Patients rely on access to a broad range of innovative and effective medications to find a treatment option that best suits them. But restrictive formularies and price caps could prevent patients from accessing newer medications that could improve their lives.
Senator Marsha Blackburn discusses her mission to protect innovation and the competitive structure of Medicare Part D to keep drug costs low and options high for patients.
Plus, health economist Dr. Paul Langley underscores the importance of including patient and caregiver voices while assessing the cost value of drugs. And Kate speaks with Kristine Hutchinson from a caregiver’s perspective, and Patient Correspondent Angela Deed reflects on the frustration of not being heard by doctors.
U.S. Senator Marsha Blackburn was sworn in to the Senate in January 2019.
Marsha Blackburn was elected to the U.S. Senate in 2018, and is currently serving her first term representing the state of Tennessee. Before her election to the Senate, Marsha represented Tennessee’s 7th Congressional District.
In 2002, Marsha was elected to represent the people of Tennessee’s 7th Congressional District based on her record in the state legislature. She brought her Tennessee values to Washington, DC, and became a leader in the fight for small, efficient federal government that is accountable to its citizens. As a Congressman, Marsha was often selected by her colleagues to lead the charge for principled conservatism. Her congressional career has been punctuated by her Chairmanship of the Energy and Commerce Committee’s Subcommittee on Communications and Technology, as well as bipartisan expertise in defending songwriters’ and performers’ rights.
Protecting Innovation for the Next Generation Act
New Jersey ‘Shot and a Beer’ program offers free beer to those who get Covid-19 vaccine
H.R. 3’s international reference pricing misses the mark
A Better Way: Replacing the QALY with a true, patient-centered quality-of-life measure
Patient Correspondent: Angela Deeds
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Overall, there's no cure or long-term solution yet, but we're hoping that that comes about.
The ICER business case from my understanding and reading through most of their report is that they effectively ignore the patient voice.
We know what happens to patients in other countries referenced by the HR 3, they get worse access to treatments because the lives of people with rare diseases and disabled people are undervalued.
We are looking at different cancers with research and treatment, and it is the private sector that spurs this innovation. It is not the Federal government that spurs that innovation
Terry Wilcox (48s):
Today, what some in Congress are doing to protect and encourage medical innovation for patients. Our exclusive chat with Senator Marsha Blackburn is up next. Welcome to the Patients Rising podcast. I'm your host, Terry Wilcox, Executive Director of Patients Rising, a hundred thousand members strong organization of patients with chronic illness. I'm joined by my cohost, Dr. Bob Goldberg, Co-founder of the Center for Medicine in the Public Interest. Now, Dr. Bob, I know you're fully vaccinated already, so I'm sorry to give you the bad news that you're ineligible for New Jersey's shot and a beer vaccine incentive.
Terry Wilcox (1m 29s):
I wish there was wine and a beer vaccine incentive in Virginia because by the time we have our next show, I will be vaccinated with the one-time shot.
Dr. Bob Goldberg (1m 39s):
Well, all I can tell you is that I've been practicing shot in a beer for the last few months, so I don't need another one from the state. Thank you very much. And after this show, I might need double. So, I'm just so annoyed with everybody, not you, that you just, you know, the health policy community that we've got to discuss again, but oh, actually no, let me take that back, Terry, because there is some good news, you know, that we got Marsha Blackburn on and she's got a bill, which is an antidote to HR 3 which will lead to fewer medical innovations for chronic disease patients.
Terry Wilcox (2m 21s):
Well, and when we look at just how important research development and innovation in medicines are, the obvious big example is the COVID-19 vaccine. Now you and I both know if we were to apply the same urgency and remove the extraneous government red tape, we might see some groundbreaking treatments and medications brought to market for patients that we know you and I both know suffering from rare and chronic conditions.
Dr. Bob Goldberg (2m 47s):
You're right. And we've said it before. We'll say it again. Operation warp speed. That's the benchmark for how we should approach developing new drugs and investing in them.
