Tecentriq: Tips for continuing treatment when it’s working for you, with Gina M. Spradling

Breast Cancer News
October 20, 2021

In August 2021, Genentech, maker of the immunotherapy atezolizumab (Tecentriq), announced they would voluntarily withdraw the drug from its approved use to treat metastatic triple-negative breast cancers that express PD-L1. The decision was based on a clinical trial that showed adding atezolizumab to treatment with certain chemotherapy medicines did not improve survival.

Still, many people now in treatment with atezolizumab are seeing positive results. To help you understand what this change of course could mean for you, Living Beyond Breast Cancer CEO Jean A. Sachs, MSS, MLSP, spoke with Hear My Voice advocate Gina M. Spradling, who was diagnosed with metastatic breast cancer in November 2020 and is now taking atezolizumab. In this video, Gina shares how she found out about the withdrawal, as well as what she learned by talking to Genentech and her oncologist. Gina offers tips for advocating for yourself if you want to continue treatment with atezolizumab when it’s working for you.

Resources mentioned in this video:

Jean A. Sachs, MSS, MLSP
Chief Executive Officer, Living Beyond Breast Cancer

Jean began her work with LBBC in 1996 when she became the organization’s first executive director; she was named CEO in 2008. Jean brings a lifetime of women’s advocacy experience to her role as CEO. She lives LBBC’s mission every day by speaking with newly diagnosed women about their needs and gaps in support. Read more.
 

Gina M. Spradling
Gina M. Spradling was diagnosed with metastatic breast cancer in November 2020. Since her diagnosis, she has dedicated herself to patient advocacy while continuing to work full time in the insurance industry. In April 2021, she joined Living Beyond Breast Cancer’s Hear My Voice Metastatic Advocacy Program, and in June 2021 was selected to participate in AstraZeneca’s My MBC Story/Beyond Pink campaign. She has attended several major medical conferences, webinars, and expert meetings as a patient advocate.
 

Jean A. Sachs, MSS, MLSP:

Hi everyone. I’m Jean Sachs. I’m the CEO of Living Beyond Breast Cancer. Today, we’re going to talk about Tecentriq, an immunotherapy that had accelerated FDA approval for metastatic triple-negative breast cancer and was given in combination with certain kinds of chemotherapy in people whose tumors expressed PD-L1. Recently, Tecentriq was voluntarily withdrawn for use by its maker, Genentech. It remains approved in Europe and in some other countries, but this withdrawal means health insurances may no longer pay for the treatment of Tecentriq for metastatic triple-negative breast cancer, even if it is currently working for you.

Since the withdrawal, we’ve heard reports from our community, from people who are taking Tecentriq for metastatic triple-negative breast cancer — the drug is working, and their doctors are now taking them off and putting them on another approved immunotherapy called Keytruda. We know this type of change can be very stressful for people who are using medicine that is working well. Today we are very fortunate to be talking with Gina Spradling, a woman who is living with metastatic triple-negative breast cancer. She’s also a current member of our Hear My Voice Metastatic Advocacy Program. And she’s going to share her story, which I think will give everybody some practical tips and some hope. Welcome, Gina.

Gina Spradling:

Yes. Thank you so much, Jean.

Jean A. Sachs, MSS, MLSP:

We’re so happy to have you. As I mentioned, you have metastatic triple-negative breast cancer. Please tell us a little bit about when you were diagnosed and what your treatment has been so far.

Gina Spradling:

Primary diagnosis was back in July of 2019 and in November of 2020, I was diagnosed as metastatic, with metastasis to the liver and bones and biopsy proven to be triple-negative metastatic breast cancer. At that time, we did the whole genomic testing and were able to find that I was exactly 1% PD-L1 positive.

Jean A. Sachs, MSS, MLSP:

Wow.

Gina Spradling:

So that made me a candidate for treatment with Tecentriq, plus Abraxane. Abraxane is the chemotherapy that they partner with Tecentriq. And I started that therapy combination in December of 2020. I’ve responded really well to this first line of treatment. I’m still on this first line of treatment. I have now completed 11 cycles. After cycle six, I had no evidence of active disease.

Jean A. Sachs, MSS, MLSP:

That’s amazing.

Gina Spradling:

It’s been fantastic for me. And it’s come with very few side effects or at least manageable side effects, I should say. So I felt very fortunate to be responding so quickly and completely to this drug regimen.

Jean A. Sachs, MSS, MLSP:

So I can only imagine how you felt when you heard the news about Tecentriq being pulled.

Gina Spradling:

Absolutely. I found out about Tecentriq being pulled in late August. I was actually traveling with my family for a wedding, and I happened to see a post in a newly diagnosed metastatic Facebook group that I’m part of. Someone had posted about this, and it was the first time I had heard of it. It immediately sent me into “What do I do now?” mode, “What does this mean?”, this voluntary withdrawal. Why did it happen and what comes next? And so that was immediately what I started to do. I started to take a look at what this really means? Outside of Facebook, I started to Google, looking for news articles, press releases, any information about why the indication for metastatic triple-negative breast cancer was pulled for Tecentriq.

