to ALS treatments

ALS patients say bill is a matter of life or death
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Posted at 3:58 PM, Dec 15, 2021

BUFFALO, N.Y. (WKBW) — Imagine being told, at 37 years old, that you would likely only live another 2-5 years. That was reality for Kristin Goetz, who moved back home to Buffalo a few years ago.

Kristin noticed that she was losing her balance more frequently, even falling at times, so she went to the doctor.

"I remember walking out of the doctor's office - and they give you this bright red folder that says 'ALS' across the front of it, and I'm like, 'why are you giving this to me?'" she recalled.

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Kristin was diagnosed with ALS, known by many as Lou Gehrig's Disease. It causes nerve cells to break down and muscles to weaken. Eventually, patients with ALS are no longer able to talk, swallow or breathe on their own. Right now there is no cure for the disease.

Kristin says as soon as she was diagnosed, she felt like she was being pushed down a path of immediately getting her affairs in order. She still remembers what someone said to her after learning she was planning to by a house-- and the impact it had on her.

"She said to me, 'I don't think you should buy a home in your condition,'" Kristin said. "And I thought, 'why would I not accomplish something that I've always wanted to accomplish in life just because I'm sick?' And I think that was the moment I decided I wasn't going to let ALS define me-- because as soon as I did-- it would defeat me."

Since that day, Kristin has tried every medication available, and anything she's heard might help. She says she's still experienced some deterioration and decline, but also says when it comes to treatment for ALS-- there's a major catch.

Right now, there are no medications available that will reverse the course of ALS, and clinical trials are not easy to get into.

"Most clinical trials you have to be diagnosed two years or less. I'm already past the two year mark," Kristin explained.

Michelle Lorenz is the co founder of a new non-profit called Voices for ALS, which advocates for help for those living with the diseases. She says 90% of people who get diagnosed don't qualify for a single clinical trial. Some, like Kristin, are still able to speak and move around their homes, but others are feeling the full impact of the disease.

Mayuri Saxena is 37-years-old and lives in New York City. She's no longer able to talk because of the toll ALS has taken on her body. But it hasn't stopped her from advocating for patients.

Mayuri Saxena - "Mayuri's Story"
Mayuri Saxena is advocating for the ACT for ALS to pass Congress.

"ALS has taken away my ability to move and my ability to speak - but it will never take away my voice," she said through a computer program that allows her to communicate by tracking her eyes.

Right now - ALS patients are pushing for Congress to pass the "Act for ALS." The bill would give ALS patients the right to access and try drugs in Phase Three trials before they go through the full FDA approval process. Supporters of the bill say the full approval process is too involved and too long for them, because once they're diagnosed, patients usually lose their battle with the disease within five years. They'd like to be given the chance to try drugs that might help, and say they're ok with them not being fully-approved, because right now nothing that's available is going to change their outcome.

"ALS patients are saying, 'we're like on the Titanic. The ship is going down,'" explained Lorenz. "'There's nothing you can do that's going to make it more likely that I'm going to die.' These patients are screaming and begging and crying for access to drugs. They've dying. They've been given a death sentence within 2-5 years, and they're spending the last days, weeks and months of their lives asking congress to help them."

Michelle Lorenz is an advocate for ALS patients
Michelle Lorenz is an advocate for ALS patients across the country.

You can help patients push Congress to pass this bill.
If you click here, you can access a form to contact your representative and ask him/her to take action.

As patients wait to see if laws change before the new year, Kristin says while her diagnosis has not been easy to deal with, it's taught her the importance of staying positive, even when things are tough.

"It has a funny way helping you focus on what's important in life. Life's too short," she said. "I am home surrounded by people who can support and help me through this. And it's helped me focus on fostering relationships and trying to live each day to its fullest. Because we really don't know what tomorrow brings."

She also says, she'll continue to try anything she can to stay as healthy as possible, because if tomorrow brings something that will help, she wants to be prepared.

"I want to keep my body in the best possible condition right now so that if a treatment does come around, I'm in a shape to receive it," she said.

If you'd like to learn more about Mayuri's story, you can watch her YouTube video here.