Video: Wisconsin Mom Testifies at Senate Hearing on Affordable Care Act, Shuts Down Ron Johnson for Attacking ACA Coverage of Pre-Existing Conditions
[WASHINGTON, DC] – Today, Shana Verstegen, a mother of two from Madison, Wisconsin, testified at a hearing in the U.S. Senate Permanent Subcommittee on Investigations (PSI) about the importance of extending enhanced premium tax credits for millions of Americans with Affordable Care Act marketplace plans. As Americans brace for a looming health care crisis that will put millions at risk of going uninsured, Republicans on PSI held a hearing today further seeking to undermine the ACA.
U.S. Senator Richard Blumenthal (D-CT), Ranking Member of PSI, invited Verstegen to serve as the Minority’s witness and share her story about how the enhanced premium tax credits help her family afford health insurance.
“I’m here today as a proud user of the Affordable Care Act and the health care marketplace. Like so many other working families, I don’t know what my family would do without it. My husband and I both work in the fitness industry as trainers and fitness instructors at a wonderful small gym in Madison. We love our jobs and work very hard helping others on a daily basis. We have been employed there since high school—so almost 30 years,” Verstegen said.
Verstegen continued, “We are currently paying $460 each month for our family of four. Without the enhanced premium tax credits, our premiums are projected to increase to an unaffordable $700 a month in 2026. Losing enhanced premium tax credit support would create a real crisis for my family. Trust me, we’ve cut back on spending in every way we know along with adding lots of additional work hours to both of our schedules.”
In her testimony, Verstegen discussed how she became an advocate within the Huntington’s disease community after her mother was diagnosed with, and later passed way from, the disease. In an exchange with U.S. Senator Ron Johnson (R-WI), Chairman of PSI, Verstegen called attention to how the ACA helps individuals with pre-existing conditions, such as Huntington’s disease, access affordable health insurance, “I do know that the Affordable Care Act is the only option for coverage for my family. It’s the only option for coverage for Huntington’s disease families, for entrepreneurs. And I would really hope that lawmakers would work together to help reign in this corporate spending to help bring that down, and quite honestly, yes, the premiums are going up but so is my gas, so is my electricity, so are my grocery prices. And I don’t feel like the answer to this is to increase our premiums more. I know you said this is Democrat sponsored, but Republicans and everybody have the power to pass this extended premium tax credit, so our bills don’t go up even more. I’m not here to fix this today, but please help us for 2026.”
After Johnson suggested that the ACA’s coverage for pre-existing conditions has driven up premium prices for people like Verstegen and suggested that people with pre-existing conditions should instead be put in a “high-risk pool,” Verstegen said, “Respectfully, Senator, if I had tested positive for Huntington’s disease, what would my option have been then? I wouldn’t have had an option.”
A video of Verstegen’s testimony and her exchange with Johnson is available here. The full transcript of her testimony and exchange with Johnson is available below.
Ms. Verstegen: Good afternoon, Senators, and thank you for the opportunity to share my family story today. My name is Shana Verstegen, and I live in Madison, Wisconsin with my husband and our two wonderful little boys who are seven and 10 years old. I’m a proud member of Moms Rising. I’m here today as a proud user of the Affordable Care Act and the health care marketplace. Like so many other working families, I don’t know what my family would do without it. My husband and I both work in the fitness industry as trainers and fitness instructors at a wonderful small gym in Madison. We love our jobs and work very hard helping others on a daily basis. We have been employed there since high school—so almost 30 years. Due to the small number of full-time employees at our gym, the owners don’t provide us with health insurance.
So, we purchased health coverage for our families through the ACA marketplace for many years. We are currently paying $460 each month for our family of four. Without the enhanced premium tax credits, our premiums are projected to increase to an unaffordable $700 a month in 2026. Losing enhanced premium tax credit support would create a real crisis for my family. Trust me, we’ve cut back on spending in every way we know along with adding lots of additional work hours to both of our schedules. We rarely go out to eat. We haven’t gone on vacation in years. And for 2026, we are looking at scaling back some of our children’s sports and other activities our kids enjoy.
With the threat of the subsidy ending, we’re exploring all of our options. My husband is even considering finding another job that offers employer-sponsored health coverage. That’s been really emotional for us because although we are certainly not above working at a large realtor like Costco, it would mean setting aside the skills he went to college for and work that we truly love.
We are also considering shopping for a cheaper plan, most likely with a higher deductible, but that’s risky for our financial stability. We also did talk about not being covered at all but with two kids, that didn't sound like a safe choice for our family. These options and decisions are tough, and quite frankly, really scary. We’re middle-class healthy, hard-working family. And like so many others, we are struggling to make ends meet with the prices for food, housing, clothing, electricity, and everything else skyrocketing.
The prospect of our health insurance increasing by several hundred dollars is devastating for us. It will be a major financial blow to our family. This truly doesn’t feel like it’s about politics or polling or winners or losers in congress, families like mine in every state—Red states, Blue states, everywhere in between, rely on the Affordable Care Act. This is about real families, real kids, and real health.