Terry Wilcox (2m 59s):
Well to help protect medical innovation, Senator Marsha Blackburn from Tennessee introduced a bill to the Senate. It's called Protecting Innovation for the Next Generation Act. And the ultimate goal is to ensure patients can access innovative medications and treatments under Medicare part D, which we haven't talked as much about. Now we spoke with her about the bill and her thoughts on the current state of innovation and competition in the U.S. That will be up shortly, but first this week's healthcare news headlines.
Robert Johnson (3m 34s):
In your health news, formulas for the most effective COVID-19 vaccines soon may be available to anyone who wants them. The Biden Administration this week said it would support a proposal to weigh patents on vaccines even though it's unclear whether the move would be much help to countries battling the surge of COVID infections. That's because there's a limit to the world's production capability when compared to demand. Also the first COVID vaccine for kids may be approved next week, but parents have mixed feelings about the pending decision. Only 30% of parents have eligible 12 to 15 year-olds told the Kaiser Family Foundation they'd have their children vaccinated right away. A nearly equal number, 23%, said they definitely would not have their kids get the shot.
Robert Johnson (4m 18s):
Many said they would wait to see if schools required the vaccine to attend in-person classes. A few weeks ago, experts at Kaiser predicted a slowdown in demand for vaccines and now it's happening. This week, CNN reported the number of shots given has dropped to less than a million a day, lines are shorter at many clinics, and social media sites are full of pleas for patients to come get shots before they need to be thrown away. Finally, President Biden said Tuesday he wants 70% of Americans vaccinated against COVID by July 4th. On Wednesday, his CDC Director said models show vaccines and careful behaviors could bring the virus under control by summer.
Robert Johnson (4m 59s):
The feds are looking at four scenarios, one predicting a peak in cases in late spring, followed by a decline. Another shows varied results state by state. The best case scenario, the one that says this could be over in a few months, assumes 90% of Americans will get vaccinated. A number that everyone agrees is overly optimistic. That's your health news update for this week. I'm Robert Johnson.
Terry Wilcox (5m 28s):
We have to talk about this, Bob. Last week, President Biden addressed a joint session of Congress on a variety of issues. And we, along with many patients in the chronic disease community, held our breath for health care news. So let's dive into the big health related points he made in his speech that our audience should be aware of. You know, one of the things you know that he did mention was increasing the subsidies for premiums for out-of-pocket premiums. I know he mentioned that, you know, I know he is in support. I believe he is in support of HR 3, which you and I both know all the numerous problems with that.
Terry Wilcox (6m 10s):
The price controls, the taxes that would limit access and the fact that it's not really a bipartisan solution, despite people saying, oh, but 50% of the American public thinks that we should negotiate with Medicare. And to that, I say, yeah, if you just are, you know, going up to Americans and saying, do you think the government should be able to negotiate with Medicare? And they don't really use the system or understand how it all works, that sounds like a pretty good idea, right? I mean, if you're just being polled, correct. I mean, wouldn't you think?
Dr. Bob Goldberg (6m 42s):
Well, you know, finding good ideas on either side is always a challenge, but I think Senator Blackburn's bill is a good idea. HR 3 is a horrible idea. You know, the idea of capping copayments I think is great. And as you've seen in the state of West Virginia, it's possible to do it at the state level. And maybe that's what it's going to take to really get some relief to patients without killing innovation. HR 3 does three bad things. One is that it targets the newest drugs for the people with the most need and the most vulnerabilities for price controls. Then it sets up a review board like ICER to decide who will get it and when presumably along certain sort of budget impact areas.
Dr. Bob Goldberg (7m 30s):
And then thirdly, you know, there's all this other mischief coming on with inner requiring drugs that are accelerated approval to go through full approval to get reimbursement. And then finally there's the taxes and IP, which is essentially saying, well, invest in IP in other countries because you're going to get half the tax rate on the royalties from that. So those things will harm innovation much more than what the CBO has even estimated, which is 38 drugs over the next decade. It'll be twice as much. So all in on not much good I can say about it.
