The Fight Against RSV Revs Up

Ronda Miller-Ernest  0:00  
I think RSV with parents can be a trigger word you say RSV. And parents are aware of it. They've known somebody, you know, a child who's had it their own child may have hadit  an older sibling may have had it. And I think it scares them, and rightly so can be scary.

Terry Wilcox  0:23  
Today, a race to get RSV vaccines to infants before the fall arrives, a nurse practitioner with more than 30 years of experience dealing with RSV, professionally and personally joins us to share just how dangerous this virus is. That's 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 taking rebranding notes from HBO Max is switch to just max. Now, instead of Dr. Bob, he's just Doctor Op. He's Bob Goldberg, co founder of the Center for medicine in the public interest. Op just doesn't quite ring like Bob does. I have to say,

Bob Goldberg  1:09  
oh, yeah, but wait, wait, that's not all. My color scheme is changing. No more black T shirts. I'm wearing a nice blue t shirt today. All right, well, let's put aside rebranding and let the consumers decide. Because we really do have some important issues to talk about here on the podcast, where you and I despite what t shirt i where and what name you want to call me, we're still going to discuss the latest health policy news, innovations and trends that impact the chronic disease community. 

Terry Wilcox  1:40  
Now, today's guest delivers a perspective that I think is going to be very valuable over the next few weeks as we hear more about this topic, and that RSV immunizations for children. Rhonda Miller Earnest has been a nurse practitioner for 30 years and also recently and unfortunately had two grandchildren hospitalized with RSV so she has seen all sides of the sickness.

Bob Goldberg  2:06  
She joins us because this is timely news. ACEP which is the Advisory Committee on Immunization Practices is actually opening as public comment period on RSV, right on June 5, the day this podcast episode publishes.

Terry Wilcox  2:21  
Exactly. So before we get too much farther forward, let's first explain a few things for some context. One, an RSV vaccine has been in the works for decades. And just a few weeks ago, we told you the news that an RSV vaccine had been approved for older adults. And recently advisors to the FDA also voted to recommend RSV vaccine for pregnant women with the goal of protecting their newborn children from the virus. Now, a monoclonal antibody directly for infants is in the works. And in a few weeks. ACIP is set to make recommendations on how future RSP immunizations will be available to patients under the Vaccines for Children program. Now their decision will determine if new immunizations in the coming months will be available and covered through the VFC program.

Bob Goldberg  3:13  
Right and a ACIP is the voting body within CDC and they provide recommendations to that agency and vaccines and immunizations, whether they should be adopted. And if they do vote to adopt them, then they are covered as a preventative, not only for the vaccine for children's program, but as a health benefit. So all of this progress in RSV protection is really crucial, since the fall was going to be here quickly. And last year as RSV surge was horrible for infants, my grandson had RSV, older adults and of course people who live with chronic illness like COPD. So to put everything in context, as you said, Terry, looking forward to hearing from Rhonda Miller earnest recently, your two grandchildren both got RSV and things got worrisome. They were

Ronda Miller-Ernest  4:05  
There were premature twins and so of course they were even at higher risk. And, you know, they had been kept in at home nothing, you know, we were very cautious with them. But their mother just had a cold and from there, you know, as we will know and adults the RSV you know appears as a cold and cold symptoms that then can be tragic to the younger and older population. And so she took all the precautions you know Brandman for sectioning watch day by day, as it happens, but sometimes, you know, no matter what you do, it progresses worse. So I believe it was on the fourth day that they had to be hospitalized but getting him to the hospital as emergency type situation. Fortunately, I rode to the hospital with him and had oxygen with me but But still, by the time we got the hospital, one of the babies had gotten into respiratory mess. So very scary.

Terry Wilcox  5:08  
This is such a scary thing. And you and I both know this Rachel, who works with us at patients rising now, many of you may have heard us talk about her before her daughter, her young daughter, who was not quite one at the time, got RSV over the holidays, and it was she was hospitalized. It was very scary. It's very scary for parents. Yeah,

Bob Goldberg  5:29  
very scary. And yeah, this has been a particularly tough virus to develop a vaccine around. For most kids. RSV is mild, but there are too many sick, serious cases that wind up causing people long term illness and unfortunately their lives. So this has been a very, very important advance. I'm hoping that a set will move quickly. We may even get Paul Offit on the show to talk about where he stands on these, but it's a good time for us to the patients to weigh in. It's one less infectious disease we have to worry about as parents and as caregivers.

Terry Wilcox  6:09  
If you are interested in commenting, it's a really short window. It's June 5 Through June 16. And then there's going to be live stream comments. We can read all about it at the link in the show notes. But the period to get your written comment in is June 5 Through June 16. As we head into the fall ASAP recommendations will be helpful for providers and give them a time to implement new immunizations in the care for patients, especially infants, which is why this is so important. It's a situation none of us ever wants to be in. And hopefully new immunizations can help prevent cases in the future. Rhonda has 30 years of experience tell her that parents have long been waiting for a solution.

Ronda Miller-Ernest  6:52  
I think because of RSV, being a little more well known parents more experience of children having it I think they will be really receptive to get an immunization vaccination that you know if there's any chance of preventing that. And again, anecdotally, I but I feel they would be on board. Because a frame of reference is important. And lots of times people have no frame of reference to you know, polio, diphtheria, tetanus, you know, they have no frame of reference. So, when there's a frame of reference, I feel it's a little more accessible to filling. Hey, yeah, I want to prevent this.

