March 4, 2022

How Hospitals Get Rich Off Your Prescriptions

How Hospitals Get Rich Off Your Prescriptions

How can low-income communities afford costly medications? A government program called 340B, which was originally created to help low income patients, now generates significant income for hospitals. Find out what caused this program to falter and how Congress can get it back on track with today's guest speaker Dr. Bill Smith. Dr. Smith, the current visiting Fellow at the Pioneer Institute, talks with our hosts Terry and Bob as we dissect what is at stake for low- income patients and their ability to afford prescription drugs. 

To catch you up on all the latest health care news, take a listen to Terry and Bob as they provide weekly updates on what's happening in Washington. From the Affordable Insulin Now Act to understanding the debate on employer-sponsored care, we have the news all chronic disease patients and advocates need to know today. 

We also hear from Alyse as she shares her story on costly over-the-counter vitamins needed to treat a calcium deficiency. 

Hosts: 

Terry Wilcox, Executive Director, Patients Rising

Dr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public Interest

Kate Pecora, Field Correspondent

Guests: 

Bill Smith, Ph.D., Pioneer Institute’s Visiting Fellow: Life Sciences

Alyse, Patient Advocate

Kimberly Gonzalez, Patient Correspondent 

Links: 

340B Drug Pricing Program | US Health Resources & Services Administration 

‘We don’t know how to survive here’: a cancer ward for Ukrainian children under seige

​​Medicare Part D 

Davis, McEachin Introduce Bipartisan Legislation to Prevent Increased Prescription Drug Costs - Congressman Rodney Davis

Season 3 | Episode 7: Meet the Healthcare Mafia (And How to Stop It)

Bennet, Warnock, Colleagues Introduce New Bill to Cap Costs of Insulin in Colorado, Across the Country | Press Releases | US Senator Michael Bennet

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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.

Transcript

Dr. Bill Smith (6s):
The way the hospitals have treated this program, it's a revenue source for them now's. It's not a program to help them treat low-income, uninsured patients.

Terry Wilcox (15s):
A government program designed to help low-income patients afford drugs, has grown exponentially, but as the 340B Program balloons, vulnerable patients continue to struggle with the cost of care. Where did this program go wrong and how can it be reformed to better serve patients? That's up next. Welcome to the Patients Rising Podcast. I'm your host, Terry Wilcox, Executive Director of Patients Rising. A hundred-thousand member-`strong organization of patients with chronic illness. I'm here with my cohost, Dr. Bob Goldberg, Co-Founder of The Center for Medicine in the Public Interest.

Dr. Bob Goldberg (51s):
Hey, good afternoon, Terry. You know every week we talk about the healthcare policy news and issues that affect how, and whether, millions of Americans with chronic conditions will get access to the care they need.

Terry Wilcox (1m 5s):
Healthcare access is healthcare affordability. A government program called 340B originally set-off to make prescriptions more affordable, to low-income and uninsured patients. It was a good program. It did this by requiring the drug industry to supply medicines at a large discount to hospitals that cared for low-income patients. The thought was that it would keep costs down for vulnerable patients, but fast-forward to today. Loopholes in the law, and expansions of Medicare, have caused the program to derail from its original mission.

Dr. Bob Goldberg (1m 41s):
Yeah, what a surprise, Terry, that a program meant for the poor, becomes a cash-cow for hospitals and 340B pharmacies, which are run by PBMs, in the wealthiest of neighborhoods. And why? Well, the hospitals buy the drugs at a discount and they send a bill for the full amount to a patient's health insurance. It's a profit-stream for hospitals, and Congress, no surprise, has not done much to reign-in the program, and focus it on helping the poorest people, as it was originally intended.

Terry Wilcox (2m 14s):
Our guest today walks us through everything you need to know about 340B, including how it strayed from it's original mission, the role it plays in higher healthcare costs and what reforms can be made to get it back on track. He's Dr. Bill Smith, Pioneer Institute's, visiting Fellow in the Life Sciences. He will soon be releasing a new paper that analyzes the program and provide suggestions on how Congress can improve it. He joins us shortly, but first, this week's healthcare news headlines.

