[00:00:00] Adam Walker: This program is supported by Amgen. Amgen strives to serve patients by transforming the promise of science and biotechnology into therapies for patients with serious illnesses. Learn more at Amgen.com
From Susan G Komen, this is Real Pink, a podcast exploring real stories, struggles, and triumphs related to breast cancer. We’re taking the conversation from the doctor’s office to your living room.
Susan G. Komen will host their annual 2022 Advocacy Summit at the end of this month, culminating in a day of action on Wednesday, April 27. The Advocacy Summit is Komen’s only national advocacy event that provides advocates from across the country the opportunity to come together as one voice for those impacted by breast cancer. Advocates will hold hundreds of meetings with their Congressional offices virtually and call on them to support our priority policies.
Joining us today is John Scoblick, a Komen Leadership Council member and advocate whose daughter died of metastatic breast cancer at the age of 36. Before she died, Melissa was a staunch advocate for breast cancer patients, survivors and anyone at risk of receiving a breast cancer diagnosis. John has continued on her legacy through his work with Komen and is using his voice to advocate for policies that will help us save lives and put an end to breast cancer. John, welcome to the show!
[00:01:29] John Scoblick: Thank you for having me.
[00:01:30] Adam Walker: I’m really glad to have you. I know this is a difficult topic, so let’s, let’s kinda start easy. Ish. When and how did you get involved with Susan G?
[00:01:41] John Scoblick: Yeah. Now, as you mentioned our daughter, Melissa passed away at the age of 36 and that was November of 2019. And that following year was a COVID year. And I had lots of time on my hands and not a whole lot of things to do. So I was thinking about the this was the summer of 2020.
I was thinking of. Remembering Melissa the one year anniversary of her passing away, I’m not on Facebook or any social media, but wanted to remember Melissa and I am on LinkedIn for professional purposes. And so I put a picture of Melissa and I. From a banquet that we attended of breast cancer related banquet and just posted and said, Hey, this marks the one year anniversary of Melissa’s passing.
And in order to honor a legacy, I have signed up for the 60 mile walk that’s one year from now. Up until that point and you post on LinkedIn and not get 70 or 80 views some comments likes whatever the case might be. But in this particular situation, I got 20 over 20,000 views on LinkedIn and I was getting people were donating money.
To this cause. And I was getting communications from, and people I’ve never met people, survivors going through it parents that had lost children to it. And as you can imagine, it was an incredible experience. With that. My wife is very good friends with Janina deans. Who’s the executive director of Susan G Komen in central Texas, which encompasses San Antonio.
They were going for a walk and I said maybe you mentioned Janine. If there’s some way I can get involved with Susan G Komen and in a more formal way, I would certainly like to know if that’s a possibility. So she said Y Y. What motivates you want to do this? Although she knew the background of our daughter, obviously, and and she said what are your, your Springs?
That you can bring the Komen and the conversation in that pretty quickly on the strengths conversation. But long story short the common leadership council, the calendar is an April. Calendar year. I joined the council this past April and and since then I’ve been getting more and more involved with the local walks and galas and that,
[00:04:47] Adam Walker: wow. That’s, that’s fantastic. And I’m glad that you’ve, you’ve gotten that opportunity. And I think what you’re doing is going to have a real impact. So let’s talk about your daughter for a minute. Your daughter, Melissa had breast cancer. Can you talk about what her experience was?
[00:05:01] John Scoblick: Yeah. Melissa, she was truly amazing. And we were referred to her as sweet Melissa while she was limited. So she was a very special person. She had she had actually counseled she had a psychology background, so she was counseling. Patients going through radiation, primarily women going through radiation for breast cancer for a period of time.
And then to describe Melissa. I think there’s three events in her life posts being diagnosed with breast cancer that, that really. Or impactful to me after she was diagnosed and she was asked to participate in a luncheon kickoff luncheon which he agreed to do well unbeknownst to her at the time between the time she agreed to do it.
And her contracting breast cancer. She was scheduled for a mastectomy and the mastectomy was scheduled three days before the banquet. Okay. And she was not at the banquet and. She was asked to speak at it. So she was one of the key speakers. They gave her numerous opportunities to back out saying, Hey can, do you really think you can do this?
This is three days after your message. I got dad, I got do this. So she so she had on the set, the meat and didn’t really get out of. For three days other than to go to the restaurant. So I picked her up and. In Houston went to the, I said, look, if we, if we need to like, really, and, or you need to leave immediately after you present, but she was not going to be denied because she felt very strongly about that.
So she also had. Like many people in a version of public speaking, and there’s now a news anchor there and helped her long. She she went on to describe her story and couple of standing ovations and there wasn’t a dry eye in the womb hearing their story of having two daughters one year old, three year old and, and being, being dealt with this.
