Making Sense of California’s Healthcare News

Dr. Bob Goldberg (6s):
Meantime, a push to create the nation's only government-funded universal healthcare system failed to get enough support in the State Assembly. It was California's push for Universal Health Care, otherwise known as AB-1400.

2 (20s):
Just think, the best specialists that are in California, if they were civil servants, and their salaries were tied to the government, they would probably leave California and go to more friendly states like Arizona, Nevada, Texas, and Florida.

Terry Wilcox (35s):
Today, what California's health policy news means for patients across the country. From a failed Medicare for-all attempt, to potential legislation that could put the safety of medical equipment at risk. The ripple effects of these health policy conversations, for all patients, are 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 here with my cohost, the guy who gets a muscle cramp just watching the skating competition. I just had this vision of you in little skates with your black t-shirt on!

Dr. Bob Goldberg (1m 16s):
It's not funny!

Terry Wilcox (1m 17s):
He's Dr. Bob Goldberg, co-founder of The Center For Medicine in the Public Interest.

Dr. Bob Goldberg (1m 22s):
You know, it's hard enough to watch the Olympics this year without putting myself in harm's way. Nothing like seeing a 66-year-old guy limping around, because he wants Nathan Chen to do a quadruple something-or-other. So, I am in pain and I would love to talk about the Olympics, Terry, but why don't we move from bobsled racing, which used to be my sport, to health policy debates in the U.S. which are equally as bruising and even less exciting as possible. We're always here to break-down the latest developments from DC, but also the states we'll talk abut in today's show.

Dr. Bob Goldberg (2m 6s):
States have a lot of power in shaping legislation and policies that will affect how people access care. In our past episode, we talked about Oregon. You know, states will find one dumb idea. Or in some cases-

Terry Wilcox (2m 21s):
Or a good idea. Occasionally, it can be a good idea.

Dr. Bob Goldberg (2m 24s):
Absolutely a good idea like banning copay accumulators - That's a great idea. Policy picks up steam in one state and it's replicated by others. So, as I alluded to, both the bad, but also the good.

Terry Wilcox (2m 39s):
Dr. Bob, that's why today we are moving away from cold and gloomy Washington, DC and looking towards sunny California, my former home state, which has been making waves with a lot of health care news that all patients should pay close attention to. First up, a bill to adopt a universal healthcare system for California residents, recently failed. We'll be discussing why this movement hit a wall and what it means for other states that might be on the hunt to adopt a similar system.

Dr. Bob Goldberg (3m 9s):
Right, and then there's the potential for Right To Repair legislation. Sounds great by name - I call it Right To Ruin legislation. If you look at me trying to put together my snowblower, you'll know why. You know, it's a bit misleading, because it would allow technicians, who are not held to FDA safety standards, to operate and repair medical equipment like CT scans, which is a little bit more complicated than my snow-blower, Terry.

Terry Wilcox (3m 34s):
Exactly, and to bring us the news from the Golden State, we're joined by Sally Pipes. Sally is the President and CEO of Pacific Research Institute, which is a California-based think-tank. What you need to know is up shortly, but first this week's healthcare news headlines.

Robert Johnson (3m 54s):
In your health news. People with cancer had to deal with more challenges than others during the pandemic. The findings, in a new report from the American Association of Cancer Research, are not encouraging. According to the report, nearly 10-million cancer screenings were missed from January 2020 to July of that year. Almost all cancer researchers surveyed said the pandemic has set-back their work, while patients reported more isolation, financial stress and food insecurity. A new study says there's no reason for women to delay mammograms after receiving their COVID-19 shots. There had been concern that swelling, caused by the vaccines in the armpit's lymph nodes, could make it look like a patient had breast cancer, but now doctors are advised to interpret that swelling considering the individual patient's risk factors.

