Taylor Wilson feels heard after meeting with reps about her son's Medicaid dependence
Taylor is still flummoxed and upset that she can’t get a response from people like Tony Wied and Ron Johnson – the people who are threatening her son’s health and survival with their willingness to cut off his essential needs.
This story is a follow-up to a feature that ran on Feb. 22
When Taylor Wilson isn’t working or taking care of her son’s special needs, she is relentlessly advocating for him.
That advocacy, as described in a recent story here, currently takes the form of imploring her representatives to fight to save Medicaid from the nearly $1 trillion in cuts the GOP budget bill calls for.
Taylor’s son, Oliver, has a remarkably rare disease called Nephropathic Cystinosis, which requires nearly $70,000 monthly for the medicine that sustains him. Oliver will also require multiple kidney transplants throughout his life.
Taylor has a team of friends and family and a folder full of documents ranging from education about NC to letter templates to politicians.
It was only recently, though, that Oliver’s story started gaining traction. Just not from the very people who are holding the axe over Oliver’s Medicaid lifeline. Taylor has yet to hear from Sen. Ron Johnson and received only a proforma letter from Congressman Tony Wied with vague assurances about Medicaid that were overshadowed by ominous warnings about Medicaid fraud and waste.
In other words, she’s not getting any sense that two of her main federal representatives are taking Oliver’s plight very seriously.
But two weeks ago, Taylor did hear from one of her representatives in Washington, Sen. Tammy Baldwin. Baldwin has always made health care a key plank in her platform, having required Medicaid when she was a sick child.
“I would say that Senator Baldwin has taken this issue under her wing,” says Taylor following a phone conversation with the three-term senator. “And it’s clear she’s interested in what her constituents have to say and she was very empathetic. She said we’re in this fight. She said, this is for Oliver.”
(Click on arrow to hear is a snippet of Sen. Baldwin's conversation with Taylor)
Baldwin posted a video of a snippet of that conversation with Taylor on Facebook next to a photo of Taylor holding Oliver.
“Republicans are planning to rip away healthcare from more than one million Wisconsinites on Medicaid—all to pad the pockets of their wealthy friends,” Baldwin said in an email response to The Dairyland Patriot. “Behind these numbers are very real people whose lives will be drastically impacted if they lose their health care—like Taylor who relies on Medicaid to keep her 2-year-old son Oliver alive.”
The Medicaid issue has millions of people up in arms as it is a lifeline for 72 million Americans and their families. It has been such a hot-button issue that Republicans in Congress have been told to stop holding town hall meetings with their constituents. They are also attempting to hide behind the fact that there is no direct language, per se, that refers to Medicaid cuts. But the House Committee for Energy and Commerce is charged with slashing its budget by nearly a trillion dollars and Medicaid is the lion’s share of its budget.
The question becomes: What of Oliver and his needs? Do those survive such drastic cuts? There’s little sense that the GOP has much of a plan for where the cuts might come. This is in line with the willy-nilly approach the administration seems to be taking toward gutting government institutions and personnel.
“I can’t get answers,” Taylor says. “I think (Wied) doesn’t have much to say to parents like me. And that says loud and clear, we don’t care about you or your family. You’re not on our radar. And that’s alarming.”
Baldwin’s office, on the other hand, responded within a week, asking for more information, videos and any links to Oliver’s case. Taylor included The Dairyland Patriot’s feature on Oliver and his illness. And a week later, Baldwin called Taylor.
"Without Medicaid, families like Taylor’s across Wisconsin will be forced to make impossible decisions just to get their loved ones the lifesaving care they need," Baldwin said. "It’s wrong and I will keep fighting against these harmful cuts to a lifeline that countless Wisconsinites rely on.”
Medical community deeply concerned by GOP policy
In the meantime, Taylor had also reached out to her state representative, Lee Snodgrass, who had already heard from Taylor’s sister, Baily. The two of them met Rep. Snodgrass during one of her Appleton office hours.
“It's been tough as a state legislator wanting to help but knowing these are federal issues,” Snodgrass said. “I do what I can with the tools at my disposal: rallying public attention via media, uplifting their stories to our federal partners, and looking for small ways the state budget may help be a tourniquet. But mostly, people are just grateful for a compassionate ear. Listening is powerful. And it’s the least we can do.”
Taylor was due to speak to The Recombobulation Area, a substack that deals with issues in the state, as well as with a freelance writer who has written for the NY Times. This is all Taylor has wanted – to get Oliver’s story out there and to be heard.
Taylor says see in the faces and attitudes of Oliver’s medical care team the impact of the administration’s cuts to critical-needs programs like Medicaid.
“People in what I call ‘the medical kiddo community’ – the parents and doctors and nurses and geneticists – are very much worried,” Taylor says. “These aren’t political people but they are seeing what this administration wants to do to our kids or without regard to our kids. They have always been neutral but they are very worried for his future and for kids like him.
“They don’t pity Oliver but they know where the flaws and weak points and the holes in the (health industry and health insurance) are and they are very concerned about how (Medicaid) cuts will affect patients across the board.”
Taylor is still flummoxed and upset that she can’t get a response from people like Tony Wied and Ron Johnson – the people who are threatening her son’s health and survival with their willingness to cut off his essential needs. But she has been heartened by the responses of Sen. Baldwin and Rep. Snodgrass.
“Yeah, I would say feeling seen and heard by the people who are elected by the people and for the people really helps light a fire under me for the fight we have ahead of us,” she says. “It means we’re making some waves so that the people who are in the decision-making rooms are hearing our voices.”
Neither Ron Johnson’s nor Tony Wied’s office responded to a request for comment.