So just, just remarkable commitment. The second occurrence was was after she for free for a year and then was rediagnosed with metastatic breast cancer. And, and we were at MD Anderson cancer center in Houston and in the recovery room. And she had gotten, gotten out of surgery for a liver biopsy.
They felt like it had gone into her liver at that point in time. So we’re sitting there and she had, she had gotten nauseous from the anesthesia and she’s hooked up to monitors and tubes and that kind of thing. And, and her mobile phone vibrates. And she looks at that and she said, I have to take this.
This is a patient of mine. And she. Spoke to this patient for 25 minutes and never mentioned her situation. Like I can I get a call you some other time? None of, and to me that was like her selflessness, right? And, and, and for when she provided that counseling, that emotional and.
Mental counseling. There is there’s no audible office, ah, return response, right? So she felt like that that was more important, important that she speak to her patient than what she was going through. So again, just, just a selfless sweet girl. Then the third thing, I think that speeding. To her tenacity.
We call her sweet Melissa, but she never, ever gave up was on top, this was, this was her last year of life on top of being a full-time mom and a. Full-time counseling. Full-time, part-time a cancer survivor. She was working on her doctorate degree, online doctorate degree. And on one of our trips, she said how important it was her to one of our trips to the hospital and how important it was to her, for her to complete her doctorate, to walk and get her doctorate degree.
A few months ago, it was actually the wrong time of the November. I reached out to California Southern university where she was attending and said I know our daughter was very close to getting her degree, but I don’t know how close. So I looked into it for a few weeks and I called them back and they said, Melissa had completed all her credit hours required.
She had written a dissertation or paper, and the only thing she was lacking was orals that, that, that fence of for dissertation before a panel. He said we, we have the authority as a university to waive that requirement. couple of months ago she received her doctorate and and we hope that COVID permitting will be out in Costa Mesa, attending commend stuff with her husband, two little girls.
So the point of that is there’s the country song that says live like you’re dying. And she always lived, like she was living. Like she, wasn’t going to, she’s going to get every moment to complete your doctorate degree with what she was going through. It was just incredible, but I could go on and on, but essentially that’s who Melissa was.
[00:11:21] Adam Walker: Wow. She sounds just remarkable. Just absolutely remarkable. I really appreciate you sharing those those three stories with us. So I know that we talked about. She was involved with advocacy around breast cancer. Are there any specific policy issues that Melissa was especially passionate about?
[00:11:42] John Scoblick: Access to care is like the governing thing that she was obviously most concerned about. And, and, and the costs associated with that, right? It’s, it’s an access and cost, but there, there was a particular thing and, and and I found this morning post, she had done that on Facebook that my wife printed off Facebook person, but she says I have a family history of breast cancer.
No, if you have a family history of, if so, don’t wait until 40 to get a mammo. Going as soon as you can, I’m 30 to get the brag of the RCA test to see if you have the genes that make you more likely to get breast cancer. I think per the thing in particular for her and, and, and the visit she made was really the 40 and below.
Family history. Like it may not be paid for your mammography, but, but have it done and see if you possibly have the gene that your children won’t carry. Yeah.
[00:13:02] Adam Walker: Wow. That’s so important. That’s so important. And so thinking about your involvement you’re now spending your time advocating.
I think I have a hunch as to why that is, but I’d love for you to talk about why it’s important for you to speak out in support of these
[00:13:18] John Scoblick: issues. Yeah, you’re right. A key driver, the primary driver that got me started with was to, in some way continue Melissa’s legacy of doing whatever she could to have.
Survivors and in the support group of those survivors. So that, that, that obviously is very important. And, and that, that, that’s it is that that’s really, and not just for her legacy, but for everyone else that’s impacted.
[00:13:59] Adam Walker: That’s right for the broader community for the world. Yeah, that’s right.
So I know that the, the Coleman advocacy summit is coming up. Let’s talk about that for a minute. How are you feeling about participating?
[00:14:09] John Scoblick: It, I, frankly, I feel it’s, it’s a heavy responsibility. I take it is that I recently asked to be able to contribute in some way to this. And so I feel the responsibility to Melissa to, to, to what I can, and then also to the Susan G Komen foundation and their, their leaders and their employees that, that I’m able to convey something that, that creates a compelling argument for legislators to.
To approve of those initiatives that you hold dearly. Thank you. I think you’re a story and Melissa story is going to be pretty compelling. So I think, I think you’ll, you’ll certainly make an impact. So as we’re, as we’re thinking about these policies, what other policies can lawmakers. To help us support and in breast cancer.
Th th there there are lots of ways to do that, but Susan G Komen is focused brilliant in, in, in three initiatives and, and all of these initiatives have a common theme of, of patient access to care. And then the underlying financial resources that are required. To make that care possible. So one of those is the access to breast cancer diagnosis and way things currently stand is most major medical plans will cover the cost of the democracy.