Robert Johnson (4m 45s):
The study is available in Radiology, a publication of the Radiological Society of North America. There's a bit of good news today regarding treatment of stroke patients. A new research letter says there are more stroke centers, and more tele-stroke services available in the U.S. now, than was the case 10-years-ago. In 2012, 20% of Americans could not get to a hospital in time to get the treatment needed to head-off their strokes. Today, 91% of people in the U.S. live within an hour's drive of emergency services. First, it was selling books online, then came the ability to buy almost anything. Now, retail giant Amazon, is getting into the health clinic business, announcing the opening of 20 brick-and-mortar clinics this year.

Robert Johnson (5m 27s):
The announcement is part of a plan to expand the company's Amazon Care brand, combining online, and in-person, healthcare. Amazon already has a pharmacy branch, and a cloud business, that targets healthcare providers. That's your health news update for this week, I'm Robert Johnson.

Terry Wilcox (5m 50s):
Now, before we turn our focus to California, let's start with the big health policy updates from Washington DC. We want to quickly close the loop on a past conversation we had on the podcast about Medicare reimbursement for rapid COVID tests. Obviously, this is a population that is at high-risk for infection and adverse outcomes. CMS has announced, that starting in the Spring, Medicare beneficiaries can get reimbursed. What on Earth you're going to have to do to get that reimbursement, remains to be seen. Is it like the click of a button? I mean, what do you think?

Dr. Bob Goldberg (6m 27s):
I don't know. Maybe it's just wishful thinking. Sounds also yesterday. Why would you want to allow people unlimited supply of rapid COVID tests? I don't know. It looks like, at least for my health plan - my Medicare plan, they're giving and starting you with one. They're not going to give you a box of them, right? It looks like there's some limits in place so if you are trying to be a supplier.

Terry Wilcox (6m 51s):
I have to do something. I don't usually defend insurers, but seriously, you can't just have this open-ended send me your receipt. It can't be like that. There's got to be some limitations. I've always said there needs to be guardrails for stuff, even the things that we fight for and against. This is one of those things. You're right - suppliers, whoever. I wonder how many people input addresses into those for-free ones that you could get sent to your house, and are going to pick them up out of their mailbox.

Dr. Bob Goldberg (7m 24s):
You have to submit a claim for reimbursement.

Terry Wilcox (7m 26s):
Reimbursement is different than those free ones from the Biden Administration. All of us can get those, I get that. Anything else going on in DC this week?

Dr. Bob Goldberg (7m 37s):
Well, it seems like each week Build Back Better is turning into Bury Build Back Better, and it gets slimmer and slimmer. In fact, it might be dead. Despite not being able to get this trillion dollar package through, the question is, is there hope for any action on the drug pricing and Congress?

Terry Wilcox (7m 55s):
This actually recently came up in my conversation with Sally Pipes, the President and CEO of The Pacific Research Institute, and she shared her prediction with us.

Sally Pipes (8m 5s):
I think Mansion is right - it's dead, but I think some of the Democratic senators like Schumer, and Wyden from Oregon, want to bring back controlling drug prices, which was in the original House bill. The government would be able to negotiate prices with the insurance companies. This would be a disaster for patients. It would reduce research and development into the new drugs - drug innovation, which America is so famous for, because we don't have price controls. These price controls would be on drugs under Medicare Part D. It would be a disaster for the country, and the world, where we don't have price controls. We develop, whether it's the best in the vaccinations, whether it's a cancer drug, or many therapeutics.

Terry Wilcox (8m 51s):
I think you and I both agree with Sally, Bob, it's going to be very difficult to get anything through, as far as a bill goes. Correct me if I'm wrong, but if they try to do a bill, they need 60 votes. If they do stuff during reconciliation, they could still put in the drug pricing stuff into reconciliation somehow. I think that's the worry for some of the things you don't like.

Dr. Bob Goldberg (9m 14s):
Something to watch, but it's going to be real hard to justify if it was really a function used to raise revenue for this, so they may still want to use that same mechanism, but it may require another score. The fact of the matter is, all the proposals have been so amorphous, that even that is sort of on life- support.

