Transcript

The family of a Chicago woman who died after contracting a drug-resistant superbug is calling on hospitals to be more transparent about risks of infection.

Stephanie Spoor, 64, died in February after contracting the fungal superbug Candida auris at Chicago's Northwestern Memorial Hospital while awaiting a lung transplant. She had lived with lupus for years, but the infection killed her within weeks. The hospital declined to comment.

Illinois has the second-highest number of Candida auris cases behind New York and about one-quarter of the 617 cases reported nationwide, the Chicago Tribune reports.

Spoor's eldest son, Jason Spoor-Harvey, is calling on the state to end its ban on disclosing the names of facilities that have cases of Candida auris, which the Illinois Department of Public Health says exists to "protect the privacy of patients and their families."

"When there is diagnosis of C.Auris at a specific facility, that does not allow us to know where the patient acquired the infection," department spokesperson Rebecca Clark said in an emailed statement. "Thus, naming a facility where someone is diagnosed does not provide information as to where there is a risk for infection."

Here is part of Spoor-Harvey's conversation with As It Happens host Carol Off.

How did you come to learn that your mother had Candida auris?

In January, due to the lupus flare-up that she was experiencing, she'd been given a high dose of immunosuppressants and so ... she had regular blood tests done, and that blood test came back positive for the fungal infection.

And where had she contracted the fungal infection?

We retrieved her medical records on the date when her blood test came back positive, there's notes in her file that indicate the doctors believed that the most likely point of transmission was one of cannulas or the IVs that were helping her.

What did your family think when you learned that?

We didn't really know what to think. The doctor was doing rounds and had pulled my dad aside into the hall and just told him that it was bad, it bad infection, and not much else.

And so we were really in a scramble for information, you know, just trying to even figure out how it was spelled to Google search it.

And what have you learned since about what Candida auris is?

I learned that it was not a good prognosis for my mother who, as a result of the lupus flare, was going to need a lung transplant.

And so how did it affect your mom? She was waiting for a lung transplant. What effect did this fungal infection have on her?

You know, we didn't necessarily notice anything physically in the moment, and they had kept it pretty under control, symptom-wise, other than being a little bit more fatigued [and she had] a fever.

Initially they were more optimistic because a strain that had been identified in previous cases at Northwestern had been responsive to a specific drug cocktail.

My mom's case was not responsive.

Any time the medication was able to fight a little bit of the infection, her blood would become re-infected.

Jason Spoor-Harvey, left, poses for a picture with his mother. He has been advocating for greater health-care transparency ever since his mom died from fungal infection in a Chicago hospital. (Submitted by Jason Spoor-Harvey)

Good heavens.

Yeah, it made it impossible for her to have a lung transplant.

Would your mom have even gone to Northwestern Memorial Hospital if you had known that they were dealing with this outbreak of Candida auris?

I think the point at which we would have questioned staying at Northwestern is when they came in and said, "We are going to have to give her a very high-dose immunosuppressant."

And at that point, if we had the knowledge of what this infection was and how it impacted institutions and people, that is the point at which we may have made a different choice.

So your mother was taken off life support in the middle of February. She was 64 years old.

She was running three miles a day and chasing down my three-year-olds only two months before.

Spoor with her husband Greg. (Submitted by Jason Spoor-Harvey)

What was she like?

She was really a wonderful person. She was a preschool teacher.

She raised four boys, and I think all of us would say that we are adults who would consider our mom our best friend. So I think that speaks volumes.

I know you're speaking out now because you want the public health system to deal with this, to be transparent about what's going on. How optimistic are you that that can happen?

I want to be optimistic, but I know that these health-care institutions are operating with their profit in mind and their money is driving their decision, because no institution wants to be known as that infection centre. And the [Illinois] Department of Health is supporting that choice.

And so to get those two entities to agree that transparency is more important than perhaps some profits, I am not hugely optimistic that that can happen.

But I'm going to keep doing it because there has got to be some good that comes from this craziness.

Written by Alison Broverman with files from The Associated Press. Produced by Morgan Passi. Q&A has been edited for length and clarity.