Robert Johnson (2m 45s):
In your health news. If you thought the pandemic was a headache the last two years, imagine the work it will take to unwind a tangle of temporary policies and programs implemented to battle the virus. STAT News considered some of the decisions that will need to be made soon involving Medicaid, payments to help struggling hospitals, regulations providing more flexibility for telehealth services and even some vaccine authorizations. The White House has another new plan to address COVID-19 concerns, but it doesn't declare an end to the pandemic. The latest strategy wants to expand access to therapies and improve ventilation and indoor spaces. It recommends programs to help families deal with the cost of treating long COVID symptoms and proposes money to pay for funerals and bereavement support.

Robert Johnson (3m 33s):
Try as he might, the President is not winning votes for his work to fight the Corona virus. A new poll from the Kaiser Family Foundation says a meager 39% of voters would describe Biden's pandemic response as excellent or good. It's the latest of several polls reflecting the President's pandemic problems. Finally, today, the FDA is moving ahead with a long awaited regulation banning menthol cigarettes. The announcement is good news for public health advocates who argue menthol flavored tobacco products, target people of color. The big concern now is the fate of the rule at the Office of Management and Budget. The agency is responsible for reviewing proposed rules, but it's widely considered in Washington to be the place where regulations go to die.

Robert Johnson (4m 18s):
That's your health news update for this week, I'm Robert Johnson.

Terry Wilcox (4m 28s):
Okay, Bob, before we get started on our banter this week, I would like to obviously mention what's going on in Ukraine, the brave Ukrainian people and what they're enduring. Most importantly, from our perspective, from Patients Rising's perspective, the patients in Ukraine who right now are not able to get their chemotherapy, or cancer treatments, or the healthcare that they need, because there's a war going on in their country.

Dr. Bob Goldberg (4m 58s):
You know, if you've read anything of the bombing of London in World War II, you're sort of struck by the fact that during bombings, and during war, people are still delivering babies. They're still being treated for chemotherapy. They're still being treated for other chronic conditions. For most of the people in Ukraine, and most people in London, that was disrupted, but not as much as you think. There are people there, truly first-responders, making sure that the supplies, and the care, is made available. In particular, there are kids all across Ukraine that go to two or three specialized children's hospitals for chemotherapy or cancer.

Dr. Bob Goldberg (5m 43s):
People are still trying to make that journey, working with all the different charitable organizations that are supporting Ukraine, to make sure that that's possible.

Terry Wilcox (5m 54s):
Thank you for that, Bob. I think it's really great to put those links in the show notes so that folks can find some organizations that they may not have heard of, that are specifically helping patients. Now let's turn to Congress and how lawmakers are addressing prescription drug access and affordability. Just this past Tuesday, President Biden visited lawmakers on Capitol Hill for the State of the Union. While his agenda, otherwise known as the Build Back Better Plan, is stalled, we thought we'd take a look at some of the bipartisan healthcare legislation that might squeak through in the coming months. The HELP Copays Count Act doesn't have as many signers as we'd hoped it would have, but we are pushing on the HELP Copays Count Act, because we believe that it is something that the copays, the rebates, all of that, should be to the benefit of patients and not to the benefit of PBMs.

Terry Wilcox (6m 50s):
Just to point out why we're talking about the HELP Copays Count Act is because, with the infrastructure bill, basically the Trump Administration had put into place rebate pass-through in Medicare Part D that was supposed to start, I believe next year it was supposed to start, January 1st, 2023. They kicked the can down the road for it not to start until January 1st, 2026, because they wanted to use that rebate money to pay for Tesla charging stations, which is what Bob and I like to say, that's what they're paying for. They would tell you, oh no, we're paying for other healthcare expenses, or whatever. The truth is, there's no way to really know.