Terry Wilcox (9m 39s):
Yeah, I would agree. I think anything in reconciliation can get through. I always look at HR3 and HR19. HR3 being the Democrat's healthcare bill and HR19 being the Republican's healthcare bill. There is actually overlap on some of the things like maximum out-of-pocket cost in Medicare part D for seniors. The Republicans capped it at 3,100. I think in 2019, the Democrats have done 2000 in HR3. I think there could be a good compromise there. There could be a compromise for out-of-pocket cap for insulin of some kind. It's a watch and see. I don't think they would get the votes, from an innovation standpoint, for the drug pricing negotiation, but you never know.

Dr. Bob Goldberg (10m 27s):
The payment might help. The cap would help, but what also would help, is allowing people to use the coupons for their true out-of-pocket costs.

Terry Wilcox (10m 36s):
Well, absolutely. Another thing that would help, as Patients Rising always points out, is passing on rebates at the pharmacy counter.

Dr. Bob Goldberg (10m 45s):
That's right! Oh no, no.....We're going to use that rebate to fund charging stations!

Terry Wilcox (10m 49s):
Exactly! Another thing in the headlines this past week, from The White House specifically, was President Biden called to relaunch the Cancer Moonshot Program. The name sounds great, but there was no announcement as to where the program would get its funding, and this has many patient advocates, ourselves included, kind of scratching our heads. You sort of put it out there and it was like, "Hey, we're going to relaunch Cancer Moonshot - Go build that". It's like, what is this? This was something that was launched in 2016 during the Obama Administration, then it was sort of sidelined during the Trump Administration, and kind of wrapped-up shop. Now they want to resurrect it.

Terry Wilcox (11m 30s):
Really bold goals in there, Bob, promising to cut cancer death rates in half over the next 25-years. Who wouldn't support that? I guess we can look ahead to see what President Biden says in his State of the Union Address on this.

Dr. Bob Goldberg (11m 39s):
Yeah, maybe that's right. They may have tinkered this. The problem is, they did bring in Danielle Carnival, who was with IMLS. She's running the Moonshot Initiative out of The White House office of Science Technology Policy, except now there's no head of the office of Science Technology Policy. He just left - Eric Lander, so that will probably put a crimp in the consideration of a proposal like that. In any event, the cancer death rates have declined at about twenty-five percent over the last 25-years, which is pretty good. Could we do better over the next 25-years? Yes, if we continue to change the way we do clinical trials and we accelerate access.

Dr. Bob Goldberg (12m 24s):
There's not much more you really need to do.

Terry Wilcox (12m 28s):
You need to focus on the access piece and continued innovation. Anything that's going to squash that is not going to help that goal. If you know Ted Okon, I often follow him for cancer policy on Twitter, and one of the things he says is, the Oncology Medical Home, which was part of the original Cancer Moonshot, and something that was very successful, is now something that's being squashed and sidelined in Build Back Better. Not that Build Back Better has gone anywhere, but it's sort of being sidelined. One way he's wanting to expand, grow treatments and cures, and create this Cancer Moonshot, while simultaneously looking at a program that was successful, especially in the community oncology setting in treating patients where they live and not funding it.

Terry Wilcox (13m 14s):
So, there's some imbalance there.

Dr. Bob Goldberg (13m 18s):
Right. I mean the Moonshot was mostly a mindset, but was an important shift in mindset. Let's definitely give credit where credit is due to President Biden, and his staff at the time, but what still strikes me is that mindset, which we both wholeheartedly endorse, is at odds with this effort to, for example, limit access of drugs that go through the accelerated approval process to Medicaid patients.

Terry Wilcox (13m 46s):
Right. You look at all these little things in policy that they're implementing - Possible use of policies at the VA, and various other things they're doing to stifle access. If you're going to create more innovation, and have more cures, you're going to have more expense, but you're also going to save more people. It's going to be well worth it in the long run. Some of the decisions that are being made, it's not like everybody's pushing the same ball up the hill. He's got a different agenda and different thoughts on certain things, so that's unfortunate. That's why sometimes these plans get bigger.

