Gil Lykens’ Story: Exhibit A in the Case for Preserving Medicaid


March 14, 2017

Editor’s note: Congress is considering repeal of the Affordable Care Act, and is debating major structural changes, and perhaps significant cuts, to Medicaid, which serves 74 million Americans. Voices for Human Needs is reaching out and telling the stories of those who could be harmed if the ACA is repealed without a suitable replacement or if Medicaid is significantly scaled back.
Many Americans following the debate in Congress over health care reform might understandably be confused when the topic of Medicaid comes up. Some might wonder who gets Medicaid, what it covers, how many people qualify. Others may hear phrases like “block grants” and “per capita caps” and tune out completely.

If they learned of Gil Lykens, they may not tune out.

Gil is the 17-month-old son of Craig and Lindsay Lykens of Ashburn, Virginia. He has a rare neuromuscular condition called Myotubular Myopathy (MTM), which causes his muscle cells to “build” improperly because they are missing a key protein. This, in turn, causes Gil to have low muscle tone across his entire body, affecting everything from limbs to lungs to his esophagus.

Twenty-four hours a day, seven days a week, he receives breathing assistance from a ventilator through a tracheostomy tube, and is fed through a g-tube that connects with a port into his stomach. He recently began eating very small amounts of baby food purees. He is currently not able to speak, but has begun learning ASL for communication.

Craig and Lindsay might be described as a typical American family, if there is such a description. He is the assistant manager for a nonprofit in D.C.; she works as the executive assistant/office manager for a security firm in Northern Virginia. Through Craig, they have employer-based insurance. It is good. But for parents of a youngster with Gil’s conditions, it is not enough.

Enter Medicaid of Virginia.

This program, largely with the help of federal funding, covers most of the costs denied by private insurance: Gil’s therapies and therapeutic equipment, many of his medical supplies (many of the medical machines as well as supplies like gauze and wound cleanser needed for infection control), and 16-hour-a-day nursing, so that Craig and Lindsay can keep their jobs and get some sleep at night.

Lindsay explains that the latter could literally be life-preserving. Gil requires 24-hour-a-day observation because of his trach and ventilator, and his risk of oxygen desaturation if his trach were to become blocked.

“If we had no nursing or reduced nursing, that means one of us would need to be at home with Gil all day, and one of us would have to be up with him all night,” Lindsay explains. “Any parent will tell you that being exhausted and having a baby/young child at home is hard enough, but in Gil’s case, it could be fatal if one of us were to fall asleep while caring for him. We also would not be able to afford the medical machinery that keeps Gil alive, and even if we took him to a rehab institution or re-admitted him to the hospital, we wouldn’t be able to pay to keep him there for very long.”

The link between health coverage and financial solvency for many Americans has been well-established. In the case of the Lykens family, one simply cannot exist without the other.

“If the Affordable Care Act is repealed and Medicaid funding is cut/block-granted/capped, I honestly don’t know what we would do,” Lindsay says. “We would very quickly go into medical bankruptcy and lose our home. If our home nursing hours were reduced or completely erased, one of us would have to quit our job, which would further jeopardize our financial situation, and would honestly put Gil in very great danger. We count on, and trust, our nurses to care for Gil when we are not there (or are asleep). I don’t mean to sound dramatic, but I’m honestly not sure how we could keep Gil safe and alive if we were to lose Gil’s primary insurance or secondary Medicaid coverage. This is terrifying and deeply upsetting to think about, but it is a very real concern for my husband and me.”

Lindsay is somewhere between realistic and optimistic when it comes to her son’s prognosis. On the one hand: People with MTM rarely live beyond their 20th birthday. On the other hand: a breathtaking scientific breakthrough could be in the near future. Lindsay describes a recent clinical trial where dogs with Gil’s condition were treated with one dose of medication. “They were able to begin walking and running within about a month. After about a year, the dogs were just as strong (both in terms of physical and respiratory strength) as any other dog their age. If this treatment is anywhere as successful in humans as it was in dogs, this would completely change what is possible for Gil and other children like him.”

“Our dream for Gil is that he will be happy and loved, and be able to live his life to the fullest potential,” Lindsay says. “With the treatment options that are available today, he will likely be wheelchair-bound, breathing with a trach and ventilator/ and eating through a feeding tube, but we are bound and determined to give him the best and happiest life possible.”

Lindsay and her husband Craig might be in a better position than most Americans to influence the outcome of the ongoing health care debate in Congress. Why? Because they live in a “swing” district – Virginia’s tenth congressional district, which takes in parts of Virginia’s northern suburbs and exurbs. The district currently is represented by U.S. Rep. Barbara Comstock, a Republican currently serving her second term. As a swing district, both Democrats and Republicans can be expected to target the seat every election cycle – meaning the current incumbent could be more open to persuasion than many members of Congress when it comes to preserving essential programs such as Medicaid.

So what would Lindsay say to Rep. Comstock and to other members of Congress?

“If a per capita cap or block grant system is put in place, Medicaid programs across the country will be faced with huge budget shortfalls that will increase year over year. States will begin to add or increase waiting lists for Medicaid, eliminate waiver programs (like the Virginia Assisted Technology Waiver that Gil benefits from) and cutting Medicaid benefits. Given a few years under a per capita cap or block grant program, there is a very strong possibility that a child born with a condition like Gil’s would never be able to go home, which is absolutely heartbreaking.”

Lindsay continues:

“Please understand that ACA benefits everyone, the healthy and the sick among us. Please don’t penalize people, like my sweet boy, for being born with a rare condition and special medical needs. As a society and a country, it is our responsibility to care for the sick and the disabled, and make sure they are treated fairly and have access to the same medical care and support that healthy people do. Life might be a challenge sometimes with my son, but we wouldn’t trade it for the world, and I couldn’t imagine my life without him.”

Do you have a health care story you’d like to share with Voices for Human Needs? Do you know someone who depends on the ACA or Medicaid for health care coverage? We’d love to hear from you! You can share your story here.

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