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Advocating for Access to CLL Treatments

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Published on January 31, 2020

Key Takeaways

  • Advocate for the best CLL care available to you.
  • Learn about the power and strategy of entering a clinical trial.
  • Testing is critical to determine what type of CLL you have, to ensure you are getting the proper care.

Chronic lymphocytic leukemia patient and advocate Deborah Sims shares her experience advocating for clinical trials for herself and others spanning the entire globe. Deborah has fought to have access to the life-saving treatments she has had, and continues to fight so others will also have access. Watch as she shares the twists and turns of her own CLL journey and what she hopes will come for patients like her in the coming years. 


Transcript | Advocating for Access to CLL Treatments

So, Deborah, first of all, thank you for being here. 


So, I had FCR; was very sick when I had FCR, and it actually made me really well.  And after the first cycle I was like, why didn't I have this earlier?  And my doctors said, well, holding their heads in their hands saying, we told you.  We told you.  Anyway, three cycles of FCR, relapsed.  They hoped I would get five years out of FCR.  I got six months. 

And so, I came to America with my doctor's permission, saw Dr. Tom Kipps.  He was amazing.  I emailed him and said, would you see me—I'm about to have a transplant, would you see me if I come to America, and he said, I can put in clinic next Wednesday, see you then. 

So, I flew, you know, 15‑hour flight from Melbourne to LA, down to San Diego, saw Dr. Tom Kipps.  He spent two hours with me.  Warned me as an overseas patient have all the tests overseas.  Do not come into our system.  And he was wonderful, he said, "Do not let them transplant you.  We have clinical trials.  Unfortunately, you can probably as an overseas patient not get on to a clinical trial here, but while you're here, the CLL consortium meeting is on.  There's a patient forum about clinical trials.  Come to that tomorrow and find out if there's something that is coming to Australia that you will be able to use." 

And John says, "You know, are you a caregiver, because I'm only 40, and, you know, the average patient with CLL, as you know, is a 72‑year‑old man."  And he said—I said, "No, no.  I'm a patient, and I've failed chemotherapy. " And he said, "You're looking for a trial".  I said, "Yes."  He said, "Have you still got your British passport? " And I said, "Yes." And he said, "If you can come back to London, I can get you on a great trial of a new drug called ABT‑199, obinutuzumab (Gazyva)."

Esther Schorr:

So the combination was...

Deborah Sims:

...Phase 1B, obinutuzumab (Gazyva), so six cycles of that monthly infusions, monotherapy of venetoclax (Venclexta) 400 milligrams a day, and I was only in the Phase I trial after the tumor lysis death, so we—it's a very scary thing to do, but I came back to Australia and for the first time all my doctors agreed that this was the best treatment for me. 

And I had that survivor guilt that I'm on these four tablets a day, glass of water and I'm living a normal life.  I'm back at work, and I'm mother to my children, and yet other patients can't get this drug, so I started being a very annoying patient, jumping up and down on national TV and saying this drug has saved my life. 

And then I had a blood test a few weeks ago, so you're hearing it first, but, yeah, off a cliff, my MRD.  So, I've gotten 0.08 to 1 percent, and I have bulky disease. So, I'm already—mas—I can’t feel my neck.  I can't move my neck properly already, and this is only two weeks off of venetoclax, so Dr. Constantine Tam has taken me off venetoclax, said, look, we're both going to ASH.  Let's do ASH. 

Deborah Sims:

Not all the CAR Ts are doing well for CLL, but they're doing very well for ALL, so if can I somehow do ibrutinib as a bridge to CAR T I'm ready to do a harder treatment now.  I'm ready to be more aggressive.  I'm very worried about Richter's.  Eight years with this disease, I'm starting to become more and more heavily pretreated.  Like Andrew, I've had FCR.  The data says I'm probably a good candidate getting there for Richter's, and once you've had Richter's then your options are very, very limited. 

Deborah Sims:

So it's constant.  So you really need—this is the advice...

And the room started spinning.  The tears started coming.  I'm like, "She's only 2.  So, I don't need to live forever, but she needs to be 18.  So she's 10 now so I've got—just get me another eight years.  You've got me to eight years.  You've got me three years past my life expectancy.  I don't need to be greedy, although maybe I will be, but it's for me length of life rather than quality of life.  Like I would sacrifice that quality of life."

Thank you.  This is Esther Schorr for Patient Power from ASH 2019.  And remember, knowledge and advocacy can be the best medicine of all.

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

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