Terry Wilcox (7m 31s):
It's going into a general pot and it's paying for whatever is in that bill. Then the Build Back Better plan, if it were to pass, or would have passed, basically takes that rebate pass-through rule and kills it forever.

Dr. Bob Goldberg (7m 47s):
Well, you know, I'll tell you what the theme is here, Terry. We need sensible benefit design. That's what it boils down to. We get all these different proposals from so many different directions. The Warnock Bill to cap the amount that you pay per prescription for insulin, people aren't supporting that, because we want the whole Build Back Better Bill to pass. We haven't talked about patients for Arnold Dough in quite a while. I think we should.

Terry Wilcox (8m 17s):
You mean Patients For Affordable Drugs? Our friend, David Mitchell at Patients For Affordable Drugs?What was very interesting, when the Warnock Bill came out, David Mitchell's Twitter feed was like, we really shouldn't be doing this Warnock Bill. Don't support this Warnock Bill, because we need to get everything through. Meaning he wanted to get negotiating with Medicare through. This capping of seniors out-of-pocket costs. He wanted to get the whole Build Back Better proposal through and he thought that siphoning-off this support for insulin would not help that. Here's what I say to that, "Shame on you for that". "Shame on you". Shame on any organization that would look at a pro-patient item like this, that would immediately help diabetics, right?

Terry Wilcox (9m 7s):
Influence one of the calling cards of bad supply-chain, mismanagement of rebates, and everything else, and say you can't. We're not going to vote for that. We're not going to vote for that pro-patient legislation, because we have an agenda. We're too partisan to do that. We're too partisan in our agenda. That is not good management of a pro-patient organization to be doing.

Dr. Bob Goldberg (9m 33s):
This is an organization that is pursuing a mindless agenda in support of the PBMs. In support of the ability of Medicare, and other independent entities, including ICER, to decide what drugs people will be able to use and how much they'll pay. They haven't added one thing that would enhance the ability of patients to access medicines since their inception. Look, perfect is the enemy of the good. It's not everything that Patients Rising would want, or I would want, but it's a step in the right direction.

Terry Wilcox (10m 5s):
Now let's focus, and talk about today's show, which is 340B. As we mentioned earlier, 340B was started to help low-income and uninsured patients. It set out to do this by requiring manufacturers to sell drugs at a discount to hospitals that care for these patient populations. However, it's morphed into a major revenue stream for hospitals, and patients are still struggling to afford medications. I spoke this week with Dr. Bill Smith of the Pioneer Institute. He has a new paper that will publish soon on why 340B has turned into a dysfunctional program. He explained how it transitioned from a program meant to do good, to a hospital revenue source.

Dr. Bill Smith (10m 45s):
Again, I can't stress enough what a good program it was originally, because they were helping a lot of hospitals that were treating uninsured patients. What happened is, the Congress wrote the loss so poorly, they didn't define which patients should be eligible for these deep-discounted drugs. They didn't require that if the hospital secured a bunch of revenue by giving these discounts, that they treat uninsured patients with that. So what the hospitals did is, they get these deep-discounts and they decided, hey, we can arbitrage this. What I mean by that is, we can move into wealthy neighborhoods. We can use these discounted drugs to treat certain patients that have good insurance or Medicare.

Dr. Bill Smith (11m 33s):
Then we only pay 25 cents on-the-dollar for each prescription, but we can then bill the patient's health insurance, or Medicare, for the full amount and we can keep the spread. It became an enormous revenue-source for these hospitals. Hospitals intentionally expanded their satellite sites into wealthy neighborhoods, because they knew if they had a lot of insured patients, or Medicare patients, they'd be getting a lot of revenue to keep the spread. So the program exploded, because of that reason. Their common sense reforms they could make, that would simply just require, for example, that any hospital sites have to be in low-income neighborhoods.

