CLL Access to Care: How Patients Can Get Access to the Latest Treatments - 4 | Transcript | Chronic Lymphocytic Leukemia | Patient Power


CLL Access to Care: How Patients Can Get Access to the Latest Treatments

Andrew Schorr:

So, Larry, did we frame this right that you walk the halls here at the convention center, you go in the sessions, that for us patients there’s a lot to be hopeful about?

Dr. Saltzman:   

Oh, yeah.

Andrew Schorr:            

And now we have to really work with our resources and our physicians to try to get what's right for us.

Dr. Saltzman:   

Well, exactly. And I will say that I live in a small community, and I have a community oncologist. And from the beginning, I thought, "Well, I'm a physician," so I thought it was important that I plug myself into an academic medical center. Frankly, I think the more people who can do that not necessarily to get treated at the academic center but at least plugged-in with a consultation so when clinical trials come up, you the patient may be on the doctor’s radar to say, “Well, here’s something that might be applicable for you.”

When I needed chemo—which was suggested by the academic center—I didn’t go there to have the chemo because the drugs were the same whether I lived in my small community or not, so I was treated locally but managed or suggested academically. And I do think it’s important to get plugged-in because—no offense to us who live in the community—but we are not as in-tuned to all the clinical trials that are going on.

Andrew Schorr:

It’s a lot to keep up with. Imagine, Kathleen, trying to keep up with what used to be let’s say—you could count them on two hands the major cancers, and then she knew about some, and there are all these genomic subtypes.

Dr. Toomy:      

So, absolutely. And we in the community are very happy to have our patients be plugged in with an expert anywhere, but we realize that the majority of patients in this country are not treated in academic centers, the majority of patients in this country cannot be treated in academic centers, they don’t have the capacity.

So, what I think is really important is for the academic centers to work with the community and bring up everyone so that all boats rise, right? And we’re very good in the community with taking care of side effects of treatments, and we’re—and listen, traveling to get cancer care is always a problem, you know? And when you’re—in the middle of the night on a weekend…

Dr. Nichols:      

…and something goes wrong.

Dr. Toomy:      

And something goes wrong, you need somebody who knows you and can take care of you locally.

Dr. Nichols:      

Yes.

Hildy Dillon:     

Exactly.

Andrew Schorr:            

I think what it comes down to now is all of us to be as I said: smarter patients, smarter family members, and care partners. So, first have the discussion with your doctor, okay? So, what do we agree is needed in my case? What are we dealing with? What tests are right, are they affordable, hopefully?

Is there another way to do it? How do we know if the treatment’s working? Are there support programs? Are there clinical trials? Are there organizations, Cancer Support Community, Leukemia & Lymphoma Society, co-pay assistance groups that line up with my situation? Should I be in a clinical trial? Is that offering me maybe tomorrow’s medicine today, new hope? And does it have some economic advantages, as well?

Dr. Nichols:      

Can I make a pitch that…

Andrew Schorr:

…yes, ma’am!

Dr. Nichols:      

You have a clinical trial navigation service that is free for patients. And that has…where if you wanna learn about clinical trials, we can curate a list for you to bring back to your physician; we can also talk to physicians and help them if they have a patient they need to navigate. I know that it’s hard to go through clinicaltrials.gov and look for a trial for a patient.

I would urge people to consider that if they wanna learn about clinical trials or have…

Andrew Schorr:

…amen! I’ve been in two, and it’s been a big thing for me, and I really appreciate it, I would always urge people to look into that. So, we haven’t solved the problem here, we’ve made some suggestions. So, on the one hand, there's very encouraging medical progress here, okay? And really, you didn't wanna have to do this to have to speak out so much, but you and your family do need to get smarter about this so you get what's right for you, and also look for resources so you don't have to break the bank with state-of-the-art cancer care today. And there's support from industry, support from foundations, support form resources, and hopefully, every doctor is like Kathleen Toomey.

Dr. Toomy:      

Yeah, well…

Andrew Schorr:

…she is committed to you. I wanna thank you all for being with us. Dr. Kathleen Toomey from New Jersey, thank you…

Dr. Toomy:      

You’re welcome.

Andrew Schorr:

.for being with us. Hildy Dillon, our old friend from Cancer Support Community, thank you for what you…

Hildy Dillon:     

Old—old not in age.

Dr. Nichols:      

No, not old.

Hildy Dillon:     

Not in age.

Andrew Schorr:

Too many years. My friend, Larry Saltzman. Dr. Larry Saltzman…

Dr. Saltzman:   

Thank you.

Andrew Schorr:

..you’re living with chronic lymphocytic leukemia, keep going, running, and I’m glad you’re doing so well…

Dr. Saltzman:   

Thank you.

Andrew Schorr:

…with modern medicine.

Dr. Saltzman:   

Thank you.

Andrew Schorr:

And Dr. Gwen Nichols from The Leukemia & Lymphoma Society, thanks for your dedication, Gwen.

Dr. Nichols:      

Thank you.

Andrew Schorr:

And we’ll all raise our voices together.

Dr. Nichols:      

Yes, please, join us!

Andrew Schorr:

A great discussion! Join us, speak up, and we hope that you can get the best medicine for you or a loved one. I'm Andrew Schorr, remember: knowledge—like we’ve been doing today—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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Page last updated on January 18, 2019