Terry Wilcox (14m 27s):
You know, these big, huge plans like this can sort of fall flat, because they can never live live up to their expectation, because of all the many parts that create them. So I guess we'll see what he says in the State of the Union. Now let's turn to what's going on in California, or what's not going on in California, I guess we should say. We heard a bit earlier from Sally Pipes, as she commented on the future of Build Back Better, but my main focus of the conversation with her was on California, and what exactly went down with the failed Universal Health Care Proposal, but first, Sally provided a bit of history behind the push for a single-payer health care system in California and why it failed to take off.

Sally Pipes (15m 7s):
Gavin Newsome has said he's a big supporter of single-payer healthcare. That means the government is the only provider of healthcare. There's no Medicare and no Medicaid - It's called Medi-Cal in California, and there's no private coverage. He won the election in 2018. He ran on single-payer. California Nurses Association - the Union really backed him on that. They also backed him in 2021 on a recall campaign, and he survived the recall campaign. In January, Assembly member, Ash Kalra, from San Jose, introduced AB-1400, a single-payer bill, based on the bill that didn't go anywhere in 2021.

Sally Pipes (15m 54s):
It was also based on Senate Bill 562, which came forward in 2017. It was shelved by the Speaker, who is still Speaker now, Anthony Rendon, because it was woefully incomplete, because there was no funding mechanism tied to it. In this case, in 2021, there was a funding bill, Assembly constitutional amendment, was a funding mechanism which would raise taxes. Major taxes - $163 billion in taxes to help fund the single-payer bill AB-1400 and of course this was passed. AB-1400 was passed by the Assembly Health Committee by the Appropriations Committee, and it was to come to a vote on the floor of the Assembly on January 31st.

Sally Pipes (16m 41s):
From my point of view, it was very good news that the Assembly, Ash Kalra, the sponsor of the bill, pulled it before it went to a vote, because he knew he didn't have the votes.

Terry Wilcox (16m 45s):
One of my biggest questions to Sally was, why did this fail in California? We often assume that California is a progressive stronghold, where a policy like this would be easy to pass through, but she explained that when it comes to certain policies, California might be more of a purple state than a blue state. And here's why.

Sally Pipes (17m 5s):
I think the members of the Assembly, their constituents realized this would be a huge tax increase for their constituents. It was going to increase the average household's tax burden by $12,250. I think so many people are leaving California and businesses are leaving California. The last thing the constituents of many of these Democrats wanted was a huge tax increase. The fact is that polls show people in California, and around the country, like their healthcare. They like their employer-sponsored insurance, and they're worried that if it was a government takeover, it would be based on the Canadian system, there would be no private coverage. As a result, the demand for healthcare would be greater than the supply.

Sally Pipes (17m 48s):
We would see the government having to cut-back on the type of care and on the quality of care. We would have long waiting. In Canada today, the average wait from seeing a primary care doc, to getting treatment by a specialist, is 25.6 weeks. That's almost half a year. Care would be rationed. The elderly would have less access to care, which is the way it is in Canada and the UK. There would be a doctor shortage. Just think, the best specialists that are in California, if they were civil servants and their salaries were tied to the government, would probably leave California and go to more friendly states like Arizona, Nevada, Texas, and Florida. We would have to become medical tourists, because if we want access to the best doctors, we would have to then go to these states to get our healthcare.

Dr. Bob Goldberg (18m 39s):
The guy who was pushing it s very tight with the Nurses Union, which for some reason, has been harping on this legislation as a condition for obtaining their support. It's going nowhere.

Terry Wilcox (18m 50s):
Why Bob? What did the Nurses Union have? What's in it for them?

Dr. Bob Goldberg (18m 57s):
You know, there are a couple of things. One is, it's an annuity, but also they are very politically and ideologically motivated. They were a very illogically motivated group. They see it as something that's important to them. I don't think they're disingenuous at all. I think they really, really believe that single- payer is the way to go, and that's what animates this movement.