Terry Wilcox (8m 6s):
One of the things that we did watch this week was the Energy and Commerce Subcommittee on Health had their hearing on HR 3. And one of our friends of the program, Crystal Davis of Texas Rare Alliance did testify. She's been a past guest on the podcast and she talks very specifically in her testimony about the quality and their use of them in HR 3 and how that would impact her son, Hunter, and other patients like him. You know, patients in the rare disease community, to your point, you're constantly saying, why are we starting with kids with rare disease or people who don't have a treatment yet? Or, you know, why are we doing that?
Dr. Bob Goldberg (8m 47s):
I was going to say, Terry, there's a false choice. And you mentioned this before when we opened the show, that people saying, oh, well you also impair access when people can't afford drugs. And these drug prices are too high. Well, given the way rebates are organized, don't oppose copay assistance, don't oppose, you know, charitable support. Most of these new medicines and most of these companies have programs in place to make these medicines affordable. What's holding up access are people who say, no, we want to pocket that money and we still want to deny access to certain patients.
Terry Wilcox (9m 21s):
Well, one of the senators in Congress who is focused on helping the patients is Senator Marsha Blackburn of Tennessee and her bill called the Protecting Innovation for the Next Generation Act. And what it would do is prevent the administration from repealing the non-interference clause in Medicare part D. Now we haven't talked a lot about that. That clause protects private price negotiations between Medicare part D plans and drug manufacturers. Now Medicare part D has been incredibly successful in getting patients affordable medications, largely due to its competitive structure and getting rid of that could be bad news for patients. Here's a bit of our conversation with Senator Blackburn.
Senator Blackburn (10m 4s):
Well one of the things that we have to remember is that the Medicare part D program has really been successful beyond anybody's expectations in providing pharmaceuticals for more than 45 million seniors and people with disabilities. Now, the reason it has been successful is because the competitive market has kept total Medicare part D costs below those original estimates. And it's done this while still offering beneficiaries steady premiums and access to a broad range of options.
Senator Blackburn (10m 52s):
Now that is what seniors want - is to have choice and options in what they're going to choose. Now, the reason we have this competitive structure is due to the non-interference clause, which really gives us that robust private market negotiation without undue government interference. Now, there are those in the administration who want to radically change Medicare part D. They are desperate to find funds to pay for a really partisan one size fits all approach.
Senator Blackburn (11m 34s):
And what they would like to do is to repeal the non-interference clause for the money that they think will be saved to their Federal program. And in doing this, they say, well, government can go in and negotiate the drug prices and that's going to save money. Now that is one of Nancy Pelosi's talking points, but we've got a lot of the economic experts, including the bi-partisan CBO. They say that the only way the repeal of that non-interference clause would save money, is if there is a restrictive formulary, which is only one pharmaceutical available in each classification, that is something that is practiced at the VA.
Senator Blackburn (12m 31s):
So, you know, we've got a lot of veterans even that have part D coverage in addition to their VA benefits because they can't get the medications that they need through the VA because there is that drug price negotiation plan that only allows them one option. Now, if you had that type approach to Medicare, and if that were done to the 45 million seniors that are on Medicare, this would kill pharmaceutical innovation. And that matters because we still are looking for cures for Alzheimer's, we're looking for treatments for Alzheimer's, we're looking for treatments and cures for renal disease, we are looking at different cancers with research and treatment, and it is the private sector that spurs this innovation.
Senator Blackburn (13m 33s):
It is not the Federal government that's spurs that innovation.
Terry Wilcox (13m 38s):
I could not agree with you more with everything you just said. Patients Rising, we solely focus on patient access and affordability. So when we saw this act that you were putting forth in protecting medical innovation, because quite honestly, right now, medical innovation seems to be under attack. There's a bad PR or communications messaging around the fact that Medicare drug prices aren't negotiated. And they actually are in part D to your point. They are negotiated in, in more of a market-based system, as opposed to part B, which is slightly different. And we're not talking about that today. But part D is very much working. Now, how would this, in preserving this, how would this preserve access for new medicines for seniors?
