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Kaukauna family says health care, Medicaid debate "life and death" for son with autism, cancer

Forster Family urging lawmakers to slow down
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For one Kaukauna family, changes to our nation's health care system aren't about politics.
 
Parents John and Carrie Forster say, for their son, whose cancer treatments are complicated by autism, it's a matter of life and death.
 
John and Carrie Forster say 26-year-old Alex's autism is on the severe end of the spectrum.
 
 
When Alex was diagnosed with Hodgkins lymphoma two years ago, Carrie--a middle school teacher in the Kaukauna Area School District--says she feared the worst.
 
"Because of his disability he doesn't follow directions easily. He has a lot of anxiety," says Carrie, adding her son is mostly non-verbal. "We were worried how [he is] going to handle treatment, needle sticks, [etc.], and, he's done amazingly well." 
 
Alex's fight has been made possible, according to Carrie and John, because of Medicaid coverage.
 
"His doctors have been able to make the decisions that are best for him," says Carrie. 
 
"Again, our experience has been they're working," adds John.
 
Now, the Forsters say Alex's future is unclear as Congress considers changes to Medicaid, which could slash federal funding to the program. Carrie says she's most concerned over talks about turning Medicaid into a block grants program.
 
Block grants could allow states more flexibility in the way they spend Medicaid funds, but also create a number of additional problems -- how to determine the amount of money each state receives, how to account for changes in enrollment during economic downturns, and how to regulate the way that states spend the funds.
 
"The idea that we're talking about literally putting on lifetime caps," says John, frustrated, "and limiting healthcare access to people like Alex, to me, is unconscionable."
 
Now the Forsters are contacting Wisconsin lawmakers, urging them to slow down. According to John, he wants lawmakers "to simply take some thought, and do this properly, and fully-vetted."
 
"This is our child. This is our son. This is a real person," says Carrie, "and if decisions on his care are made for political reasons, and his doctor has to say 'no, I cant treat you because you're out of money,' he will die. If he doesn't have his cancer treatment, he will die."
 
The Forsters have sent letters to House Speaker Paul Ryan, Republican Senator Ron Johnson, Republican Congressman Mike Gallagher, and Democratic Senator Tammy Baldwin, sharing their story:
 

"This is the letter we are sending to our representatives:


Dear Senator Johnson,
Dear Senator Baldwin,
Dear Congressman Gallagher,
Dear Congressman Ryan, Speak of the House of Representatives,

I am writing to you on behalf of my son, Alex Forster. Alex is a 26 year old man with autism. Alex is nonverbal and requires constant supervision. He lives in a group home not far from us and has been thriving there, thanks to the government programs that provide for his care. He lives in a home with three other young men who also have developmental disabilities and they have around the clock caregivers. Alex has a part time job and is active in the community.

Two years ago, Alex was diagnosed with cancer. He has endured multiple treatments, including more than one chemotherapy and a stem cell transplant. After several months in remission, we learned recently that his cancer is back and the battle continues. He is receiving an immunotherapy treatment that we are hoping will extend his life. Right now, he feels pretty well and the side effects of his treatment are minimal.

Alex's healthcare is provided through Medicaid. He has received excellent care at Froedtert Hospital in Milwaukee and Fox Valley Hematology and Oncology in Appleton. Due to his current Medicaid coverage, Alex's doctors have been able to make decisions about his care based entirely on his medical needs. His doctors and his medical coverage have saved his life.

We understand that congress is looking at converting Medicaid to a block grant program, and that this change may happen quickly. We implore you to not rush to making changes without thoroughly exploring the consequences of these changes. We ask you to vote no on any immediate changes and take time to carefully explore options that will protect our most vulnerable citizens.

If the decisions about Alex's medical care are made by politicians with the emphasis being on cost saving measures, and these politicians refuse or cap Alex's medical care so that he cannot get the treatment he needs, Alex will die.

Let me be clear,

 if Alex is denied treatment due to changes in Medicaid funding, he will die.

This is America, and we ought to be able to protect our most vulnerable citizens. Alex, and many others like him, are counting on us.

Thank you for your time and consideration. We will be following this letter up with a phone call to your office.

Sincerely,

Caroline and John Forster"

 

 
The Forsters are being heard.
 
Congressman Gallagher responded to NBC26's request for comment regarding the Forster's story. In an official statement, Gallagher says:
 

“As Congress works to improve health outcomes for all Americans, it’s critical to many of our citizens that the care they currently rely on is not taken away. I will continue to work to ensure our most vulnerable citizens like Alex are protected and have full access to the timely, affordable and quality healthcare that they need and depend on.”   

 
 
Sen. Baldwin also responded to NBC26's inquiries, saying:
 

“This is a perfect example of why I oppose the plans of Congressional Republicans to repeal the Affordable Care Act and cut state funding for Medicaid. I hear these voices and it is important that Republican establishment in Washington and Madison does too.”

 

 

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