Terry Wilcox (19m 15s):
That's so interesting, because when Sally said that, I was like, wow. It's not that I don't think the nurses would support it on some level, but to the magnitude that they are supporting it politically, et cetera, I didn't realize that was the case. One of the things that she brought up in that soundbite, that we just talked about - which struck me and I realized it right away, this would happen in any state that tried to ration care and do a full-government takeover. California does have many great institutions for great healthcare, but so does Texas, and so does Florida, and so does Ohio. It would cause people going to other states to get their healthcare, not other countries in this case, but just literally going outside of California and going where they want to go.

Dr. Bob Goldberg (20m 1s):
That's not the only policy news out of California, there's also The Right To Repair legislation, but the name, Right To Repair, is not really truth-in-advertising.

Terry Wilcox (20m 14s):
Well, that's right. Right To Repair is potential legislation out of California. Patients Rising now actually sent a preemptive letter, because last year they had introduced a bill that got squashed. One of the major things is, in theory, Patients Rising is not opposed to The Right To Repair movement in general, for bicycles, et cetera, but when it comes to repairing sensitive medical equipment, we think there should be some sort of standard that they're upheld to, because many of the primary manufacturers of these devices are. That's basically what our stance is. It's not, don't have a medical Right To Repair bill, have one, but just make sure that these companies are held to the same standards that the FDA is the original manufacturer.

Dr. Bob Goldberg (21m 3s):
Yeah. It's the same thing with a non authorized Apple repair. That's a quality control concern. Obviously there's always a monopolistic overhang, but the balance that can be struck is, let technicians do the work, but make sure that they're certified. Nothing wrong with that.

Terry Wilcox (21m 18s):
No, I don't think there's anything wrong with that at all. I think it's simple common sense. It would allow the repair technicians, who are not held to the same FDA safety standards as medical manufacturers, to operate on equipment like CT scans. As it stands right now, that's what they want it to do. While California is our state of focus, it's also a conversation that's popping up. It's popping up in Illinois and other state legislatures around the country. It's something that we're watching. We have a small coalition of organizations and we're watching it. It's on the forefront of legislation at the moment, especially in the device space. We'd like to give a big thank you to Sally Pipes for joining us for today's episode.

Terry Wilcox (22m 6s):
If you'd like to learn more about any of these stories mentioned, head to the links in the show notes. 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 (22m 58s):
To learn more, visit patientsrisingconcierge.org, or email us at askusanything@patientsrising.org. Up next, our field correspondent, Kate Pecora, continues to bring us patient stories from across the country. This week, she revisits an organization she spoke to, for our Veterans Day special episode, Treat Now. Treat Now is a coalition with the goal of connecting veterans, with traumatic brain injuries, with hyperbaric oxygen therapy. This therapy is not currently covered by the VA. She recently spoke with several veterans, including the real Forrest Gump, who have benefited from this treatment. Plus, hear about the legislative efforts underway to expand access for veterans in need.

Kate Pecora (23m 38s):
Today on our show, we have Brigadier General James Barkley. He's a retired Army General, a Vietnam veteran and Desert Storm veteran. He's an advocate for those who are currently serving and all of the families in Indiana who have served. We also have Eric Koleda. We talked to Eric in the past, but just as a reminder, Eric is a 10-year U.S. Air Force veteran. He was a UPS Airline retiree, and he's the Director and the Founder of HBOT for KY Vets, which is a 501(c)(3) nonprofit in Kentucky. He is also the National Director for State Legislative Efforts for treatnow.org, which advocates for hyperbaric oxygen chamber therapy for TBI and PTSD veterans across America.

Kate Pecora (24m 29s):
Eric, can you tell me more about the work that you do and the challenge that these veterans have received when trying to receive treatment?

Eric Koleda (24m 40s):
We estimate there over 877,450 TBI vets across America that have been undiagnosed, misdiagnosed, or a combination of not properly diagnosed by approved medical staff, or diagnosed with PTSD without having the MRI brain image to validate that they have a physical brain wound, verses just PTSD. You have a legal and medical right to ask for an MRI brain scan, if you have experienced any of the above in combat, in training, and have had multiple head hits. One of the major issues that TBI veterans have historically not been properly diagnosed and have not been provided informed consent by the VA DOD.