Senator Blackburn (14m 21s):
When you look at the private sector marketplace, which is what part D is, then you have competition that is built into this. And when something comes into the marketplace, a new pharmaceutical comes in and it is put onto the schedule by that part D provider, then you allow that option for seniors. If you were to say, okay, what we're going to do is simply this, we're going to say, you've got one form of antibiotic, you have one if it's a cardiovascular issue for each of these classifications, you get one option.
Senator Blackburn (15m 8s):
You don't get that choice. That means you would be prohibited from having access to a new pharmaceutical that came into the marketplace. That is the restrictive model. That is the model that is used by the VA. And as you know so well, patients, our Medicare enrollees, and individuals that have chronic issues every year, when they go get their medical checkup, what do they do? They take their pharmaceuticals. They review them with their primary care physician. They find out about new pharmaceuticals that are coming into the marketplace.
Senator Blackburn (15m 53s):
And then if there is something that seems it may be more suited for them, then the physician may change them to a different pharmaceutical. So if you go to a restrictive model, you don't get that annual checkup with somebody who is following your record, who is helping you review those pharmaceuticals.
Terry Wilcox (16m 20s):
There you have it, Bob.
Dr. Bob Goldberg (16m 22s):
Yeah. She goes right to the heart of the matter and that is every system that has price controls, has restrictive formularies. Every system that tries to cap the price of a drug, also restricts access, and restrictive access harms patients in a number of ways. And in fact, there have been study after study showing that restrictive formularies drive up the total cost of care because people are not as healthy as they could otherwise be. I could listen to that all day. I just wish other people would listen to it then change their minds.
Terry Wilcox (16m 58s):
No, and a lot of people don't understand because when you talk about, you know, the buzz word is like, you know, the government should negotiate with Medicare, should negotiate with Medicare, should negotiate with Medicare, that's just like all you hear, some people are a broken record with this statement. Like it is going to be the panacea for drug pricing in this country, which you and I both know it will not be, but when people talk about Medicare part D, they don't single out the fact of what you and I both know and obviously Senator Blackburn knows they're already negotiating part D.
Dr. Bob Goldberg (17m 29s):
They're negotiating and the, the missing element is a free market way to fill that donut hole which is a dumb idea. Well, it wasn't a dumb idea when it first started because no one anticipated, you know, the explosion of new medicines that really can make a difference. It may be more expensive like Car T's so we have to change that. We don't have to put price controls on it. I think that's what Senator Blackburn is alluding to is that you can find a way to increase choice, promote competition. You can promote accountability, and that's probably a better way to get things done than to have the government come in, thank you, ICER, and decide what drugs should be covered and shouldn't be, using a QALY.
Terry Wilcox (18m 12s):
Well, you and I both know nothing kills private sector innovation faster than price controls, especially since this kind of research and development takes a lot of time and money. That's the one thing we don't often talk about is the capital of actually having the patients in the clinical trial. Let's listen to what she said about that. You know, there's a lot of talk now with this new administration around the use of price controls for medicines, especially for those in rare diseases. Does it limit that in this model?
Senator Blackburn (18m 41s):
We do not limit that. And as you know, we did the Cures Act back in 2016, and were able to front-load money for research and development into that. Now we are beginning, five years after the Cures Act, we're beginning to see those benefits come about, and it went into effect in 2017, 2018, but upping that research at the NIH, upping research through NIH grants at our research institutions, and also with the approval process at the FDA, and I will have to say this, I think we learned a lot about that approval process going through COVID and getting a vaccine to the marketplace in nine months.
Senator Blackburn (19m 35s):
These are all the benefits that come from having more attention put on research and development and doing that R and D here in the U.S. so we would not have restrictions. You don't want to restrict access to these new therapies and pharmaceuticals that are coming into the marketplace and also into the biologics that are coming into the marketplace.
Terry Wilcox (20m 3s):
Absolutely. Well, Bob, there she's talking about one of the things that I asked her was, you know, with part D remaining as it is, would there be, you know, there's a lot of talk around price controls and restrictions, would that affect that for part D? And that, that was her answer that that's, you know, one of the reasons why she's trying to, you know, protect part D and not allowing the administration to run rough shot over what has been negotiated there, and what's in place, especially since it's working and it's coming in under budget.
