June 10, 2022

The Future of Pharmacies

The Future of Pharmacies

No insurance? No problem. Blueberry Pharmacy in Pittsburgh is forging the path for a new kind of pharmacy. By cutting out the middlemen in the supply chain, Blueberry Pharmacy is able to provide its customers with inexpensive medications. It’s more...

No insurance? No problem. Blueberry Pharmacy in Pittsburgh is forging the path for a new kind of pharmacy. By cutting out the middlemen in the supply chain, Blueberry Pharmacy is able to provide its customers with inexpensive medications. It’s more transparent, and preserves the personal touch of an independent community pharmacy.

How’s it possible? Founder Kyle McCormick shares how his patients pay such low prices, and what the future of prescription drug access could look like with this model.

Plus, if you need to apply for SSI or SSDI, cancer legal expert Monica Bryant has you covered. She speaks with Terry about what all patients should know about these programs and how to access this insurance.

And speaking of disability insurance, hear from patient correspondent Lori Long. She discusses an SSDI policy currently in place that would cause her to lose her insurance if she gets married. 


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


Dr. Kyle McCormick, Founder and Pharmacist, Blueberry Pharmacy 

Monica Bryant, COO, Triage Cancer

Lori Long, Patient Correspondent 


AARP’s Billion Dollar Bounty

Understanding Insulin Prices

Blueberry Pharmacy 

Kyle McCormick’s Medium Article, “Imitation is the sincerest form of flattery”

How PBMs Raise Costs for Patients + Pharmacies

Can Mark Cuban Deliver Cheaper RX? 

Marriage, Ableism, and Social Security Disability - Patients Rising

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Kyle McCormick (6s):
Patients are being charged too much under the existing pricing model. Also, pharmacies aren't being appropriately compensated for the service they're providing under the current pricing model. Let's just set those two back in-line with each other and charge patients fair prices up-front.

Terry Wilcox (25s):
Today, a simpler and cheaper way to get the medication you need. We hear one pharmacist's mission to get patients their prescriptions at a fraction of the typical cost. He explains how, up next, right here on The Patient's Rising Podcast. I'm your host, Terry Wilcox, Executive Director of Patients Rising. We're an organization that advocates on behalf of the 133 million Americans living with chronic disease. Every Friday, we break-down the latest policy discussions that impact those with chronic illness. Today, I'm joined by my cohost fresh off his stint as the aroma therapist for Queen Elizabeth's Jubilee, Dr.

Terry Wilcox (1m 7s):
Bob Goldberg, Co-Founder of The Center for Medicine in the Public Interest. Oh, Bob, is there anything you don't do? I love it when I go back. It's the reason people are wondering if my laughs are generally, truly authentic, because you have changed the script.

Dr. Bob Goldberg (1m 23s):
Yes. I have, yeah. I'm evolving as a human being, and by the way, do we need an aromatherapist for the Patients Rising Fly-In, because I'm going to have some downtime.

Terry Wilcox (1m 34s):
I don't know. Are there access issues to aroma therapists?

Dr. Bob Goldberg (1m 38s):
Actually, it's easier to get in a room with a therapist under some health plans, than it is to get a low-cost generic drug for nothing or a new medicine. You know, the reason we have this show every week, and we'll talk about it in the show today, we're seeing grassroot changes. We're seeing some movement on benefit design that will shape, I think to the better, how we access and pay for care.

Terry Wilcox (2m 7s):
That's right, and while healthcare costs have been in the spotlight for some time, they're always in the spotlight, especially now with not only the general rising healthcare costs, but inflation on top of that. Now more than ever, patients need relief at the pharmacy counter, with their copays, whatever - patients need relief. That's the topic of today's show where we hear from Kyle McCormick. He's the Founder of Blueberry Pharmacy, in Pennsylvania. In 2020, he set-off with a mission to deliver low-cost generics to his community, by cutting-out the middleman in the supply chain. You know who we're talking about, folks, the pharmacy benefit managers. The PBMs, we talk about them all the time.

Dr. Bob Goldberg (2m 47s):
Right. We did a similar show on this when we discussed Mark Cuban's mail-order pharmacy. Now, as you'll hear in the interview, Mark Cuban is the CEO of the company, and reached out to Kyle to pick his brain. Really, we found Blueberry Pharmacy, when Kyle wrote about it in The Medium post. We're going to talk about what he did, and what he started a couple of years ago, is hopefully catching on across the country.

Terry Wilcox (3m 19s):
Kyle joins us up shortly to explain his pharmacy model, which provides low costs without the hassle and hidden fees of insurance, but first, here is this week's healthcare news headlines.