Eric Koleda (25m 22s):
The Code of Medical Ethics Opinion 2.11 states: Tell patients of their diagnosis and that patients understand the nature and purpose of the recommended interventions. Most importantly, that patients are made aware of the burdens, risks, and expected benefits of all options. This includes both on, and off label, treatment modalities available to TBI vets, which includes hyperbaric oxygen therapy.

Kate Pecora (25m 47s):
General Barkley, could you explain to me what HBOT is? I know hyperbaric oxygen treatment is the acronym for HBOT. Could you explain to me how it works? Tell me why it's good and what difference it makes when this oxygen is in your body?

General James Barkley (26m 7s):
It's so good for you, because oxygen and glucose provide the energy to your body to help you live. To help you sustain life and grow, improve and function. A great example, that I've often used is around Thanksgiving. We have these wonderful big turkey dinners and everybody is stuffing themselves and having a great time. We then watch football games, and before you know it, everybody's snoring. What's happening there is the oxygen is going down into your stomach and not enough oxygen is going into your brain and you snooze off. If we have a lot more oxygen in there, like they do in all the casinos, they keep you alert and awake and guess what?

General James Barkley (26m 55s):
You spend more money on those slot machines or that blackjack table. So that oxygen just stimulates you. Now, the real reason that we're so interested in promoting this, is that it's very important to heal you. If you have an injury anywhere in your body, if we can get more oxygen to that area, it will heal faster. In fact, hyperbaric oxygen therapy, at higher pressures, will actually draw stem cells out of your bones and add to your bloodstream and they'll deliver those special stem cells to an injured part of your body so it heals better.

General James Barkley (27m 34s):
That includes your brain. What Eric and I believe, and it's been proven is, that people who have concussions or those people in the military who've been exposed to IEDs, allowed artillery shells firing, weapons and things, the brain gets damaged. It gets damaged by shock waves that we can't see, but you can feel.

Kate Pecora (28m 4s):
How can people become more involved in some of the legislative efforts that would be able to support this type of therapy and make it more widely available and accessible?

General James Barkley (28m 16s):
On the macro level, Jim and I, along with a group of other Bedford advocates, are helping legislate all over the U.S. state by state, and we're also legislating in the U.S. Congress trying to get bills passed that would support TBI, PTSD vets receiving this treatment and having it paid for by you, the VA, the DOD or the government. That's the ultimate end-result we're trying to attain here. Make hyperbaric therapy a standard treatment protocol for all TBI, PTSD vets. For the standard vet or a citizen in the U.S., we have just a little under 20-million veterans in the U.S.

General James Barkley (28m 57s):
right now and we're asking them to stand behind the hyperbaric oxygen therapy.

Kate Pecora (29m 4s):
I also had the pleasure to get on the phone with Sergeant First Class, Sammy Davis, and his wife, Dixie. Sammy received the Medal of Honor for his heroism in Vietnam. He is actually, literally, the person you see receiving the medal from President Johnson in the movie, Forrest Gump.

Sergeant First Class Sammy Davis (29m 22s):
I swam across the river to bring my brothers back, and Forrest just took him to the river's edge, but in reality, I swam across the river to get my brothers, and I was shot in the buttocks. In the movie, when Forrest is being presented the Medal of Honor, that is my actual body, the President, and everything is real, they just put Tom's face over mine.

Kate Pecora (29m 56s):
So when you came home, you had a number of experiences to consider and some of the impact of your injuries, right? How did the hyperbaric oxygen treatment play into your ability to recover somewhat?

Sergeant First Class Sammy Davis (30m 6s):
When it was done, and we get up to walk out, and as I'm walking out, I thought wow, my body hurts less. I was amazed at it. It was many years until I got the opportunity to start going through the hyperbaric chamber again. It's amazing how much it makes my body hurt less. It clears my mind. It's amazing. One of the things it helped with is my nightmares. I've had nightmares for all these years and I couldn't get out of it.