Dr. Bob Goldberg (20m 36s):
Right. The other thing is, you know, once a product is out in the marketplace, as long as it's got its IP, companies have an incentive to figure out if it works in other types of patients, which is also a part of, you know, what the accelerated approval process is supposed to encourage. So with Car T therapies, for instance, we're now seeing, you know, an explosion of studies on how to use immunotherapy, which is less burdensome and more effective in most cases in patients for all sorts of cancers and everything that she spoke about would dry up in a nanosecond if HR 3 was passed.
Dr. Bob Goldberg (21m 18s):
That was a great interview with her, and Terry - good job.
Terry Wilcox (21m 22s):
Well, thank you. We'll be tracking the Protecting Innovation for the Next Generation Act and reporting back to our audience.
Dr. Bob Goldberg (21m 28s):
Now, can I talk about some other big news?
Terry Wilcox (21m 30s):
Dr. Bob Goldberg (21m 31s):
Okay. I got a haircut this week, so that was good. And let's see what else. The Yankees won three in a row. I'm sorry. The wrong script. The other big news you want to talk about today is on accelerated approval, the process which gives many chronic and rare disease patients quick and streamlined access to life-changing treatments. Never the group to stay silent, always filling a much needed gap, the Institute for Clinical and Economic Review, that so-called third party independent review board known as ICER, they issued a white paper commenting on the FDA's accelerated approval process, just so happened to be released a week after the Medicaid Advisory Committee recommended to Congress that Medicaid essentially not pay or get more money for drugs that have accelerated approval until they do the final results.
Dr. Bob Goldberg (22m 27s):
So again, never to stay silent, but at least says something of interest every time he says something, our Patients Rising health economist and good friend, Dr. Paul Langley, looked at how they were undervaluing accelerated approval drugs through healthcare metrics that are both invented and discriminatory to chronic and rare disease patients, so here's Paul's reaction to the white paper.
Dr. Paul Langley (22m 52s):
The first impression was I was disappointed. I found it a surprisingly negative document, particularly given the favorable reception the FDA accelerated approval process has received from patient groups and manufacturers. If a program is successful, my salt would be it must be because it's doing things right. If so, can we make the approval process even more effective to accelerate even more approvals? I say this because there is clearly a crying patient need for these therapies and a significant pipeline across many disease areas.
Dr. Paul Langley (23m 34s):
We must not as this document, unfortunately, proposes, put extra roadblocks to that process.
Terry Wilcox (23m 42s):
Well, he's absolutely right as always. I mean, it was an extremely negative document. What did you think, Bob?
Dr. Bob Goldberg (23m 50s):
It was very negative and there were no pictures in it. So it was in that way totally a waste of time. You know, look, it was an extended opinion piece that from beginning to end, didn't really make a case as to why accelerated approval would harm patients. They didn't look at some of the things that we've looked at on this show, such as how it reduces total cost of care, how it improved, now know of course, a lot of Medicaid patients are also on SSI. So if you want to look at it from a cold-hearted numbers approach, you're actually going to be losing money. And then of course, there's the racial and discriminatory element, which is all these drugs that they're targeting, including, you know, are drugs that would help people of color and would help people with chronic and rare conditions.
Dr. Bob Goldberg (24m 38s):
ICER, you know, has rarely used real world data. It says it's going to, and we can talk about that at another show. And it's really garbage in garbage out, but really even with real world evidence, what Paul has to say about it is that essentially it just invents its own evidence to fit the conclusions. And even if they use observational data, that's the conclusion they're going to come to. So let's see what he had to say about that.
Dr. Paul Langley (25m 4s):
When a drug comes to market, there are usually limited number of clinical trials and no real world evidence to support the claims that are being made. ICER has made its business case from what we call inventing evidence in its simulation modeling for what it sees as a lack of clear claims for cost effectiveness. ICER is not alone. This is a standard technique in technology assessment. However, if you invent evidence by assertion and assumption, you, ICER, are probably the last organization to complain about evidence limits and I mean evidence limits in the real world.