Terry Wilcox  7:43  
Well, as we mentioned at the top, this past fall was a horrible RSV season. Here's Rhonda again,

Ronda Miller-Ernest  7:48  
this last season, as you well know, obviously was terrible. We were just not hospitalizing, you know, two and three and six month olds, we were hospitalizing two year olds that struggled. And so I think, you know, cost for hospitalization, whether you're insured or not loss of work, the trauma, the hospitalization, and then that child becomes you know, just in that parents I probably much more vulnerable than they would have been.

Terry Wilcox  8:21  
Once new vaccines are made available. It's important that they're accessible to families through the Vaccines for Children program. Rhonda explained how this program gives peace of mind to parents.

Ronda Miller-Ernest  8:32  
vaccine for children is excellent when parents are uninsured or underinsured. And you explain that this will be covered, there's a sigh of relief and parents will, you know, take advantage of they feel so grateful that there's a program. And that's not to say not all people, you know, will take advantage but I feel that they do you have a sense of relief when they feel it's not going to cost them a fortune to be immunized and they have access to immunizations.

Bob Goldberg  9:03  
No, I shouldn't say parenthetically, when the vaccine for children's program was first introduced. The desire was to nationalize vaccine production. So calmer heads prevailed, though yours truly had a hand in making that happen. And as you pointed out, and as Rhonda pointed out teria it is a important part of the panoply of drugs and vaccines that many people don't have covered under some of their existing insurance plans. So especially this vaccine coming in, as it does in the heels of COVID. Really, really important.

Terry Wilcox  9:41  
Definitely such vulnerable populations for RSV, the elderly and children. So definitely, this is a huge win for infectious diseases.

Bob Goldberg  9:50  
And I was going to we may want to add that globally to it's a big I mean, well, first of all US 14,000 adults die of RSV a year There's over nearly 200,000 hospitalizations. And the risk of mortality among kids actually increased as one of the leading causes of death of infants. So it's a big problem here and around the world.

Terry Wilcox  10:14  
Thank you so much to Rhonda Miller, Ernest for coming on and bringing a real perspective on this issue. I love when we can talk to an expert who also has a personal story as well. If you want to watch the ASAP hearing or submit a comment, a link is in the show notes.

Terry Wilcox  10:35  
This episode of the patient's rising podcast is brought to you by the patient's rising helpline, our team is here for you and we want to help you if you have an issue or problem related to getting care. We have worked with 1000s of patients and our staff of patient navigators has narrowed down the best local, state and federal health care resources to solve your biggest challenges. Food or housing insecurity, overcoming insurance obstacles are just a couple of the issues our team can help you deal with. To get in touch, leave us a voicemail, or send us an email using the link in the show notes.

Bob Goldberg  11:14  
Terry, we discussed a lot of excess issues related to health care on this podcast. But this week, there's a story from Kaiser Health News that I mean really takes the cake. I mean, it just showcases how crazy some of these denials really are.

Terry Wilcox  11:31  
Yeah, Bob, you know, it's getting out of hand. I mean, it is a crazy article. When I read it. I was just like, when there's an entire article called denials of health insurance claims are rising and getting weirder. Yes. The pieces by Elisabeth Rosenthal, obviously we'll have a link in the show notes. There are a couple of examples here, but this one jumped out. Now listen to this. This is a quote Deirdre O'Reilly's college age son, suffering a life threatening anaphylactic allergic reaction was saved by epinephrine shots and steroids administered intravenously in a hospital emergency room. His mother, utterly relieved by that news, was less pleased to be informed by the families ensure that the treatment was not medically necessary. not medically necessary. I mean, what's going on here, Bob, who's doing these denials? Are they robots? Are they people?

Bob Goldberg  12:32  
There are robots with the intelligence of humans? I don't. It's like, I think what's happened is that I read the article is basically some AI bot, produced the denial and the explanation. I mean, it's, it's just the first place you want to use AI is to provide access to information that can help save a life, not to deny coverage, they sent a denial claim directly to a newborn child, denying coverage in neonatal ICU with simple notification said, You are drinking from a bottle and you are breathing on your own. Unfortunately, the reading skills of a newborn aren't up to those of the AI bot. It's unbelievable.

Terry Wilcox  13:21  
I mean, I am just so grateful. Because I have to tell you something. When my children were born, I had twins. And Jackson was a little not as fully developed in the lungs. James probably could have gone home within 24 hours or so. But Jackson needed more time. And the hospital thought it was so important that the twins stay together, regardless of their status, that they just and even they kept me in longer for the C section, the maximum amount they could and everything got approved. I always say that according to the bills that James cost us out of pocket $6,000 and Jackson was free. That was our that was our copay that we had to pay for the delivery, but it was really like a an astronomically large bill. Unfortunately, we know that this is something folks within our community experience far too often. To read all of the insane cases they compiled. You can find that link in the show notes. And before we close out today's show, we have an update on the story we covered last week regarding United Health Care's decision to require new prior authorizations for 61 medical codes. They include numerous endoscopy procedures, including colonoscopies. Thanks to you to patients who advocated against this policy. UnitedHealthcare pressed pause on this decision right before it was supposed to go into effect on June 1. United Health Care's proposed workaround, though is still getting pushback from providers who say that the new advanced notification process still requires burdensome paperwork and documentation that could delay care. To learn more about these changes, head to the shownotes Thank you for listening today. Today's episode of the patient's rising podcast. If you have just a few seconds, we'd love it if you could pass this episode along to fellow patient advocates,

Bob Goldberg  15:08  
right and click the Follow button so you don't miss out on any of our upcoming episodes.

Terry Wilcox  15:13  
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.