Robert Johnson (3m 33s):
In your Health News, hamsters are providing clues to the mystery of long COVID. A study shows that when compared to the flu virus, the Corona virus caused constant inflammation in the smell-sensing regions of the animal's brains. That's an important finding according to scientists on the project. The study appears in Science Translational Medicine. Babies born to mothers who had a positive PCR COVID test, are showing more neurodevelopmental issues, than those whose mothers did not catch the virus. The numbers, drawn from 2020 data are preliminary, but the rate of diagnosis doubled in babies where the mother tested positive. The study is in the JAMA Network Open.

Robert Johnson (4m 13s):
The Biden Administration says it has enough vaccine to protect everyone from monkeypox if the disease begins to spread, but the numbers of vaccine doses on-hand, disclosed in May, don't add up. The stockpile supposedly includes only about 100 million doses available. It's unclear how the Administration accounts for the extra 200 million that would be needed to offer everyone a shot. Finally, today, there's a study from Denver that says crime reports dropped when mental health teams responded to emergency calls without the police. The idea was tested for six months. It only worked when the reported crime was considered less serious.

Robert Johnson (4m 54s):
That's your Health News update for this week, I'm Robert Johnson.

Terry Wilcox (5m 4s):
Now Bob, before we hear from Kyle, of Blueberry Pharmacy, there are several stories, that caught our eye this week, that we wanted to dive into. First up is the Kaiser health news story, which you know what I'm talking about, as they put out an interesting piece on AARP. We've previously talked about how, in addition to travel and movie discounts, that they send to seniors in the mail, they also make a large portion, in fact I would argue the largest portion of their money, from selling Medigap plans to seniors. Not only are they profiting off of peddling insurance plans to seniors, they have also jumped into the primary care business, allowing them to use the AARP name to advertise their services.

Terry Wilcox (5m 50s):
This is a very interesting article, because on the one hand, we have been supportive of direct primary care, and the role primary care can play in transforming healthcare in this country. I do believe that. My issue, and I'll let you chime in here too, Bob, isn't that they're getting royalties for their logo. Everyone does that who has a big brand. American Cancer Society does that. American Lung Association does that. This is not a new thing, paying a fee to put a logo on something. However, when you're paying the fee to put a logo on something, and then you're also lobbying in the interest of where your logo has been put, right?

Terry Wilcox (6m 37s):
It doesn't become just a royalty fee then. That's a whole different relationship at that point. We've talked about how AARP actively lobbies and they do many other things where they lobby. Don't let the Nigerian scammers scam the scene. Yes, they do those very good things, and we're supportive of that, however, they also lobby on behalf of insurers. I mean, hands down, and we've talked about this before, when they didn't support rebate pass through. They actively supported things that are in the interest of insurance companies. We have always advocated for transparency in that there should be a disclosure.

Terry Wilcox (7m 20s):
We're not against anybody making money. We're obviously not against an organization. If Patients Rising had a powerful enough brand to do that, that would be a great way for us to make extra income. I don't think that is something that we're knocking. We're not knocking the fact that they're getting money for United Healthcare. It's that they're then taking positions that United Healthcare would want them to take. We don't think they're always necessarily in the best interest of the seniors.

Dr. Bob Goldberg (7m 47s):
Right, and you said it all, so there's not much I can add except to say that there are other organizations like the American Diabetes Association, and the American Heart Association, they have campaigns where you can get the American Heart Association's endorsement. Quaker Oats as heart-healthy, but you don't see the American Heart Association lobbying for oatmeal subsidies, or oat producer subsidies, or opposing tariffs, or something like that. What they make their money off of, in regards to branding, is separate apart from one of their key activities. AARP does not have that clear line.

Dr. Bob Goldberg (8m 28s):
Oak Street Health, is one of those innovations we talked about, earlier in the show, to improve access to care. I think the market does innovate and will provide those kinds of opportunities to provide better care, but AARP has been against things that support the bottom line of the companies they're getting royalties from and it's a problem. I'd like to give you credit, Terry. This Kaiser Health article did not happen in a vacuum. It happened in the wake of the fact that you wrote about it. You got beat-up a little bit by AARP, but now people are really taking a very close look at these kind of relationships.

Dr. Bob Goldberg (9m 16s):
I wouldn't be surprised to see if AARP comes up with a way to either tap dance around it or is pressured to make some changes in how they do things. The other thing, and this is the key issue, that AARP, when it comes to the supplemental plans and it comes to the United Healthcare Medicare Advantage plans, they are benefiting off of benefit designs that are detrimental to patients. That is the fundamental problem. On top of that, they are advocating policy positions that reinforce those discriminatory and detrimental benefit designs.