Dr. Bill Smith (12m 14s):
That patients that share in these discounts, or to get discounted drugs, have a certain low-income. Congress, in its wisdom, hasn't made any of these reforms.

Terry Wilcox (12m 28s):
That's true. There is no bigger mess than the 340B Program. You know, even though it's not direct, you can't do the direct line. It is completely part of the problem in the rising list-price cost of medication.

Dr. Bob Goldberg (12m 50s):
Well in 2019, the 340B Program generated $30 billion in revenue - $30 billion. In 2020, it was $38 billion - that's about a 27% increase. 2021 and 2022, I'm sure it's going to continue.

Terry Wilcox (13m 1s):
That's a lot of money.

Dr. Bob Goldberg (13m 3s):
Which could be passed to patients!

Terry Wilcox (13m 6s):
Which can be passed to patients and should be passed to patients. Bill also pointed out another inherent issue that hurts healthcare affordability for patients, here, so take a listen.

Dr. Bill Smith (13m 16s):
There's no requirement under the law that the discounts be passed-on to patients. So, a patient can come in and the hospital can get a deep discount on this drug and the patient can still be required to pay a large co-insurance payment, or a co-payment. Sometimes that even eclipses the price that the hospital was paying. The program is in desperate need of reform. I'm personally a supporter of the program. I think hospitals that treat low-income patients, or uninsured patients, should have some concessionary discounts, but the way the hospitals have treated this program, it's a revenue source for them now. It's not a program to help them treat low-income, uninsured patients.

Terry Wilcox (13m 57s):
And therein lies the problem.

Dr. Bob Goldberg (13m 59s):
Yeah, just a quick point, to show you what the spread is. The IQVIA lists some of the list-price of all the purchases as $80 billion, 80. That's about 16% of pharma industries total gross sales at list-price. That's huge, but the actual revenue is $38 billion, so that spread is ginormous.

Terry Wilcox (14m 26s):
That's insane. Part of it also, Bill and I talk a little bit about this, or Bill does, is everybody owns everybody. Like, they're buying the doctors, and they own the pharmacies, and they own the hospitals, and they own the insurance plan, they own PBM, they own this. Then things happen, like a patient that we're working with right now, is a young mom, who unfortunately got cancer. She had no health issues and was on sort-of one of those that is like, don't get a short-term plan, because it can have waiting periods, and things like this. Well, it turns out it did have a 30-day waiting period for pre-existing conditions.

Terry Wilcox (15m 7s):
They considered ordering a mammogram, even if it was routine, was a pre-existing condition. There's all kinds of crazy loopholes. She got the mammogram, the actual mammogram, on the 29th day. She hadn't been diagnosed with anything and then she got diagnosed with cancer after that. Everything kept being covered. The hospitals kept saying, you're covered, you're covered and everything kept going along and along and along. At the end they said, we're not covering any of this, because you didn't meet our 30-day thing. Here's our little fine print of our 30-day. It's awful. It makes my stomach turn just even telling the story. Then she said, can I get a cash-price for the chemotherapy, because she got a $110,000 bill.

Terry Wilcox (15m 49s):
They said, no, we have already given the cash-price. We already did that through the insurance. We already gave the discounted-price that we could give to the insurance, and this is your price. Huh? In my mind, now she's a charity patient, because you can't just send her a $110,000 bill, when we know for a fact that you, as a 340B hospital, did not pay that. It really makes me sick. One of the other areas, where the 340B Program has ballooned, is with contract pharmacies. Many of which, our patient listeners likely have experience with. Bill explains what they are and how it's helped for-profit pharmacy chains profit off the discounted drug program.

Terry Wilcox (16m 37s):
Another thing that turns my stomach. Take a listen.