Dr. Paul Langley (25m 46s):
I think it is up to the FDA to determine what it considers the appropriate evidence. I don't just mean by time consuming and expensive clinical trials, but by expanding the remit to real world observational data.
Terry Wilcox (26m 3s):
Well, right, because there's many things, Bob, I mean, you and I both know that don't come to light, obviously until patients start taking drugs, correct?
Dr. Bob Goldberg (26m 14s):
Some of this stuff is not even captured even in the observational data. There's one other flaw in this white paper that you talked about, maybe, you know, expand on that now, because I think it's very, very important.
Terry Wilcox (26m 25s):
You're right. One of the biggest flaws in the white paper and other commentary that obviously comes from ICER is the absence of the patient voice and not just the patient voice, but also the caregiver voices and what value these drugs could have to everyone involved. They give a lot of lip service to that, but they often are rarely if ever actually incorporated.
Dr. Paul Langley (26m 45s):
The ICER business case from my understanding and reading through most of their reports is that they effectively ignore the patient voice. Yes, there is lip service, but none of its evidence report says anything regarding need, need fulfillment in quality of life terms and the contribution of new therapies to this. And in outsiders, importantly, the need, not only of the patient, but of the caregiver. This white paper is equally unconcerned, it's not a question of possible adverse events, what it calls unclear benefits, but a consented attempt to integrate need assessment into the process of approval and the tracking of product impact.
Terry Wilcox (27m 32s):
Well, I mean, that's absolutely true. I mean, we know that oftentimes it will mean even recently, if you look at the last report that ICER released, which was for lupus nephritis, you know, it seemed on the surface to many folks, oh, ICER said the price was fine. You know, it's going to be fine. But then once again, this is the same bait and switch that they did with the cholesterol. I call it the fish oil drug last year where they say, yeah, the price is fine, but the budget impact, you know, only 5% of the people who need this can get it or whatever it said. It's so disingenuous.
Dr. Bob Goldberg (28m 9s):
I mean, it changes all the time and here's something else too, which sort of feeds back to what Paul was saying is that they say that their QALY is the gold standard. Yep. Their failure to incorporate the value preferences of individual patients and caregivers shows that by definition, the measurement of the quality is inherently skewed and flawed and subjective. I think the idea also of the caregivers, which is a tremendous emotional burden on people, to ignore that, to ignore the impact on that and not take it into account, which can be done by the way, is reprehensible.
Terry Wilcox (28m 49s):
Well, and Paul has an interesting new paper. He and Steve McKenna have a paper which we'll link to in the show notes, talking about that, talking about other ways to bring in the patient voice and look at that impact in a more meaningful way. This episode of the Patients Rising podcast is brought to you by Patients Rising Concierge, a new service from Patients Rising that helps patients and caregivers find the resources they need to find stability and support throughout their healthcare journey. From finding a professional advocate, to help with insurance challenges, to legal and tax counsel, to local caregiving resources and so much more, our team is standing by to help you navigate the healthcare system and connect you to the services you need.
Terry Wilcox (29m 39s):
To learn more, visit patientsrisingconcierge.org or email us at email@example.com. Caregivers are obviously extremely important to us at Patients Rising. They're important to the patients that they're caring for. And this week, our Field Correspondent, Kate Pecora, spoke with one of our friends in Colorado, Christine Hutchinson. Christine is the caregiver to her wife, Candice, who has myasthenia gravis. She was recently featured in Colorado politics talking about the drug pricing review board legislation in Colorado.
Terry Wilcox (30m 24s):
And this is Kate's interview with Christine Hutchinson.
Kate Pecora (30m 30s):
Today. I'm with Christine Hutchinson, who is a full-time caregiver to her wife, Candice, who's living with myasthenia gravis and other chronic and auto-immune conditions. It's really nice to meet you, Christine.
Christine Hutchinson (30m 40s):
Thank you for having me.
Kate Pecora (30m 42s):
So usually I speak directly with patients on the segment and I realized that your story is likely so intertwined with Candice's medical journey that you actually offer a unique perspective as an outsider who's unfortunately kind of been lulled into the challenges of chronic disease. And so when you first met Candice, were you aware of her various conditions at the time, and then over time, how did your relationship transform as her health status changed?