Speaking of health, I grew up with a mother who had Huntington’s disease, a devastating neurological disorder. Living at risk of inheriting it myself I spent years fearing I would never be able to obtain health insurance. Although I ultimately tested negative for the disease, the Affordable Care Act gives me peace of mind that I will be covered no matter what health challenge I or my family may face. Sadly, many in the Huntington’s disease community who have become like family to me did not receive that same test result. At our state chapter convention last weekend in the Wisconsin Dells, there was so much to celebrate. Just over a month ago, new research identified a potential treatment, a really big moment of hope for our community. But that hope was shadowed by fear. Many families expressed deep concern that the Affordable Care Act may be overturned and they may lose access to the essential health care that they depend on.
None of these individuals did anything to deserve the genetics they were delt. And they too deserve affordable, reliable health care, just like everyone of us. The Affordable Care Act is essential for entrepreneurs and small business employees like myself to afford health care coverage. The Affordable Care Act is essential to those with pre-existing conditions like Huntington’s disease to afford health care coverage.
The Affordable Care Act enhanced premium tax credits are essential for millions of Americans to be able to afford health care coverage. I am here as an example of the people who you all represent. I am a working middle-class mom speaking for 24 million other Americans who rely on the affordable care act to keep children healthy, their bills manageable and their future secure.
I ask you sincerely and urgently to stand with us and support the families who need you now more than ever.
Chair Johnson: Thank you, Ms. Verstegen. I will start with questioning. I purchased health care in Wisconsin for my smaller business, about 30 years. And it was quite a few years before we got over 100 employees, so I’m very familiar with the small employee market. We actually had for one year when the companies were really trying to buy shares, we had zero-dollar deductibles. Literally everything was covered. There was no deductibles, there was nothing. I think next year they raised premiums 40%, we had to switch over. But we were talking about $100 deductible per person with out-of-pocket maximums of a couple thousand. I think when I left in 2010, the most I ever remember was a couple deductibles, $2,500 per person, with an out of pocket max of about $5,000. That is off the top of my head, but again, nothing like you are describing right now. So I would like to, and again, I appreciate you working with the staff trying to fill in the details here, but just would like to get a feel for what your current situation is and kind of where you’ve been in terms of health care.
So, going back to 2013, I’m showing you the rate of increase since the implementation of Obamacare, what kind of insurance did you have in 2013?
Ms. Verstegen: Yeah, in 2013 our gym was a little bit larger. It’s a racquetball gym, so I don’t know if any of you play racquetball, you probably don’t know many who do, therefore, it has gotten to be much smaller. And back in 2013 we did have employee sponsored health care at that time.
Chair Johnson: So you did have employer-sponsored health care. Did you contribute anything to it?
Ms. Verstegen: I did. And it was actually –
Chair Johnson: And I don’t expect you to, do you remember approximately how much –
Ms. Verstegen: No, I sure can, and I remember this because my husband and I weren’t married yet and because I was a female of childbearing age, I paid almost $600 a month –
Chair Johnson: Okay.
Ms. Verstegen: And he had to pay under $200 per month and we found that really unfair. So it was actually, even though it was employee sponsored, it was still quite unaffordable.
Chair Johnson: So then, 2014 and 15 you are also on employee sponsored care, correct?
Ms. Verstegen: Yes –
Chair Johnson: It was the same one?
Ms. Verstegen: Yes.
Chair Johnson: Similar types of rates?
Ms. Verstegen: Yes.
Chair Johnson: So, you, again, were paying about $600 a month?
Ms. Verstegen: Yes. I can’t give you, I apologize, I don't have the exact numbers on me.
Chair Johnson: So in 2016 your employer no longer covered employees. So you end up having to get your insurance through the Obamacare exchanges. Next thing I have is in 2019, you are paying $1,000 month for a silver plan?
Ms. Verstegen: In 2019, I don’t know if it was a silver plan, I know it was a higher tier plan than we have right now.
Chair Johnson: That you chose?
Ms. Verstegen: Yes, I chose a higher plan, and it was about $1,000 per month.
Chair Johnson: Do you remember what the deductible was, and by the way do you have deductibles and out-of-pocket maximums? Is that how that works on your exchange?
Ms. Verstegen: This year I don’t have deductibles, I have fairly high co-pays and an out-of-pocket maximum. I do not remember what my deductibles were in that year that I was paying about $1,000, but I know they were significantly less than they are now. We have a lower tier plan now.
Chair Johnson: Because now you saw you switch to the bronze plan, that was $250 per month, but you said that I’m assuming it’s the out-of-pocket maximum of $14,000 or is that just a deductible of $14,000?
Ms. Verstegen: The $14,000 I believe that was an out-of-pocket maximum. It’s not $250 a month. It’s $460 per month.
Chair Johnson: No in 2021,
Ms. Verstegen: In 2021 –
Chair Johnson: It was $250 a month.
Ms. Verstegen: Okay, yeah. Yes, when we dropped to that lower tier plan, yes.
Chair Johnson: And you were getting subsidies back then?
Ms. Verstegen: I don’t believe so.
Chair Johnson: Back in 2021, you weren’t qualifying for subsidies?
Ms. Verstegen: I can’t recall.