Kate Pecora (30m 32s):
Dixie also had the opportunity to receive hyperbaric oxygen treatment. She went along with Sammy a few of the times that he went to receive treatment and she shared some of her feedback, just as a kind of lay person, who hasn't had the opportunity to receive this. She had some thoughts about what it did to improve Sammy's care as well.

Dixie Davis (30m 57s):
For both of us, kidney function was better. He said for Sam, being diabetic, it's amazing how well his kidneys are doing. He also could take so much less medicine than he ever had before.

Kate Pecora (31m 14s):
Tell me about how access has been in terms of being able to receive these treatments. A big part of what we're talking about is the expansion of the service across the U.S.

Dixie Davis (31m 29s):
I know how much the VA has prescribed for Sam for the last 55-years. Everything they tried to fix with drugs, mainly numbing to get him to sleep and for pain, and nothing has worked. It just did not work. I think it's all they knew at the time, but now there's something, that if they would do this for all veterans - I don't care what age, because Sam is 75-years-old, and look what it's done for him after having his injuries 55-years-ago.

Dixie Davis (32m 16s):
They would save millions of dollars on medication treatment they have to have. They're reoccurring, because they do not get well from what they're doing. I am a proponent that all veterans have this. If Medicare, or insurance companies would cover all of these different elements, it would be the best thing ever. Instead, they're paying all these dollars for things that don't work and they're addictive. All these medications are addictive, so we have veterans with PTSD that don't get better.

Dr. Bob Goldberg (32m 52s):
Thank you, Kate. Now it's that time of the show where we get to hear from the members of the Patient's Rising community. Here is this week's patient correspondent.

Michelle (33m 4s):
This is Michelle. You may know me as Mama Bear for Rare on social media. We live in New Jersey and we are in the 11th District. My daughter, Hailey, was diagnosed with a rare disease, or a rare disorder, called Jordan Syndrome, which is a genetic mutation on the gene PPP2R5D. We are so lucky and blessed that we got a diagnosis at such a young age, so that we were able to help her the best that we can. There are so many obstacles though, when trying to help our daughter. Everything seems to be a fight with insurance. Simply asking for things that will help her be a more successful individual in our society shouldn't be such a fight all the time.

Michelle (33m 50s):
In fact, it should be easy. It should be equal. It should be fair, and it should just be. Going to a park for instance, is also something that should just be. It shouldn't be a fight. It shouldn't be unfair or unequal for a child with a disability, in a wheelchair, to feel excluded from their peers. Our society has a little bit of work that they still need to do. I believe, and I know as Haley's mother and advocate, that I will do whatever I can to help change those things. So I hope that our society will take a look at what needs to be changed, and fixed, and make those things happen.

Dr. Bob Goldberg (34m 42s):
Thank you for sharing your story with us today, and we want to hear more of you, and from you. If there's a health policy issue impacting you, and your access to care, talk about it right here on the podcast. To get started, send an email to Terry and me at podcast@patientsrising.org. That is podcast@patientsrising.org.

Terry Wilcox (34m 59s):
We're so glad you joined us for today's episode. We want to hear what you think of the show. Let us know by leaving us a rating and a review, you can also pass the episode along to friends and family on social media. This helps us grow the podcast and raise awareness for the issues and solutions for the chronic disease community.

Dr. Bob Goldberg (35m 17s):
Don't forget to follow us on your favorite app. It's free, and you'll always get the latest episodes delivered straight to your mobile device.

Terry Wilcox (35m 24s):
If you want to read up on more patients' stories, and get a deeper look at the healthcare access issues facing patients, we have a weekly newsletter that covers it all. Find the link to sign up in the show notes. And don't forget to join us right back here again next Friday. Until then, for Dr. Bob, and everyone at Patients Rising, I'm Terry Wilcox - Stay healthy!