Terry Wilcox (9m 57s):
Right, and another topic we've been following closely is obviously drug pricing. We're always following that, because everyone is. Congress and the White House have their eyes set on insulin reform, which we've talked about many times on this program, with proposals of a $35 monthly price cap floating around. In theory we support this, but our good friend of Patients Rising, William Smith, posted a recent op-ed, that we'll link to in the show notes, that explores what has led to these high sticker prices for insulin in the first place. Unless you solve that problem, the monthly price-caps do not do anything to help folks who are uninsured. Look, you and I have talked about this many times on the show. This is one of the markets where rebate pass-through would be so helpful, because it's so out-of-whack.

Terry Wilcox (10m 43s):
The insulin market is, because the list prices go up and the net prices go down, which is what Bill talks about in his article. Even though you see the list price skyrocketing, the net prices go down every year. You have to solve that problem or you're leaving the uninsured totally out in the cold.

Dr. Bob Goldberg (11m 2s):
If there's enough spread to provide a $35 cap, you can do it for lots of other drugs, especially when we know the net-price of most drugs, across the board, are dropping. So again, it's not a bad thing. My health plan has a $35 copay on insulin, but that's something that should be across the board, especially for the people who are uninsured.

Terry Wilcox (11m 31s):
We've talked about this many times. The rebate kickbacks on insulin are so high, that no one in this country, no one, should be paying more than $35. We're not solving that problem with this. We're really kicking the can around and letting the status-quo stay in place. I think that's the point of his article. Speaking of high drug costs, let's get to the big story of this episode, where we hear about a potential solution to lower costs for patients at the pharmacy counter. As we talked about at the beginning, Kyle McCormick is the Founder of Blueberry Pharmacy, which dispenses low-cost prescriptions without the need of insurance or other middlemen, otherwise known as pharmacy benefit managers.

Terry Wilcox (12m 15s):
This week, he spoke with Bob, to share how he came-up with this model to save his patients money.

Kyle McCormick (12m 21s):
Getting out of pharmacy school, and into the real world, I was seeing year-after-year, reimbursement falling and all the signs pointing to patients having higher costs. The three big trends - Reimbursement falling every year. Insurance companies paying less to pharmacies. Patients having a higher upfront cost, so with higher deductible plans, they were already paying more. Then the third piece was, generic drugs are deflationary, so over the same years that patients pay more, and pharmacy being paid less, the actual cost of the drug is decreasing. I was thinking to myself, is there not a way that we could just charge fair prices to patients upfront if they're already seeing higher costs at the pharmacy window?

Kyle McCormick (13m 0s):
Why can't we just charge fair prices upfront? I got to thinking more about the service that we offer. As pharmacists, we often price things based on the drug and the product, and not based on the service. That's where I got to thinking, it's the same service as dispensing a drug whether it's 30 tablets or 90 tablets. Whether it's Amoxicillin or Tecfidera, so why don't we just charge the same cost plus for each medication and pass on whatever the actual ingredient cost is to the patient. That's where I came up with the Cost Plus model. To our knowledge, we were really the only ones doing it at the time.

Kyle McCormick (13m 41s):
We opened March 2020 and have kind of been planning it ever since early 2019. That's kind of how it came to be. It was patients are being charged too much under the existing pricing model. Also, pharmacies aren't being appropriately compensated for the service they're providing under the current pricing model, so let's just set those two back in-line with each other and charge patients fair prices up front.

Dr. Bob Goldberg (14m 11s):
Basically, what he's saying, is these things are so cheap. They're cheaper than paperclips. Why not just charge people exactly the cost to get it, and instead of getting your prescribing fee off of the percentage of the drug, charge a straight service fee that reflects the care and service you're going to get directly from the pharmacist. I think most people understand that you're not getting the lowest price possible on your generic drugs, nine times out of ten. I'm not. I'm paying $35 a month for a generic drug that is probably pennies on the dollar.

Terry Wilcox (14m 46s):
Oh, absolutely. It definitely depends on your plan, but this is one of the things that we've talked with Dr. Popovian about. He has always said that the patient should only be paying at the pharmacy counter, what the pharmacist is getting reimbursed, or something like that. That's the exact amount they should be paying. Nothing more than that.

Dr. Bob Goldberg (15m 7s):
He calls it an "uninsurable product". I mean, how can you insure something that costs 79 cents for thirty doses?

Terry Wilcox (15m 15s):
It's almost like when a drug gets to be generic, it should be kicked-out to not needing to have insurance to pay for it. I guess there will be separate issues with folks on Medicaid, or who have special circumstances, but for the most part, most of us can walk-up to the pharmacy counter and pay. Even with the insurance, my husband has a couple of generic drugs, and it's like this week it's $5.83 and one time it was less than a dollar. I think they may have negotiated, as per what I just said, that this is a large entity that insures him, so therefore, they have these great rates. If you're talking about those amounts of money, why do you need insurance for that?

Terry Wilcox (16m 1s):
I don't know that you do.