Chair Johnson: Okay, I would think paying $250 a month, you probably were. Can we put up this next chart? And I’ve got this sheet in front of you. I’ve tried to cobble together what I think was representative of the kind of plan you are on. I’m not saying that this is yours, but this will be somewhat similar. This was the bronze plan. So, for 2025, you’re saying that the net premium is 460, and I know in your House testimony, you had a subsidy of 800, so your gross premium was 1,260 a month. So on an annualized basis, that’s $15,000 gross premium, you got a $9,600 subsidy and you paid $5,500. Okay. Now, in Wisconsin, we’re actually not the national average is 26% increase year. We actually are about 17%. I did this based on 2026. So assuming the national average growth increase, your total annual premium is going to go from $15,000 to about $19,000, is that about what you are seeing? Probably a little bit less than that. It’s probably a little less than that –
Ms. Verstegen: A little less.
Chair Johnson: Because in Wisconsin, our average is about –
Ms. Verstegen: A little less than that, yeah.
Chair Johnson: Somewhere around $18,000 or $19,000.
Ms. Verstegen: Yeah.
Chair Johnson: You are saying that you are going to be paying $700 per month. So that translates to $8,400 annually, correct?
Ms. Verstegen: Yes.
Chair Johnson: Times 12.
Ms. Verstegen: Yes.
Chair Johnson: So that means you will be getting a subsidy still of $10,600 roughly, about $10,000 subsidy.
Ms. Verstegen: No my subsidy is $420.
Chair Johnson: If your premium is 18-19,000, you’re paying $8,400, you’re going to get about a $10,000 subsidy even with the enhanced subsidies going away—the temporary subsidies. Let me explain.
Ms. Verstegen: Yeah, enhanced was much more than that. Now it would go down to 400.
Chair Johnson: The last column is, what I did was I deflated the $19,000 back to 2013. That gives us $8,500 is what your premium—similar type of plans would have been before the ACA. Then if I reinflate it based on employer-sponsored insurance going up about 64%, your premium should be less than $14,000. That is a $5,000 difference. Now if you inflated based on inflation 39%, you’d be saving about $7,500 in premiums. So again, I’m just laying this out. This is what’s happening. So, there’s no reason for a plan like yours to cost $19,000 per year. But even with the enhanced temporary subsidies. And again, we’re not the ones that set those to expire, that’s what the Democrats did. Even with those subsidies expiring, again, you will still be getting about 10-11,000 subsidy. The problem is the premium, the gross premium, and that is being – and we’ll talk about this later with our other witnesses – that’s Obamacare’s faulty design. The fact that it forced all of the individuals like you, in these individual policies to bear the full cost of covering people with pre-existing conditions. Prior to Obamacare, in Wisconsin, we had something called high risk pool, it worked great. Now it wasn’t perfect, we could’ve tweaked it to make sure everybody with pre-existing conditions were covered, but Obamacare did away with those and put that full cost of covering people with the pre-existing conditions on the backs of people like you. That’s why health care primarily is so expensive on the individual exchange. Many other reasons, but we will get that to with witnesses.
Ms. Verstegen: Is this a—can I answer?
Chair Johnson: Sure.
Ms. Verstegen: I know it wasn’t exactly a question, but again, I’m not here to speak on—I’m clearly not an expert on why the co-pays and why the premiums and everything are rising, but I do know that the Affordable Care Act is the only option for coverage for my family. It’s the only option for coverage for Huntington’s disease families, for entrepreneurs. And I would really hope that lawmakers would work together to help reign in this corporate spending to help bring that down, and quite honestly, yes the premiums are going up but so is my gas, so is my electricity, so are my grocery prices. And I don’t feel like the answer to this is to increase our premiums more. I know you said this is Democrat sponsored, but Republicans and everybody have the power to pass this extended premium tax credit so our bills don’t go up even more. I’m not here to fix this today, but please help us for 2026.
Chair Johnson: The reason this is your only option is Obamacare made it your only option. The reason you can’t afford it is because Obamacare made premiums skyrocket. So again, it doesn’t make any sense to throw hundreds of billions of dollars to hide and mask the faulty design of Obamacare. I’m happy, I would be more than willing to sit down in good faith to work with Democrats to repair the damage done by Obamacare and transition to a system that actually keeps costs down, but again when you’ve gone from an insurance policy that was somewhere around $8,000 before Obamacare, to now it is $19,000, four times more the rate of inflation. Yeah, everything is up 39%. Obamacare rates are up 169%. I forgot the exact figure. Again, it is a faulty design. And with that I’ll turn it to –
Ms. Verstegen: Respectfully, Senator, if I had tested positive for Huntington’s disease, what would my option have been then? I wouldn’t have had an option.
Chair Johnson: Again, we what would’ve done is high-risk pools, we would’ve had guaranteed you within those. The cost would have been spread over everybody. That’s the way it was originally. Everybody, everybody participating –
Ms. Verstegen: My friends who tested positive were not able to afford a plan.
Chair Johnson: Had a small percentage onto their insurance and it paid for the high-risk pools. It worked marvelously, but Obamacare outlawed that. But anyway, Senator Blumenthal.
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