May 15, 2023

Stroke Awareness Saves Lives

Stroke Awareness Saves Lives

May marks National Stroke Awareness Month and this week we’re speaking with a stroke survivor who wants to make sure if a stroke ever happens to you – you’ll know all the signs. Hear Stacy Quinn’s personal story and how delaying care almost...

May marks National Stroke Awareness Month and this week we’re speaking with a stroke survivor who wants to make sure if a stroke ever happens to you – you’ll know all the signs. Hear Stacy Quinn’s personal story and how delaying care almost cost her everything.

And Terry and Bob dive into the healthcare news of the week, including FDA approval of the first-ever RSV vaccine, decades in the making.

Don’t forget to register for the 2023 We the Patients Fly-In!

My Stroke of Hope Webpage

Patient Impact Report: Copay Accumulators

Patient Impact Report: PBMs

CNN Health News Article: FDA approves first vaccine for RSV, a moment six decades in the making

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The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising, nor do the views and opinions stated on this show reflect the opinions of a guest’s current or previous employers.



Stacy  0:00  
The ignoring stroke symptoms almost killed me. I exercised, I ate healthy my blood pressure and cholesterol numbers were great. So I really had no reason to think I was at risk of anything other than maybe the common cold. Growing up you never heard about women having stroke. It was always an older man down the street. So I really never connected stroke is something that could happen to me.

Terry  0:28  
May marks National Stroke Awareness Month and we are lucky enough to have an expert join us with real world experience in this realm. And as you heard, she is lucky to be here. Her story is coming up next. Welcome to the patients rising podcast. I'm your host Terry Wilcox, CEO of patients rising. I'm joined by my co host, who is also suing Ed Sheeran for taking credit for his music. He's Bob Goldberg, co founder of the Center for medicine in the public interest. So Bob, you're a musician now, right?

Bob  1:04  
Well, you you know that I know. And I'm going to give a pass. All right. I did. Right. Perfect photograph shivers bed. I mean, all these things were things I hummed. When I was jogging or gardening. He picked up it. That's okay. In any event, there's no singing. There's no

Terry  1:20  
Well, Bob, there is no singing for us on today's show. Instead, we have a very serious topic at hand to discuss.

Bob  1:28  
That's right, Terry, as you mentioned, it's National Stroke Awareness Month. And this week, we're fortunate to have Stacey Quinn who's the founder of my stroke of hope that she shares her incredible story and explains how you can do your best to stay safe as well.

Terry  1:45  
And later in the show, a significant step forward for treating RSV, otherwise known as

Bob  1:52  
Respiratory syncytial virus. But first, here's Stacey Quinn, after having stroke symptoms for more than 10 days, Stacy finally made her way to a neurologist, and thank goodness she did.

Stacy  2:05  
He believed I was having migraines, but to be safe, he ordered scans of my neck and my brain. And I keep fighting him. I'm like, Well, you know, I'm really busy. I can't go to night for the scan. And he's like, alright, but you can only delay it a day. So I did go have those tests. And it was hours after I had those tests. The neurologist called me and told me to get to the ER immediately I was in danger of having a catastrophic stroke. And what happened to me is one of the main arteries, the carotid artery that delivers blood from my heart to my brain dissected and caused a 90% blockage of blood flow, you know, and the doctors had told me that I had an angel on my shoulder that I didn't die.

Terry  2:45  
She was really great. Stacey was awesome. And one of the things that I didn't know this, but it really hit home, you know, having her on, which was one in five women, one in five women will have a stroke in her lifetime. That's not a small number.

Bob  3:05  
Yeah. And in a women also are also more likely to have sort of vague symptoms and migraines are one of them is fatigue. I know that my mom had, you know, looking back at it, fatigue, weakness, headaches, mean, all these things are signals that Stacy points out, you've got to take him seriously.