Okay. But to the extent. It indicates that there’s a need for further diagnostic testing. That is not, that is not covered. So that’s, that’s something that just needs to be addressed. Th this a, the greatest defense for survival for metastatic breast cancer is early detection and that speaks clearly to that situation.
Statistically those who have mammograms, roughly 16% of those require some sort of further diagnostic testing that could create a a hurdle or a financial burden to those impacted that may have to make a decision between that and something more, they view maybe more essential to their living.
[00:16:48] Adam Walker: Yeah. Wow. I had no idea. I had no idea that, that, that, that was the case. They appreciate you sharing that.
[00:16:54] John Scoblick: Th there there’s another one that that’s very important and Melissa, to an extent was impacted by that. And that’s the metastatic breast cancer access to care act. So right now there is a five month waiting period for social security, disability insurance.
So a patient going through these difficult times have to wait five months to, to receive those benefits. The second component of that is there’s a 24 month waiting period for Medicare. And for, for patients living through metastatic breast cancer. So can you imagine going through everything you’re going through you may not have the financial resources and waiting roughly two, two and a half years for, for financial support.
So it it’s, it’s a. It’s a, it’s a terrible situation that someone going through this X the way back area.
[00:17:52] Adam Walker: Yeah. It’s so tough. That’s
[00:17:54] John Scoblick: wild as well. The third initiative is a little bit different in that it’s the national breast and cervical cancer early detection program. And it’s different in that there is a program funding currently in place, but the goal is to get.
That reauthorized on an ongoing basis. In particular with, with the situation of COVID-19, there has been a lot of people with breast cancer that have forgone various medical care,
[00:18:28] Adam Walker: right? Yeah. Absence. And it’s so critical to get back in there and make sure that everything’s good. John Really important initiatives. I’m so glad that we have someone like you, that’s, that’s out there and advocating for this. And, and I know at the end of the show, we’ll talk about how we can all get involved. But in the meantime is part of my last question here. What advice do you have for our listeners about the importance of becoming an advocate and using their voice for change
[00:18:57] John Scoblick: in terms of. Becoming an advocate I’ll use Melissa’s words. She says be your own best health advocate and follow your intuition. It saved my life. I know I’m going through this to help others and has made my faith stronger than ever because of it. So there’s two advocacy issues here, right there. There’s there’s the advocacy issue in terms of.
Being an advocate for the, for the organization and for all people at large. Particularly in the legislative process, but I think Melissa’s reminder is that survivors listening and, and they’re a support group that you need to be an advocate for yourself. Melissa had a demonstrate that she was told on four different occasions.
She didn’t have breast cancer. It was written off. She had met with a radiologist. Mammogram, they said, don’t worry about it. It’s just the fibroid. You just had a child a year ago. Don’t worry about, she went to the gynecologist and the gynecologist said, don’t worry about it. It’s a fibroid. She had felt a lump in her lymph nodes.
She went through an oncology. Who told her a breast cancer surgeon who told her the same thing. And then she had a bad feeling about insisted on a biopsy and it, it spread into her lymph nodes. So the story is don’t wait until you’re 40. If you have a family history, do whatever you can to get check.
And then even then during the process of, if you are diagnosed with breast cancer, you need to be your own advocate and family members need to advocate on behalf of their family members that are impacted by
[00:20:51] Adam Walker: Yeah be your own advocate. That’s what we’ve heard that so many times on the Shabbir app, be your own advocate, trust your own instance.
And advocate for yourself wow, John I, I really appreciate you sharing your story. Appreciate you sharing Melissa’s story. She sounds just phenomenal. And I appreciate you just letting us get a peek into the person that she was on the show today.
[00:21:19] John Scoblick: I’m grateful for this.
[00:21:20] Adam Walker: John, thanks again for sharing your story with us as well as for telling us how we can take action to help the lives of everyone at risk or touched by breast cancer.
For listeners who would like to join John in action you can text Komen2022. That’s Komen 2022 to 40649. You’ll receive a text back with a link that will take you to our action page s you can become an advocate, and let Capitol Hill hear your voice again. To get involved, text Komen2022 to 40649.
Thanks to Amgen for supporting this podcast. To learn more about Amgen’s mission – to serve patients with a cutting-edge science-based approach – follow Amgen Biotech on Instagram and Facebook.
Thanks for listening to Real Pink, a weekly podcast by Susan G Komen. For more episodes, visit RealPink.com. For more on breast cancer, visit Komen.org. Make sure to check out at Susan G Komen on social media. I’m your host, Adam, you can find me on Twitter @AJWalker or on my blog, AdamJWalker.com