Christine Hutchinson (31m 10s):
I actually had no idea until several weeks after meeting her, we actually met at our kickboxing gym and we were doing that together pretty regularly. And we were doing some hiking, lots of outdoor stuff. It's like, nothing could have stopped her at that time. She was just a normal functioning person. And then as time went on, we both had to make the sacrifices and we couldn't go to the gym anymore. We couldn't spend time outside. We had to kind of like take things down a notch. Me personally, I had to learn patience and understanding pretty quickly because it's something I've never had to deal with in my life before.
Kate Pecora (31m 46s):
What are the conditions that Candice is actually living with? How does that kind of impact her day to day life?
Christine Hutchinson (31m 51s):
She has the myasthenia gravis which is the biggest thing. And she also deals with stiff person syndrome is what they call it, where her muscles spasm and sometimes it gets so bad. We had to go to the hospital one time and they had a hard time calming that down. And she also has a lot of auto-immune stuff.
Kate Pecora (32m 12s):
I know that she has mast cell activation syndrome which is one of the auto immune diseases. Right. And so all of those things, it's definitely kind of keeping you guys in the house all the time. Is that frustrating to, you know, have a before time and to have an after time, which is now?
Christine Hutchinson (32m 29s):
It's definitely gotten easier over time. But at first it was really hard for me being as active as we were and how active we want to be. But that's just not what it is for us right now. And hopefully there will be something that can help her to give us a normal life again.
Kate Pecora (32m 47s):
Myasthenia gravis and the other conditions that she has right now, are any of them treatable? And is she receiving treatment for any of them or are these kind of, you know, diseases where there's a course of treatment, but it's not necessarily, you know, going to make you feel any better?
Christine Hutchinson (33m 3s):
Right. It's tIhe second part, there's plenty of treatments and stuff. She does IVG and another medication called Solaris. And she does this every week without fail otherwise we have problems and it's treating the symptoms, but overall there's no like here or long-term solution yet, but we're hoping that that comes about.
Kate Pecora (33m 27s):
So can I ask what exactly the role is that you've taken on to be Candice's caregiver? I realize that there's a lot of reasons why families choose to hire aid or they cut back on hours or they become the sole caretaker. So why was this the right decision for you both?
Christine Hutchinson (33m 47s):
It was the right decision because she just got to a point in her health where I couldn't like take my eyes off of her because I would be worried that something would happen to her. And I had FMLA through my work, my previous job, but I was calling in multiple times a week. And so this kind of just help, you know, take that worry away. And also she has lots of appointments that she can't drive to so I have to drive her. She's been able to stay out of the hospital and she suffers from her symptoms all the time. She stays in bed most of the day because she just can't get out of bed and be active because she gets dizzy. We're both scared of her falling, her lack of muscular endurance because of the myasthenia gravis affects her as well.
Kate Pecora (34m 32s):
Yeah. What were some of the difficulties that you were facing, like with your employer and like being able to get that family medical leave.
Christine Hutchinson (34m 39s):
Getting the FMLA wasn't that difficult thankfully, but it's just calling in all the time and saying I can't come because you know, my wife is sick or whatever. And it put me behind in work and there was a little bit of tension with my counterpart, but it wasn't anything like major.
Kate Pecora (34m 57s):
And when you say like times when Candice was sick, what was that like? I think, you know, like explaining what her conditions were and kind of how those actually impacted her. I know that a lot of her conditions are very serious. So what was it like during those times when it really was a chaotic situation?
Christine Hutchinson (35m 17s):
The biggest thing for us was while all of this was going on, the worst part of her sickness and everything is we were worried about her airway closing, literally her suffocating herself. So I had to be there to keep her airway open or be ready to go to the hospital at any given moment. And it was just scary because I didn't want to get a call while I was at work and, you know, something happened or, you know, stuff like that.