Terry  3:29  
Obviously, stroke is something that happens very often, especially in women. We don't think a lot about it. It's not like breast cancer, where everybody's like, get your mammogram, do your monthly breast exam. Like there's not a thing like that, right? I've had several friends and family members that have had this happen. And it does happen out of nowhere. Yeah, and

Bob  3:54  
it is a leading cause of death in the US, thanks to new medicines and knowing the signals. And we've had a dramatic decline in stroke mortality. But it's sort of been holding steady, we need to drive that down lower because in like lots of people, they thought a stroke couldn't happen to her, but it did. And for our earlier comments, she talked with us about why women should be aware of signs of stroke.

Stacy  4:25  
I think for women, a lot of times we are just so busy. A lot of times we put our health in the backseat. In fact, I volunteer with a woman who thought she was having heart attack symptoms and continued to make her children's lunch, send them off to school and then decided to get the help that she needs. So I think it's really important. What I usually tell people is it's important to be the CEO of your own health. If something doesn't feel right and something is wrong. You know your body better than anyone else. Seek help immediately.

Terry  4:57  
And the best way to protect yourself from this Stroke is by living a healthy lifestyle. I want to say that again, living a healthy lifestyle. 80% of strokes are preventable. But sometimes, even that isn't enough. So you need to know the signs. And Stacey says the acronym is be fast. And it can be the difference between life and death. And so here's Stacey on what that means.

Stacy  5:27  
B stands for balance issues is someone having trouble standing up or they falling over? E is for eye problems such as blurred vision, trouble seeing out of one eye, F is for facial droopiness is their smile crooked is their mouth going to one side. A is for arms, that's like weakness in the arms, you have trouble raising your arm, one arm drifts downward. And S is for speech. That's the slurred speech if you have trouble or difficult speaking, and that was one of my key symptoms. And the T stands for time. If you have any of these symptoms, you don't need all of them, call 911 immediately. And there is one symptom that's not in there that I really want people to be aware of. And that's the onset of a sudden severe headache, you would describe this headache as the worst headache of your life.

Bob  6:20  
In addition to a healthy lifestyle, and memorizing, like Stacey did the B FAST acronym and what it means you have to make sure that your vitals are in order. And you keep in touch with your own body and your own health history.

Stacy  6:36  
If you have high blood pressure, high cholesterol or diabetes, make sure that you're in regular contact with your doctors to manage those. It's taking your medicine, you know, a lot of people are prescribed medicines and then stop taking it you should never stop take yourself off your medicine until you talk to your doctor. And also it's really knowing your risk. Part of my story is when I had this happen to me, I had forgotten that years and years ago, it was probably two decades that my father had had two carotid artery dissections. And when I was going through this, none of us really in the family made the connection. And had I really took a deep dive into my family history and knew that I could have told my doctors and I think that would have provided some of the clues that they needed to diagnose me sooner. So I think knowing that family history, if you have a family history of stroke or heart disease is really important and to make sure that you discuss that with your doctor and it becomes part of your permanent medical record.

Terry  7:41  
As we always say and Stacy made a good point here you are the CEO of your own health care. So stop doing what you're doing and go take care of your health folks. My stroke of Hope gives information about stroke symptoms and prevention and carotid artery dissection. Stacy's is a personal story that others can relate to. And there are great tips and advice for all of us a stroke or not, we have to make sure we're paying attention to ourselves. Bob, do you have anything you want to leave our listeners with today?

Bob  8:10  
Look, my mom died of a stroke. My grandfather on her side died of a stroke. So I am in a sort of in a high risk category from a family history. So everything that Stacy said I have taken to heart and I've been doing so take stock. Get the monitor. And thank you Stacey for giving us a stroke of hope on today's show.