That was easily found, and I was able to find that this did happen. And my first call was to Genentech to understand the process and why. And I really got some great information during that call. They bounced me around a little bit. I talked to a few different people, but what was reassuring is I talked to one of the pharmacists there. He explained to me the entire reason why the indication was pulled. And he also explained to me that the drug itself was not pulled, which is what I was worried about: has the drug itself had been pulled and could I no longer get access to that? He also gave me some really practical advice, explaining that my oncologist could continue to prescribe it off label. So that was really great information for a lay person like myself..

As the patient, you don’t always understand all the available options and things that can come together to be able to continue a particular treatment. So, I was armed with that information, which was great; that led to conversations with my oncology team. And my oncologist did not at all ever consider abandoning this course of treatment for me because I was having such a positive response. What I’ve heard in a lot of on Twitter and in my Facebook groups is that some oncologists took the withdrawal of the indication as a mandate to remove these patients from this treatment option. I was very fortunate, plus I also push a lot.

So I was fortunate that my oncologist did not interpret it that way. She very much wanted to keep me on this same line of treatment and explained to me that she would do whatever it took to advocate on my behalf with my insurance company, if it meant peer-to-peer review, she said we’ve got enough documentation. We’ve got the original clinical trials that showed the efficacy of the drug in this patient population. We also have your personal experience, how you have responded thus far. And she said, that’s how I’ll fight this with your insurance company. She assured me we would stay the course.

In the meantime, I also was able to find out from Genentech that if something did happen that my insurance company would not continue to provide coverage, Genentech has a patient foundation through which you can apply for assistance to receive the drug either at no cost or a reduced cost, if you do not have access to the drug through your insurance, or you cannot afford it. Even though I didn’t need the service and my insurance company is continuing to pay, they went ahead and set up a profile for me and got the ball rolling in case my insurance company was to deny this request. So we were able to get all of that in line as well. So as the patient, who experienced a gut punch when I found out that this happened, it was very comforting to know that I’ve got my oncology team on board, they’re set up, they’re ready to go. They’re going to fight for me. And now I’ve got Genentech, who’s going to come up with a plan B for me, for perhaps being able to be approved through their patient foundation for financial assistance to receive the drug if I needed it.

Jean A. Sachs, MSS, MLSP:

Well, it sounds like you did everything right. You got all the information you needed. You went back to your doctor and you set things up. So it is great to hear that this worked out so well for you. And what we hope is for those that are listening, they really take these tips to be proactive—call Genentech. We will give you that number. And you’re right, this drug was not pulled from the market, and it’s actually approved in many, many other disease states so it is certainly available, which is different from when a drug has pulled and is no longer in use for other therapies. So let me just give everybody this number.

If you’re taking Tecentriq and you have questions about your health insurance coverage, you can reach out to Genentech directly. It’s their patient resource center and it’s 877-436-3683. So Gina, you were successful — did you miss any treatments, or were you able to stay on course completely?

Gina Spradling:

You know, I did not miss any treatments at all. It was fortunate: the timing of all of this happened on a natural one-week break that I have every cycle. So that gave me a little bit of additional time to make all these phone calls, gain the reassurance that I was able to continue. I even made a phone call to my insurance carrier. My health insurance carrier provides me, as a cancer patient, a nurse navigator at the insurance company. And so I got her on board to find out exactly what the process would be and what we needed to do. And it aligned very closely with the path that my oncologist intended to take, to get me continued approval for this treatment regimen.

Jean A. Sachs, MSS, MLSP:

That’s great. So it is important to reach out in all directions: your provider, your insurance, the manufacturer. And we understand this is stressful. You’re living with metastatic breast cancer; that is stressful in and of itself. You don’t want to miss your treatment. So you’re very calm today, but I’m sure when this all happened, there was some panic.

Gina Spradling:

Definite panic. I literally was in tears when I read this. It felt very much like a lifeline for me was being taken away, and I immediately went into advocate mode. What do I need to do to advocate for myself, because going off this drug is not an option.

Jean A. Sachs, MSS, MLSP:

Yes.

 Gina Spradling:

And that is really what I hope that people listening to this will take away from this conversation is that you’re your own best advocate. And even though we don’t know all the terminology, we don’t know how all the pieces always necessarily fall together, we can figure it out. And you just start at the top, don’t be afraid to call the manufacturer.

Jean A. Sachs, MSS, MLSP:

Right.

Gina Spradling:

Get those answers, get that information, get your oncology team on board, get your insurance carrier on board. Leave no stone unturned.

Jean A. Sachs, MSS, MLSP:

That’s great. Well, thank you so much, Gina, for sharing your story. And we are so pleased things worked out well. For anyone who is facing this situation, we hope this was helpful. I think Gina is an example of someone who was able to figure this out and continue to get access to this really critical therapy. I want to just remind everyone that Living Beyond Breast Cancer’s website is always available. We also have closed Facebook groups, so if you’d like more immediate support, just go onto our website and we’ll join you with one of those groups. Thank you, Gina, and have a great day.

Gina Spradling:

Thank you.