Kate Pecora (35m 45s):
We've had a lot of people who are living with a chronic illness might experience, you know, this feeling differently. Like they might potentially feel guilty that they aren't able to like equally contribute to relationships or that they even need a caretaker in the first place. Right. So, you know, from the caregiver perspective, what was that experience like for you? I know that obviously you had to take on a lot of her medical management, but were there a lot of other things that came with taking on this new job essentially that you weren't necessarily expecting?
Christine Hutchinson (36m 16s):
Yeah, it was kind of, you know, a crash course on learning medical terms. And I had to take on everything from kids, the dog, the house chores, grocery shopping. And I was still trying to work at the time. All this was before I became her caregiver, like a full-time caregiver, I was doing all of these things and it was just so stressful and gave me lots of anxiety, but over time, and at this point, things are a lot better because I've learned what works, what doesn't work.
Kate Pecora (36m 48s):
So the last thing that I wanted to talk about was actually the ongoing impact of the conditions that Candice is living with. How is she doing right now health-wise?
Christine Hutchinson (36m 57s):
Health-wise she's doing well. She's not in the hospital which is a good thing. That's where we don't want to be ever. She's mostly in bed and she's not able to do a lot of things. We don't really leave the house unless she has an appointment or anything like that.
Kate Pecora (37m 12s):
I believe you mentioned you left your job back in 2019. So at this point, have you found any sort of stability since taking on this new role? Has it become normal or is it still, you know, a challenge?
Christine Hutchinson (37m 26s):
It's been our normal, but I've tried to do things like I have a part-time contracting position right now, and I've also done some editing and just picked up some hobbies and, you know, trying to keep busy, I guess, because you know, being home all the time, even with COVID like before COVID being home all the time is hard, especially living in Colorado where it's so beautiful outside.
Kate Pecora (37m 51s):
Yeah. Well thank you, Christine. It was great to talk to you and I really appreciate, you know, kind of hearing your side of the story that we tell so often, but we don't end up seeing, you know, how it's impacting people that are taking care of us and love us through and through. So thank you so much.
Christine Hutchinson (38m 4s):
Dr. Bob Goldberg (38m 7s):
Thank you, Kate. Now it's one of our favorite parts of the show as we get to hear directly from you, the members of the Patients Rising community, and this week we hear from Angela Deeds who shares her struggle to make her voice heard in the doctor's office and her diagnosis of gastroparesis.
Angela Deeds (38m 27s):
My name is Angela I'm from the sixth congressional district of Virginia. And I have experienced medical and seeking treatment for my chronic illness of gastroparesis. I never thought I'd see the day when I had to fight for a doctor to believe that I was in pain and hurting is not the environment I came from. I was always believed until those moments happened can be extremely traumatic and still haunts me in the moment I'm back in doctor's offices, waiting for someone to blame it on my stress or my family history, or just I'm overthinking things.
Angela Deeds (39m 16s):
It's hard enough to be a chronic illness patient in any country, in any office, in any room, but to be gas lit to the extent where you're questioning who knows your body better, makes every day really, really difficult. And the recovery from that takes time. I think the medical system has to take a good, hard look at themselves in the mirror to see if they are having these behaviors and these patterns. And we need to hold them to account for them because it does hurt lots of people.
Dr. Bob Goldberg (39m 48s):
Thank you for sharing, Angela. If you're listening and you have a health care issue or a health policy issue you'd like to let us know about and you want to share your story, you can become a patient correspondent and all you have to do is send an email to me in Terry at firstname.lastname@example.org. That's email@example.com.
Terry Wilcox (40m 20s):
Thank you for joining us for today's episode. If you have just a moment, let us know what you think of the show by leaving us a rating and a review on Apple podcasts. We would so appreciate it. You can also help bring awareness to the issues facing the chronic disease community by sharing this episode with friends and family on social media.
Dr. Bob Goldberg (40m 39s):
And while you're there, give us a follow on your favorite podcast app. We can't give you a shot and a beer, but you'll never miss any of our new episodes.
Terry Wilcox (40m 48s):
Join us back here again next week for the latest in health news, chronic disease stories, and advocacy breakthroughs. Until then for Dr. Bob and everyone at Patients Rising, I'm Terry Wilcox, keep your distance and stay healthy.
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