Dr. Bill Smith (16m 41s):
So it used to be when the 340B Program was first enacted, that Congress simply said that you can have one pharmacy at your hospital where a patient can go and get these discounted drugs. The hospital had to have an in-house pharmacy. If they didn't have an in-house pharmacy, they could contract with one pharmacy outside, where all the patients could go to get these discounted drugs. Again, in its wisdom, the federal government decided, a few years ago, that they were just going to have an unlimited number of pharmacies that could give out these 340B drugs. A hospital now can contract with hundreds of pharmacies in the area which can dispense these discounted drugs.

Dr. Bill Smith (17m 27s):
Again, many of these pharmacies are for-profit pharmacies and they're keeping a good reimbursement, a very healthy reimbursement, like healthier than they'd get from Medicare or Medicaid or any other program, because they are giving out these discounted drugs on behalf of the hospital and the hospital's making money. So the contract pharmacies are a real problem, because this is a drug- discount program for uninsured people. It's not supposed to be a program that benefits for-profit pharmacy chains. The for-profit pharmacy chains are making a lot of money by giving out these discounted drugs on behalf of hospitals.

Terry Wilcox (18m 6s):
Doesn't that turn your stomach, Bob?

Dr. Bob Goldberg (18m 7s):
Yeah, and here's one more turn. A commercially insured patient, when they pay for the drug from a 340B pharmacy, they're covering one-third of a total profit earned by the 340B hospital in the contract pharmacy. That really is nauseating. The other thing that may be nauseating and troubling is, Bill talked about all these different contract pharmacies, but they're all being bought-up by the three largest PBMs. The fastest growth in pharma revenue for these PBMs, which are now part of insurance companies is.....What program Terry?

Terry Wilcox (18m 47s):
340B.

Dr. Bob Goldberg (18m 47s):
That's right! 340B.

Terry Wilcox (18m 49s):
I mean, who knew that a charity program would be such a hot revenue item for these Fortune 5 PBM insurance companies. It's really unbelievable. The grief they all give pharma, I mean, honestly. 340B is also a concern for community oncology practices, which are already on the decline. As more oncology practices are being acquired by hospitals, the prices for healthcare services in the oncology setting are going up, and here's why.

Dr. Bill Smith (19m 21s):
So the typical oncology drug averages about $100,000. If a hospital, through the 340B drug discount program can buy that drug for $25,000, not $100,000, not the list price, they can buy it for $25,000. Then a patient comes in, in a wealthy neighborhood, and goes into the hospital's satellite clinic and takes this oncology drug, that only costs the hospital $25,000, the hospital can then bill that patient's insurance company for a $100,000. They can take the $75,000 and put it in their pocket.

Dr. Bill Smith (20m 1s):
There's a great incentive for hospitals to start buying-up oncology practices, particularly in wealthy neighborhoods where people have good insurance or they have Medicare. That's really, really a threat to this community-based care, because the hospitals are buying oncology practices and then charging what a hospital charges, which is typically more than what a community-based oncology practice might charge. It's driving up the cost of healthcare, and the hospitals are just benefiting hand-over-fist by keeping this spread between what the insurance company, or Medicare will pay, and what they're actually paying for the drug. It's a huge incentive for them to buy oncology practices, or any physician practices where you have specialty drugs, that are somewhat expensive, where they can arbitrage the discount.

Dr. Bob Goldberg (20m 50s):
I'll tell you, Terry, that's a great insight by Bill. It didn't occur to me that, because so much of the spread is taken by the contract pharmacies, part of it goes to the hospitals. The only way for the hospitals to increase their margin, or their cut, is to buy-up practices which can bill at a higher rate for these medicines.

Terry Wilcox (21m 12s):
The whole thing is very disheartening.

Dr. Bob Goldberg (21m 14s):
Well, what can we do?

Terry Wilcox (21m 16s):
So far we've covered all the pain-points of the 340B Program, but not the solutions to get us back on track. There's a large consensus, within the healthcare community, that 340B is a good program, but needs some guard-rails to ensure that it's properly serving the patients who need it most. I asked Bill what can Congress do?