Terry  8:36  
I want to thank Stacey Quinn for taking the time to come on the show and share her important message a link to her website is in the show notes

Hey everyone, it's almost here. The patient's rising now we the patient's second annual fly in, make sure you're registered to join us in DC and make your voice heard about important issues. Last year's first ever we the patient's fine was a great success. And this year is sure to be better in acting even more changed because of patients like you the way the patients fight and takes place in Washington DC on June 12 And June 13. The link to register is in the show notes. Last week's episode was all about shortages of medical supplies caused by group purchasing organizations. And as a result we actually had a patient reach out to us because she herself has seen firsthand the shortage of hydrocortisone sodium second aid injection. I was told I spoke with several Doc's I spoke with people who worked in hospitals, people who worked in pharmacies, too. We determined that there was one supplier, one generic supplier. They had a hiccup with manufacturing issues. And it went offline for a little while and now they're back online and they'll be caught up by sometime in June. But this is a vital injection. And this shows one of the things that we've been talking about, which is, the more vertical integration that happens. And the more these GPOs and PBMs, decide, I'm going to make a deal with you. And I'm going to give you everything I have for this injection medicine. And you're gonna make all of it. Well, the problem is, when that person is making all of it goes offline, we have what happened with the formula shortages, and with saline shortages, and with any other kind of shortages that you can think of, because if you only have one supplier making something, and there's a hurricane, you know, that knocks out the building where it's being made, you're going to have supply problems.

Bob  10:49  
When you sole source like this, in a low margin business, you are going to drive out people that can't get the volume. And that is a problem. You know, in some other countries, the way that they deal with it is they don't sole source it, they give somebody the bulk of a contract, and then other people get a little bit. But it doesn't really address the fundamental point that you you made Terry, which is we need redundancy in the supply chain. So we'll be covering this. Unfortunately, there are more shortages. There's a bunch of shortages that are being monitored by the FDA. And I think American Society of Health System Pharmacists keeps a list of drug shortages. And if any of you in the audience have your own drug shortage story, which I hope you don't let us know.

Terry  11:44  
Yeah, let us know. Because we would love to start talking about that more and figuring out what's the cause of those drug shortages, whether it's a pharmacy counter drug shortage or a hospital drug shortage, because that's two different supply chains. It's interesting to know what patients are experiencing on the ground, which is where I always like to get the bulk of our information. So feel free to send us an email at podcast at patients If you have any stories for us.

Bob  12:08  
And now we teased to the top of the show that a big breakthrough in dealing with RSV has been made. I think we can all remember this past fall and winter. We saw a huge surge in RSV cases, including my family, and it's troubling for anyone to catch the virus. But it's especially concerning for folks with chronic illnesses like COPD and asthma. After 60 years of false starts and investment. A vaccine for RSV is then approved is tremendous news. The vaccines themselves are for adults, older adults.

Terry  12:50  
And for those over 65. I do believe Bob, this is one of the things that have obviously we supported in the inflation Reduction Act, which was free vaccines, right. So if you're over 65, in on Medicare, you shouldn't be charged at all for this.

Bob  13:04  
They've been trying to say it's sort of like the Goldilocks and the Three Bears finding that just right balance with RSV was really difficult. So, you know, one step was to finally solve that piece of the virus that would elicit a strong immune response. And the second thing was to make sure that you could mass produce it and make it safe and effective in humans. This RSV vaccine uses the virus's own genetic code against itself. And that's going to be the key for extending this vaccine or new vaccines in the works for infants and children.

Terry  13:41  
It's important that we talk about it and it's important that everybody talk to their doctor about it. If you're curious. If you're in the age category for the RSV vaccine that has been approved, we strongly recommend that you talk to your doctor about it and see if it might be right for you. For more information on this, there's a news article linked in the show notes. Thank you for listening to today's episode of the patients rising podcast. Make sure you share this episode with someone close to you. We want to make sure everyone knows the signs of a stroke because it could save someone's life.

Bob  14:10  
Yes, and click the Follow button so you don't miss out on any of our upcoming episodes.

Terry  14:15  
We'll be right back here on Monday with another new episode. Until then, for Bob and everyone at patients rising. I'm Terry Wilcox, stay healthy.

Stacy QuinnProfile Photo

Stacy Quinn

Founder, My Stroke of Hope