AHCA Stories: “This is about real people’s lives.”

In the wake of the House passage of the American Health Care Act, I spoke with one individual whose life would be deeply impacted by the AHCA becoming law. The following transcript has been lightly edited and annotated for clarity.


Q:

Let’s start with some background. What’s your full name, where are you from, what do you do? Tell me a little about yourself, your family, etc.

(Justin Passage):

My name is Justin Passage and I am from the Metro Detroit area in Michigan, I am the IT director of a non-profit that provides care for people with developmental disabilities. My wife and I have been married for 10 years and I am the proud stepfather to our son who just turned 24. She is 50 and I am 38.

Q:

What’s your wife’s name?

(Justin Passage):

Tanya but she prefers to go by Shelley.

Q:

Okay. Let’s talk about why you’re concerned about the American Health Care Act that just passed the House.

(Justin Passage):

Okay. My wife has always had a nebulous auto immune disorder. She has a diagnosis from a long time ago of chronic fatigue. So insurance was never easy to get for her. Mostly it just manifested in bouts of tiredness until about three years ago.

Three years ago she started to lose her balance. It started as a minor thing but got worse. Due to the ACA, we were able to get her insurance and a diagnosis.

As we went to doctors after the ACA, she was diagnosed with a large acoustic neuroma. [Editor’s note: this is a noncancerous tumor that presses on the main nerve leading from the inner ear to the brain, causing nerve damage, resulting in impairment.] It was at the point where it was life threatening. Even during the time it took her to get diagnosed, she had regressed down to not being able to walk at all.

She had successful surgery on April 12th 2016, but there have been a lot of ancillary and new diagnoses after that. At this point she has about six to seven different conditions diagnosed. Without a pre-existing conditions clause and the ability to not allow that to affect premiums, we’d be at over double my take home pay at least in premiums.

Q:

Let’s talk about insurance specifically. The AHCA seems set to take us back to the era before the ACA was passed in 2010; how long before that did Shelley have this diagnosis of chronic fatigue, and how did that affect her ability to get or pay for health insurance?

(Justin Passage):

She was not able to get insurance that she could afford with that diagnosis. She had that diagnosis for at least 30 years if I am correct on the dates.

Q:

So she had basically no insurance for most of her adult life?

(Justin Passage):

When I met her she had no insurance. She did not get insurance until the ACA passed, because we could never find insurance that would cover her for anything affordable.

Q:

How did that impact her ability to pay for healthcare?

(Justin Passage):

My job has really bad insurance because we are a non-profit, so there is no employer donation for spouses and the costs before the ACA were very high.

Q:

Would you pay out of pocket for things like checkups and preventative care, or would Shelley just go without?

(Justin Passage):

She mostly went without. If there was an emergency we paid out of pocket.

Q:

That must have been very difficult not knowing if you were going to suddenly take a big financial hit like that.

(Justin Passage):

It was.

When she lost her hearing in her ear, which was a sign of the tumor, the clinic doctor told her he could see nothing and that it was a latent viral infection.

Q:

Wow. So because she didn’t have access to better healthcare, she was misdiagnosed?

(Justin Passage):

Yes. After getting on an insurance plan she was also diagnosed with rheumatoid arthritis, which the doctor said was what the chronic fatigue should have been diagnosed as. [Editor’s note: rheumatoid arthritis is a chronic inflammatory disorder which causes joint pain, joint deformation, and worse in advanced cases.]

Q:

Those are both problems that get worse over time if they go untreated, right?

(Justin Passage):

Correct. According to the neurosurgeon the tumor was months away from killing her.

If she loses her insurance because premiums are in the 100k+ range for all her pre-existing conditions, she will not be able to get her MRIs. They took most of the tumor out, but there is a very small bit left. As of yet is has not grown, but it could. She needs yearly MRIs to watch it.

Q:

If it does start to grow again, she’ll need another surgery?

(Justin Passage):

Yes. Because it would grow unchecked like the last one in the same way

Q:

What about her arthritis, does she get regular treatment for that?

(Justin Passage):

Yes. Right now they are trying to find the right balance of medications. They are getting closer but left untreated she is in a lot of pain. To do the operation on the tumor they had to megadose her with steroids; so when the steroids wore off it caused the RA [rheumatoid arthritis] to come back worse than it had been. That level of pain keeps her from doing her PT [physical therapy] exercises and she loses progress on her mobility.

Q:

What kind of symptoms does she experience from these issues, and how do they affect her ability to live a normal, productive life?

