ALS patients hope Congress can deliver access to potential therapies with bipartisan bill

Advocates pressing for action in the waning days of the lame duck session

It's the fight of her life. 

Mayuri Saxena is 36 years old, holds a double master's degree and has lost the ability to use her body bit by bit.

She was diagnosed with ALS four years ago, and the progression of the neurodegenerative disease has been swift and relentless. She can no longer walk, stand, use her arms or legs, swallow unassisted or speak. As a New Yorker coming of age in a post-9/11 world, she once hoped to affect change through her work in international relations. But as a quadriplegic, she now relies on round-the-clock care for the most basic of necessities, and even a cough could prove fatal.

Mayuri is one of about 30,000 Americans who are staring down a death sentence. The typical timeline from the onset of symptoms to death for an ALS patient is two to five years, and about 6,000 Americans die each year with the disease, which affects nerve cells in the brain and spinal cord.

The disease disproportionately affects those in the military; one in six people diagnosed is a veteran. Pat Quinn, co-founder of the popular ALS Ice Bucket Challenge that raised awareness about the illness, died from it earlier this week. He was 37.

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While there is no cure and few therapeutics on the market, pharmaceutical companies are developing drugs and therapies that might treat this terminal illness -- and the Accelerating Access to Critical Therapies for ALS Act, better known as the Act for ALS, would grant more patients access to those potential therapies currently in trials.

Mayuri's brother, Mayank Saxena, says this legislation could mean the difference between life and death for his sister.

Mayuri Saxena, pre-illness. (Photo courtesy: Mayank Saxena)

Mayuri Saxena, pre-illness. (Photo courtesy: Mayank Saxena)

"There's no word to describe the agony I feel that she's going through that, knowing there's biotechnology that exists on this planet that could have helped her and could help her still," he said. "This will give [patients] a pathway. Even if it doesn't work for them, at least they're marching toward some type of hope."

Rep. Mike Quigley, D-Ill., who is co-sponsoring the House legislation along with Jeff Fortenberry, R-Neb., echoes that sentiment.

"Hope may be the best thing," he said. "I think it provides hope, and in these extreme times, that's very important,"

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For both Quigley and Fortenberry, this legislation is personal. Quigley's father suffered from a degenerative neurological condition, and Fortenberry's brother-in-law died from ALS. He was survived by a wife and four children.

"People are suffering, and we can help," Fortenberry said. "I've met so many beautiful people who have come to my office to explain this story, who are of good heart, who are courageous, who are fighters, and have created a network of solidarity trying to think more creatively about how to attack this disease."

If the bill passes, it would provide a pathway to treatment for patients who don't qualify to participate in phase three clinical trials by allowing access to drugs and therapies at trial sites. It also would fund research for ALS and other neurodegenerative diseases and create a collaborative of officials in the public and private spheres with the goal of speeding up development and approval of drugs for these types of illnesses.

With close to 200 co-sponsors, House legislators are optimistic about the bill's passage. A twin bill, co-sponsored by Sens. Chris Coons, D-Del., and Lisa Murkowski, R-Alaska, is making its way through the Senate, and advocates are hopeful the legislation can land on President Trump's desk before the year's end.

"We have a movement across the country of people who have stepped up. ... There's a strong desire for real science, and real hope to stop the suffering," Fortenberry said. "I think we can get this done."

With only a couple of weeks left in this legislative calendar, Fortenberry hopes the House can move quickly through a series of aggressive, end-of-year efforts.

"We've set this up purposely so if there is alignment, we can run this fast and get it through to the president's desk. We're not there yet, but that would be my desire," Fortenberry said.

In a bitter political climate, Quigley sees this legislation as a chance to show the American people that lawmakers can work together for the common good.

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"It's hope for those who look at our country and see dysfunction but given an opportunity ... [will see] that we can accomplish something," he said.

For Mayuri, the bill's passage would be not only an accomplishment for the ALS community -- she believes it will give those trapped inside increasingly lifeless bodies the will to live.

Mayuri Saxena, center, with her brother Mayank and their mother Dr. Madhu Saxena. (Photo courtesy: Mayank Saxena)

Mayuri Saxena, center, with her brother Mayank and their mother Dr. Madhu Saxena. (Photo courtesy: Mayank Saxena)

"Other ALS patients come to me and ask whether it is worth fighting for their lives," she wrote, using a speech-generating device that operates with eye gaze technology, similar to the machine world-famous scientist Stephen Hawking used to speak. "That answer depends on whether this bill gets passed or not."

With that in mind, her brother Mayank, advocate Michelle Lorenz and a team of grassroots groups have waged a tireless and highly organized campaign to raise awareness among congressional members and their constituents, including a letter-writing effort and website called HelpMayuri.com that helps mobilize supporters to email their local representatives. Lorenz has met with more than 200 legislators during the last five months and with 17 senators' offices this week.

"Death is not a partisan issue," she said. "If you can agree on any bill, for God's sake, it should be this bill."

In the waning days of the lame duck session, Mayank is pleading with lawmakers to help his sister, who may die if action is put off until next year.

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"She is my sister. She could also be your mother, who falls down the stairs. It could be your son who collapses on the soccer field," he said. " If this were your loved one who was actively suffering and dying, and you knew there was a one percent chance of hope, what would you do to get that treatment in their dying bodies today?"