In the wake of cuts to federal research funding, a Navy veteran diagnosed with Stage 4 cancer will not be able to receive an experimental treatment that he says extended his life after doctors gave him “weeks” to live in 2020.
“As of right now, I cannot receive the same drugs that I received before, the ones that saved my life,” Kyle Lewis, who served in the Navy from 1999 to 2003, told Task & Purpose. “A lot of the tumors, lesions on my organs are all still there and this drug has sort of been keeping them at bay. The data that exists now says there’s an 80% chance that my cancer will come back within the next year or so.”
In 2020, doctors told Lewis he had Stage 4 melanoma cancer that had spread to his liver, spleen, and lungs. According to Lewis, his doctors told him “you have weeks to live, unless you start this very, very aggressive and experimental treatment.”
As part of his experimental treatment through Johns Hopkins University in Baltimore, Maryland, Lewis received infusions of Opdivo and Yervoy, two immunotherapy drugs approved by the U.S. Food and Drug Administration to treat lung and other cancers but are still considered an “experimental” treatment for melanoma.
The trial was funded by the National Institutes of Health, the lead source of medical research funding in the U.S. In February, NIH announced caps on “indirect costs” which slashed more than $4 billion from research institution budgets like Johns Hopkins, thus affecting ongoing research projects, Johns Hopkins officials said in a release.
The cuts to NIH also come amid broader concerns over the future of veteran-focused research, including at the Department of Veterans Affairs where 83% of its research staff could be laid off in coming months and years because of a federal hiring freeze.
“I have been through some shit in this life of mine, and Stage 4 cancer was not even the hardest,” Lewis said. “I go into my appointments and the most gut-wrenching thing for me is to see kids with cancer or kids with life-threatening diseases. That is what’s not fair. That is horrible and to know that these kids’ treatment is at risk now because of the slashes to medical research, that is crushing to me. I can’t fathom how anyone would be OK with that.”
In early February, Johns Hopkins University joined a federal lawsuit with 12 other universities in an effort to block NIH funding cuts that support 600 ongoing clinical trials at Johns Hopkins, like Lewis’ treatment.
“We have the science available to save people’s lives, but we’re not gonna do it because of political decisions,” Lewis said. “I’m dumbfounded by it.”
Lewis’ journey
Lewis joined the Navy in the late 1990s and worked as a cryptologist, deploying to the Middle East on a Navy destroyer. After the military, he worked in the intelligence community for 16 years and then for two more years with U.S. Cyber Command, where Lewis described his job as, “I spent the last 7, 10 years stealing terrorists’ money.”
Before his diagnosis, Lewis said he had felt “off” for months. He was “sweating all the time,” had frequent headaches and experienced a pain in his chest that he thought was inflammation from a minor weight-lifting accident.
Lewis vividly remembers his last day of work on Jan. 6, 2020. He was on a video teleconference with 50 people in a room and another 200 or so who were spread out around the world. Lewis was sweating profusely and unable to collect his thoughts. A friend and colleague noticed and asked him if he was alright.
That day prompted Lewis to go to urgent care where he was given anti-inflammatory drugs. The medication didn’t work so Lewis returned to doctors for a follow-up and an X-ray.
“It’s such a clear lucid moment that I’ll remember the rest of my life,” he said.
When the physician’s assistant returned, he grabbed Lewis’ leg and cryptically said: “hey, go see a better doctor and do me a favor, reach out in a few weeks, let me know how you’re doing.”
The next doctor ran an MRI and a PET scan. “Immediately they’re like, ‘wow, your body is just full of cancer right now,’” Lewis recalled.
Lewis said he was “fortunate” to join a clinical trial at Johns Hopkins’ cancer research center where he received an infusion of drugs while watching re-runs of Friends on television. The trials did not come without a cost. Lewis went deaf and blind for one month, a side effect of the medication as it attacked his eyes and ears, he said. It took three infusions of the immunotherapy drugs to see positive results, he said.
While his tumors shrunk from the medicine, they hadn’t completely disappeared so Lewis also began targeted chemotherapy. It took about a year until he felt well enough to go outside.
Lewis said the drug’s efficacy is five years, a timeline he just recently hit.
“I actually go back for an appointment in April, which is my first checkup in six months where I find out whether or not I’ve still got it in my body and whether or not there’s anything that Johns Hopkins can do about it,” Lewis said.
Without the immunotherapy drugs, Lewis’ options will be limited to surgery or traditional chemotherapy, he said. His three children are also worried about his cancer coming back aggressively without the trial.
Last week, Lewis shared his story on a virtual press conference with VoteVets, a political action committee which began a campaign to spread awareness about veterans impacted by the federal layoffs and other Department of Government Efficiency cuts, like research, on the veteran community.
This week, Lewis plans to head to Capitol Hill to meet with advocacy groups and lawmakers on his behalf and for other cancer patients who have been impacted.
“[Johns Hopkins officials] are committed to finding a solution to this, not just me but for people that are in far worse situations than I am,” Lewis said. “I’m fortunate to live in Maryland because Maryland’s got funding that can help fill some gaps if this does go completely awry.”
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