(Justin Passage):

She has palsy in half her face, her right hand shakes and she just got off the cane. She has vision issues due to complications with that eye not closing right and a corneal abrasion. There might also be nerve involvement in the vision. She lost total hearing in her right ear. She is legally blind.

There’s a decent amount.

Q:

Which side was the tumor on?

(Justin Passage):

It was on the right. It began in the ear canal and grew out and got tangled in the nerve cluster. A lot of her issues are down to the fact that most of her major nerves were impacted.

Q:

Let’s go back to the insurance side of things. Do you remember when after ACA she was finally able to get affordable insurance coverage?

(Justin Passage):

It was one year out. She had a distrust of Insurance and the medical system after trying so long to try and get something affordable. So almost one year after the ACA took effect we got her on a plan, so the second open enrollment.

Q:

Did she go through the exchanges or did she get on yours?

(Justin Passage):

Exchange. My insurance is really bad, and at that point her health was declining pretty fast. We would have paid a lot more had she been on mine even with the ACA mandated plan.

Q:

Do you remember which level of plan she got? Bronze, Silver, Gold, and Platinum are I think the categories.

(Justin Passage):

Silver.

Q:

What was that monthly premium, roughly, if you remember?

(Justin Passage):

$403-404.

Q:

And she’s still on that plan?

(Justin Passage):

No. That plan discontinued and the new plan they said was comparable was anything but. They sent a list of new things they were no longer covering. Out of 10 items, four of them were things she had had done.

So we changed plans. 10% increase. We pay $441 now. Less is covered outright. It’s been a struggle even under the ACA, but it’s better than her not getting an MRI and the tumor growing unknowingly.

Q:

The AHCA gives states the right to ask for a waiver from the pre-existing conditions protections of ACA that force insurance companies not to charge more for individuals who have those conditions. How much would Shelley’s premiums rise if your state received that waiver under AHCA?

(Justin Passage):

It would be anywhere from 100k on the low end up to 175k on the high end.

Q:

Per year?

(Justin Passage):

Yes. Depending on how they classify the tumor, and how precancerous polyp classifies as well. Because they found that when she was in for the brain tumor and removed it. They saved her life twice.

Q:

What would you and Shelley do if that came to pass?

(Justin Passage):

We have multiple plans depending. We could get divorced and remarry so it’s a qualifying event for my work insurance. Which would at least be something. It would be out of pocket over $500 though.

If that insurance also has the pre-existing conditions problems, we might have to get divorced and have her move in with her mom. I really think that’s the nuclear option. It would keep her alive, though. Because she could get SSI then, and Medicare. We could just pay out of pocket for diagnostic stuff, but if it did grow I do not know how we’d pay for another surgery.

None of these are good options.

Q:

What does an MRI go for out of pocket, do you know?

(Justin Passage):

About $800 I believe. But we’d also have to figure out the RA [rheumatoid arthritis] stuff. Some of the medicines for that can really be expensive. The oral she’s on is only kind of working and they might move her up to an injectable. Without a Doctor’s visit she couldn’t get that.

Q:

What do you want out of health care reform, broadly speaking? Do you want to see the ACA’s issues fixed? Would you rather see us move to single payer?

(Justin Passage):

I believe single payer is the best option but at the very least I would like to see the ACA fixed.

Q:

Were you bothered by how the House passed this, on a short notice and without a score from the Congressional Budget Office?

(Justin Passage):

Yes. I tried to contact my Congressman and couldn’t. His phone went straight to a full voicemail all morning. I then sent an email saying how much this would hurt my family and to not do it. This was ignored. I was very upset that not only did he not listen to the people he is supposed to represent but he also did it on flimsy knowledge and party loyalty. That is not how someone who is supposed to represent you should act.

Q:

Who is your representative?

(Justin Passage):

David Trott, Michigan 11th.

Q:

How do you feel about this overall? Are you hopeful about the future of healthcare in this country?

(Justin Passage):

I am very upset right now. I would like to believe that it can be made better but I do not see how that happens before 2020. I believe if Trott and some of the others who voted this in are gone we might be able to maintain something until then, though. We eventually have to have the discussion of why we are the only Western country without single payer.

Q:

Before we conclude the interview, is there anything else you would like to say to our readers?

(Justin Passage):

I just want people to know that this is about real people’s lives. I wake up every morning next to a woman who has fought and survived and if she goes out because some rich people want a tax cut and we have an irrational fear of socialism, that is a sad indictment on our society as a whole.

Q:

Justin, I want to thank you very much for your time and for sharing your story with us. You have my sympathies for Shelley’s suffering and yours, and for what this political process has put you through.

(Justin Passage):

Thank you. I appreciate the opportunity to share our story with you and your readers.

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