Dr. Bill Smith (21m 37s):
Well, one, this is a drug-discount program that was intended to help low-income, or uninsured patients, so why not have Congress require that only certain patients with a certain income, or lack of insurance status, could benefit from the drug discounts. Right now, a millionaire who lives in Concord, Massachusetts, a very wealthy town in Massachusetts, can go in and get the drug discount. That just shouldn't happen. Moreover, hospitals are getting a great deal of revenue for this. That's fine. Hospitals are usually good community citizens, but they should be required to take the money that they're making from this drug-discount program and put it into programs for low-income or uninsured patients.

Dr. Bill Smith (22m 21s):
There are some common sense reforms just allowing hospitals to get drug discounts is not enough. They need to write the language more tightly so that the people that they intend to benefit actually benefit.

Terry Wilcox (22m 41s):
Another reform would be greater transparency. We're huge advocates at Patients Rising for transparency.

Dr. Bob Goldberg (22m 44s):
Put those spread-up on some billboard somewhere. It really is quite remarkable. In the context of everything else we've talked about, it sort of sticks out. Of all the things we've talked about, we've talked about a lot of the kickbacks, this is the kickback of all kickbacks. Apparently, from what I've read, the fastest growth in retail sales for pharmaceutical is not the pharmacy, and it's not the outpatient center, it's the 340B Program.

Terry Wilcox (23m 11s):
Which is just insane. Here's what Bill had to say on transparency. Take a listen.

Dr. Bill Smith (23m 16s):
To pour into a very minimum reform that could happen, one reform that could happen is they just have transparency. How much revenue are you getting from the 340B Program and where are you spending it? That would be a reform where we'd get a little sunshine onto this program. Right now, hospitals don't disclose how much revenue they get from 340B, nor do they disclose how they spend it.

Terry Wilcox (23m 45s):
Yet they all want Patients Rising's 990. Like here you go. Where is the transparency here?

Dr. Bob Goldberg (23m 58s):
Where is your 340B cash, Terry?

Terry Wilcox (23m 60s):
I don't know. You have no idea. Head to the show notes for links on all the stories we covered today. 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 council, 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 (24m 51s):
To learn more, visit patientsrisingconcierge.org or email us at askusanything@patientsrising.org. Patients Rising Podcast field correspondent, Kate Pecora, each week speaks with patients and patient advocates. Here's her conversation with Elise, who lives with a calcium deficiency. She highlights the difficulties for many patients who struggle to afford over-the-counter vitamins and supplements. Take a listen.

Kate Pecora (25m 11s):
Today, I'm talking to Elise. Elise is going to share her story living with a rare condition. She's talking to us about the cost of medications, specifically over-the-counter drugs, which can be incredibly expensive, even though they are over-the-counter therapies like vitamins. Could you start out by telling me a little bit about yourself, what conditions you're living with, how your diagnosis journey and the treatment journey you've been on, has impacted your advocacy work that you're doing right now.

Elise (25m 42s):
I have a handful of rare diseases. Even giving birth to my children. Everything has been rare that nobody else has seen it in a lot of things. One day, all of a sudden, I was in terrible pain and couldn't figure-out what the pain was from and went from doctor to doctor. It was like in my hip bone, and I went to several different doctors, and they did a bunch of different blood tests, and nobody could figure-out what was going on. I happened to be at an orthopedic surgeon and had all my tests with me. It was before you could probably pull everything up online, so I carried around my little portfolio with my testing things.

Elise (26m 29s):
I said to him, I can't get into your office, because you have to take a step. He looked at me, and he's like, that just decided exactly what you have orthopedically. Then he said, and this is the orthopedic doctor, and he wanted to look at all my blood work and everything. He's like, well what's going on with your PTH, which is parathyroid hormone. I said, I don't know, my doctor just told me to watch it for awhile. He's like, are you sure he should be doing that? I said, they just said, you know, just watch it. My calcium was normal, so from there, I went to my girlfriend's house, who coincidentally happened to have surgery on the same thing.

