People with ALS should be able to proactively get feeding tubes

After my husband Todd’s ALS diagnosis in 2010, we regularly monitored the forced vital capacity (FVC) of his lungs. This was because the neurologist at our ALS clinic had told us that if Todd wanted to get a feeding tube, he’d need to do it while his FVC was above 50%. Otherwise, putting him under anesthesia for surgery would be too risky.

In June 2010, Todd’s FVC was 104%, which meant that the amount of air he could forcibly exhale from his lungs after taking the deepest breath possible was better than average for a male of his age and size.

Todd continued to have his lungs tested every three to six months. In October 2016, his FVC was 88%. By October 2017, it had dropped to 83%. A year later, it was 71%, and less than a year after that, in July 2019, it was 57%.

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At that point, it was prudent for Todd to get a feeding tube while he could still survive the anesthesia. We scheduled the procedure for August 2019.

During the pre-op consultation, the anesthesiologist said he would use “a twilight dose” of anesthesia so that Todd’s lungs could recover more easily. Todd reiterated to the surgeon that he didn’t want an emergency tracheostomy if something went wrong during the procedure.

I waited, praying that all would go well. And it did!

When best practices aren’t covered

I don’t recall there ever being a question about whether Medicare would pay for the surgery, even though Todd could still swallow and hadn’t experienced significant weight loss. The doctor may have documented moderate weight loss because Todd had lost a few pounds due to muscle atrophy. We probably shared with him some incidents of aspiration and choking, but I don’t recall it being used to justify the surgery. We just got it ordered and had it done, and Medicare paid the hospital.

But now I’ve read on social media forums that people with ALS are being told they can’t get the surgery covered by insurance until they have problems swallowing, in spite of declining FVC and the need to have the surgery done while it’s still survivable.

When the husband of Samantha Powell, a fellow spouse caregiver, first requested a feeding tube, his FVC was 34%. But he was told that Medicaid wouldn’t approve the procedure because he didn’t have impaired swallowing or weight loss. Now his FVC is in the 20s, and the surgeon won’t insert the feeding tube unless they do a tracheostomy at the same time. She says she’s angry that they weren’t allowed to be proactive.

Wendy West, another spouse caregiver, shared that her husband’s FVC had held steady for a year, but at his last appointment it had dropped from 50% to 30% in just six months. They were told by their ALS clinic that because he hasn’t lost weight and is still swallowing and eating, they can’t justify the surgery to his insurance.

The benefit of early insertion of Todd’s PEG tube

For a couple years after the insertion of Todd’s PEG tube, I flushed it with water daily to keep it clean and used it to give medication when Todd was sick in bed. Eventually, Todd began having difficulty swallowing pills, and we started using it for all of his medications and vitamins.

This past spring, nearly five years after getting the feeding tube, he finally used it for nutrition. He was sick and had no appetite, so I fed him Ensure nutritional shakes through his tube while he remained in his bed.

Todd now has trouble swallowing during meals. He keeps eating because it’s something he enjoys, but he’s had to give up eating certain foods like popcorn and nuts, and we always have water ready for him to clear his throat. It’s just a matter of time until he’ll need to give up eating entirely. If he’d waited until now, it’s unlikely a surgeon would agree to perform the surgery because Todd would be unlikely to survive with his FVC probably in the single digits and needing noninvasive ventilation nearly 24/7.

I am shocked, saddened, and furious by the difference in our experience and what these other families are experiencing. I’ve learned that Medicaid in some states and Medicare Advantage, for those who purchase a Medicare-approved plan from a private company, often have strict criteria that don’t allow for people to get the surgery until they have trouble swallowing and are losing weight. Unlike traditional Medicare, these plans often have pre-approval processes that may leave less clinical discretion up to the doctors.

This isn’t right. People with ALS should be able to proactively prepare for what is coming.

Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to ALS.