Ori Spotlight #21 – The Whitehead and Jones Families, Patient Advocates

Episode 21

In this special episode of the Ori Spotlight Podcast Jason C. Foster is joined by the Whitehead and Jones families. They talk about Emily Whitehead and Opie Jones’s experiences as children accessing CAR-Ts in the UK and US, how the families hope to increase public and healthcare professional awareness of CAR-Ts, and their ultimate mission to help enable widespread patient access to precision medicines.

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What’s in this episode

  • 01:11 – Emily’s CAR-T therapy journey
  • 03:37 – Opie’s CAR-T therapy journey
  • 06:15 – The criteria for CAR-T therapy treatment in the UK
  • 07:23 – The US standard of care for cancer treatment
  • 09:08 – Emily’s ten-year cancer-free anniversary plans and the status of CAR-T in the scientific community
  • 13:37 – Lucy’s hopes for other families with children facing a cancer diagnosis
  • 16:20 – Emily’s ambition to help enable widespread patient access to CAR-T therapies
  • 18:38 – The awareness and approach to CAR-T therapies by healthcare professionals in the UK and US
  • 26:05 – The challenges that prevent families gaining access to CAR-T therapies
  • 32:23 – Tom’s hope for CAR-T therapies in the next decade

Episode summary

“For us, it’s pretty big because it’ll be the first time that the science community is going to call the treatment a cure. I think as parents, we see what our children look like, and when they look normal that’s a cure to us. But to have the science community come out and say, ‘I think there’s 6500 Kymriah patients now and it’s really unprecedented results’. To hear them come out now and say that they think it’s a cure, too makes us proud.”

A decade on after her treatment with Kymriah, Emily Whitehead is testament to the curative potential of CAR-T therapies. The Whitehead family has been active in telling Emily’s remarkable story, raising awareness, and helping families gain access to cell therapies through the Emily Whitehead foundation since 2014. Recently, they were able to help Opie Jones, a five-month-old in the UK diagnosed with leukemia.

“We were told very quickly within a few days that the leukemia he had couldn’t be treated with first line treatments. That would have been the protocol of years of chemotherapy and that he would need a bone marrow transplant. But we were also told that there was this other therapy that had just been kind of approved, but he wouldn’t be able to have that straight away.”

– Lucy Jones

It’s still a criteria that you have to have relapsed post bone marrow transplant in order to get CAR-T in the UK. It is there as a secondary treatment and it is approved for use, so there’s no issue there with it being done. However, we did find out the other day via GOSH that they’ve now got a trial for using it as first line, which is great news… Obviously, it’s still a trial and it’s still a long way off, but we know what the outcome can be. We’ve seen it and we hope we’re very hopeful that it’s going to work. Quite simply, it will become the first.”

– Lewis Jones

Healthcare providers across the world are struggling with offering approved life-saving precision medicines, with cost playing a major part in the availability of cell therapies in both the US and the UK.

“We would never explicitly say it’s because it’s too expensive. But when I went and read the kind of government’s guidelines for giving it, what it boils down to is with money… Overall when I think of bone marrow transplant, how intense that was, how long we were there for, the aftercare for him. It doesn’t to me, that doesn’t add up… If you look at overall the overall cost of caring for somebody, giving them all these treatments that have all these horrible side effects, you’re going to have to carry on caring for them.”

– Lucy Jones

“In our country what they have weekly meetings for different areas. Our consultants and oncologists will have a meeting with the oncologists from all the different hospitals in the UK, including GOSH. They do go out to Europe as well and they bring people in from Europe and they have these meetings… and they’ll discuss case by case as well without names as to whether somebody would need further treatment or if there was something else somewhere else that they could have. Or they discuss it openly between them. So they were all they were all very aware of the treatments that are out there. But they’re also very aware that they can’t just put people on it and they have to go through the hoops to get there.”

– Lewis Jones

“In the United States, it’s [bone marrow transplant] very comparable to what CAR-T cell treatments are. I can remember when we were trying to get her into a bone marrow transplant, I’m pretty sure from my memory that they told us just the search to find a match, because Emily’s an only child was somewhere in $150,000 range.”

Another barrier to patient access is the awareness of healthcare providers around cell and gene therapies. This is something that currently seems to be more of an issue in the US, meaning patients need to fight harder for CAR-T therapy treatment

“In the US, it was the parents going to the doctor and asking the doctors to research it because they were not recommending it. They didn’t really know about it. And the way it travelled is the nurses that witnessed what happened with Emily in the oncology ward and told other nurses. The nurses were going into the patient saying, ‘Go look at the Emily Whitehead Foundation and start trying to fight to get this.

– Tom Whitehead

Cell and gene therapies are still mostly used in patients who have exhausted all other treatment options. This means that alongside the detrimental effects on the quality of cells available, patients simply don’t have much time to receive these therapies. For Opie, time was critical.

“Obviously the financial side is one thing, but in terms of time. The leukemia that Opie had, an infant acute leukemia, was extremely aggressive. Time was really critical for him. From when he relapsed we were told he had less than 0.2% leukemia to within 9%. So time is so important…”

– Lucy Jones

One year on and Opie is living a healthy life as an infant, with CAR-T cells still present in his body. Emily’s hope is that from her story, the incredible work the Whitehead foundation do, and the work of companies such as Ori, CAR-T therapy becomes available for everyone.

“One of my main goals is to have CAR-T become more of a frontline treatment, especially after what you said about the effects that like chemotherapy and radiation has on a child. It’s just hard to think about whenever CAR-T exists… I would love to see it become more of a frontline treatment, especially just because it’s less toxic for a kid and gets them back home faster.”

– Emily Whitehead

For further information

Emily Whitehead Foundation

Ronald McDonald House

Addenbrooke’s Children’s Hospital





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