Elise (27m 11s):
She didn't tell people, because she thought that she was in a business, and didn't want people to not come to her, thinking she had a terrible disease. I told her a little bit about it and she said, you have to go to my surgeon now, and literally I canceled three separate appointments. Then she came and picked me up one day, and she's like, I made this appointment and I'm taking you. I had all the tests. I had ultrasounds, and I had MRIs, and I had everything to see about my parathyroid hormone and everything was negative. I go there, and it was a teaching hospital, and they all came and started pushing on my neck.

Elise (27m 50s):
So by the time I got home, I was in pain from that. They said, 100 percent, you need to have the surgery. I said, there isn't one fact that shows that I have anything. He said, once your parathyroid hormone goes high, there's a reason. So if it ever happens, even if it goes down again, there's a reason. I said, but that's not what even my endocrinologist said. He said, I'm telling you, you need to have the surgery.

Kate Pecora (28m 22s):
So could you walk us through what happened after your surgery and how the events that followed led to the discovery of the low calcium levels that you have.

Elise (28m 33s):
In the morning, my heart-rate was off the charts and they came flying-in actually with the paddles. They had given me a Valium, and it had calmed-down enough, and they didn't think anything of it. I went home and had a horrible couple of days. I literally went down to the doctor's office, the surgeon, and just sat there until he could take me. I didn't even call. I couldn't get an appointment, so I went there and I just waited for him to take me. Because of my age, he said to me, oh, all these symptoms you're having, it's menopause. You're probably going through menopause. I'm like, so five days ago before I had the surgery, I wasn't in menopause, but all of a sudden I'm in menopause now?

Elise (29m 19s):
He said, yes and called my gynecologist and said, go straight to her office. She's going to put a patch on you. I'm going to do blood-work to prove it too. I get to my gynecologist's office and usually you wait an hour-and-a-half. They grabbed me and took me back and put a patch on my stomach. With that, the doctor called and they said, go to the hospital. Your calcium is insanely low and you need to have an infusion. So automatically, because of my age, he didn't want to think of anything else except decide that I was in menopause.

Elise (29m 59s):
I hadn't researched. A lot of these people, cause I'm on Facebook groups with a lot of people who are going to have the surgery, but I didn't check anything-out, because my girlfriend who had it, the second she had the surgery, she was a hundred-percent fine. I never once thought that something could go wrong afterwards. I had just had a large abdominal surgery from how it had gotten hurt. So this had gotten diagnosed by mistake. If I hadn't gotten hurt, and they didn't have to do all the blood work, we would have never found this.

Kate Pecora (30m 34s):
So what is it like to live with a calcium deficiency? What are some of the symptoms you experience day-to-day, what's that like?

Elise (30m 41s):
It's been a very, very difficult few years, more than a few years already. Through it, I realized there was no way for me to work, because when I would wake up, I'd have no idea how I would feel and how long it would take for the calcium to get in me. There's a weakness, and a fatigue, that comes with it. Fatigue is one thing, but the weakness is like, there's no way I can possibly move my legs to even stand-up. Just major exhaustion. Even more intense, I think, then the first three-months of being pregnant. It's a different kind of exhaustion. I would be sitting at work and all of a sudden it'd be like, I have to rush-out to take more calcium and that calcium isn't working.

Elise (31m 33s):
You can't do that at a job. I couldn't make it going a full day. It got to a point where I had no choice, but to go on disability. I tried doing other things, and when you don't know how you're going to wake- up in the morning, and how it's going to be two-hours later, or how it's going to be if it's hot out, you lose more calcium. If there's any stress. If you are doing any exercise in any way, meaning, even walking around the block to get to where I'm going. It depletes my calcium and then it's very hard to function.

Kate Pecora (32m 11s):
Before we started recording, I was talking and I think I pay maybe $35 a month for a single multivitamin. For me, I do budget that. That's something that I think about that I know I'm going to have to spend money on. It's never going to be covered by insurance. It's over-the-counter that is considered a dietary supplement, but for you, that is not the case. It is absolutely necessary. So when we talk about the costs of these supplements, these vitamins that are necessary for you, have there been any times where you've had to make decisions around, I can't do this, because I have to buy my vitamins or other things like that?

Kate Pecora (32m 57s):
Where there's really been a question if you're going to be able to afford these, without financial support, in the volume that you're taking?

Elise (33m 4s):
Not one month goes by that I don't have to think about that. At first they carried my calcium at Costco. It's like, oh, that's great, I can get that, but of course they have it sometimes and not the other. Even if I buy a bunch at once, you can't have it expire. My children believe that vitamins from the pharmacy, or the grocery store, are lower quality. When I tell them, and they see the amount that I take, they're like, Oh mom, you need to go to this company, because putting all that in your body is horrible, so you have to go to this company.

Elise (33m 44s):
I look at them and laugh, because I could barely afford it from the pharmacy. What they want me to do would be $800 a month, to take the purest form of the different vitamins. They're probably right, that that's what I should be taking, but I can't imagine anyone being able to afford something like that. With the calcium, and the calcitriol, I have extra in my car. I have extra at my kid's houses. I have extras at my closest friends, my husband's car, because even if I have my purse with me, you never know when you're going to need it. It's not like, oh, I need a cigarette, or I need a whatever something you say you need.

Elise (34m 29s):
This is a life-or-death kind of need. So it's very, very, very difficult, especially since I'm on disability. There's a certain amount of money that only comes in now, and when I subtract what it costs for prescriptions to pay for health insurance, the drug-portion of it, the vitamins and the prescriptions, there's nothing left. I mean, that's the extent of what my money goes to, and that's a horrible way to live.

Kate Pecora (34m 59s):
Thank you so much, Elise, for sharing your story. I think a lot of unique situations, that you've been able to describe really eloquently, that other people have to go through too. People don't talk enough about the cost of over-the-counter medications and how expensive it can be for people with chronic conditions. Thank you for sharing that, I appreciate it.

Elise (35m 31s):
My pleasure.

Dr. Bob Goldberg (35m 32s):
Thank you, Kate. Up next is this week's patient correspondent.

Kimberly (35m 35s):
I'm Kimberly. I have Raynaud's Scleroderma and APS. I'm from Georgia District Four. My governor is Henry C. Johnson Jr. Today, I'm talking about cost-of-living with a rare disease. SSI does not provide enough for me to live on my own, much less, cover the out-of-pocket costs living with my disease. I'm unable to find regular employment, because of my autoimmune diseases. This disability requires me to see my physician regularly. There needs to be an update to the rules of SSI, so people with chronic illness, and chronic disabilities like myself, don't stay trapped in a cycle of poverty.

Kimberly (36m 23s):
Along with having constant pain every day, constant fatigue is just unrealistic for me to work. Thank you so much for listening and my Instagram is @strong_self-love.

Dr. Bob Goldberg (36m 41s):
Is there a healthcare issue that you or someone you know is affected by? If so, we always welcome you to share your story with us. You can just send an email to Terry, and me, at podcast@patientsrising.org -podcast@patientsrising.org.

Terry Wilcox (36m 52s):
Thank you so much for listening to today's episode. We do love hearing from you. So let us know what you think of the podcast by leaving us a review and a rating on your favorite podcast app. This helps us reach more listeners.

Dr. Bob Goldberg (37m 7s):
If you want a reminder about new episodes that are coming up, and I'm sure you do, be sure to follow us on whatever platform you choose - Spotify, Apple Podcasts, or Amazon Music.

Terry Wilcox (37m 12s):
Join us here again next week for another new episode. Until then, on behalf of Dr. Bob and everyone at Patients Rising, I'm Terry Wilcox - Stay healthy.