Dr. Bob Goldberg (16m 2s):
You don't!

Terry Wilcox (16m 3s):
Let's focus on the things that we really can't afford.

Dr. Bob Goldberg (16m 8s):
Exactly, exactly. One of the things that we talked about is some of the over-the-counter stuff, which is generic, costs more than the generic drug under prescriptions. I think he's really onto something. It's something, as I pointed out, took a guy like Mark Cuban, to fundamentally understand this is something that could be done on a national level. We'll talk a little bit about the fundamental differences between what the Mark Cuban low-cost pharmacy does, and Blueberry, but the impetus is the same. It's really the change in the way in which the supply chain is set-up.

Dr. Bob Goldberg (16m 52s):
Here's Kyle to explain why just changing the supply chain, making it from the manufacturer to the pharmacist, to the patient, and making this simpler, can save everyone money.

Kyle McCormick (17m 5s):
The average 30-count supply of everything on our shelves at the pharmacy, our acquisition cost is $3.79 cents for thirty tablets, capsules, or whatever it is. That's less than a cup of coffee. That's a month supply of a medication. A life-saving medication for patients. Generics make up ninety-plus percent of medications dispensed, from a volume perspective, not necessarily a cost perspective. So, if the average 30-count, one month supply of something costs less than a cup of coffee, the question we have to ask ourselves, is why even buy insurance for it? We don't buy insurance for those items, but we expect insurance to cover them.

Kyle McCormick (17m 46s):
In reality, they're fundamentally non-insurable. They are insurance we have for high-cost, unknown events, and they don't meet the criteria for high-costs, and they don't meet the criteria for unknown, because most of them are chronic medications that patients will have to take for the rest of their lives. So really, we shouldn't want insurance to be involved in that transaction, because the insurance company has to take-in an administrative fee in order to cover it. It allowed us to re-think the whole pricing model. We have more predictable numbers to work with. We know how many prescriptions we can fill an hour. We know how much overhead it's going to be. From that, let's work backwards and see how much we need to make every prescription, in order to still have some room for profit too, versus the traditional model where you can't set the costs.

Kyle McCormick (18m 31s):
You can't say how much it will be reimbursed, because that's determined by the PBM. You also don't have much flexibility to change your acquisition costs either, so you're at the mercy of either hoping for better reimbursement, or just increasing volume all around in order to make-up for any falling.

Terry Wilcox (18m 50s):
It makes total sense. These are the things we've been talking about. Was insurance really created to cover these very affordable things?

Dr. Bob Goldberg (19m 3s):
The other thing that occurred to me, a lot of reimbursement to providers, is a percentage of the cost of the drug. In Medicare Part B, it's average selling price, plus 4% or 6%. It's a fundamentally weird way of paying for people, and it incentivizes the supply chain, where you boost the list price so that everybody benefits. The whole supply chain is now organized around that scam.

Terry Wilcox (19m 33s):
So, how has his growth been and what is the reaction? You and I both know, patients think if they've got insurance, that should cover everything.

Dr. Bob Goldberg (19m 42s):
Funny you asked that question, Terry, because I wanted to know what the product looks like for patients. What it costs, what the service is, and here's what Kyle had to say.

Kyle McCormick (19m 52s):
With that in mind, we set all of our dispensing at the same price. It's Cost Plus $10 for non-members, but also patients can be members at our pharmacy paying an annual, or quarterly fee, and that reduces that Cost Plus $10 to just Cost Plus $3. The philosophy behind that is, if you have a patient that's a little more complex, disease states, maybe has five or six medications, that means every month they'd be paying $50-60 in dispensing fees, but that doesn't mean it actually takes that much more time for us to do the service of dispensing. We're looking at drug interactions across all the medications, so really the only added time, is coming out of each individual product.

Kyle McCormick (20m 38s):
It didn't really justify charging $10 per item if somebody is getting five or six items. So, by pledging loyalty to say, You're my pharmacy. We're going to pay you this medication management fee, in the form of a membership every month, regardless of whether or not we're getting anything filled. That's why we came up with $3 pricing.

Dr. Bob Goldberg (20m 58s):
If it sounds familiar, there's a reason why. The CEO of Cuban's company, reached out to Kyle to discuss how he did it, and here's what took place.

Kyle McCormick (21m 9s):
We had a long conversation. I shared our model, and shared how we price medications from a pharmacy, not from a manufacturing standpoint, and didn't think anything of it. I was like, if anything, this is a great synergy. We have a manufacturer that's now going to be pricing their drugs transparently. Manufacturing in the US. Seems like a great partnership between a pharmacy, that prices drugs transparently, located in the US, so it's pretty open. No NDAs or anything like that. Then fast-forward to this January, whenever Mark Cuban Cost-Plus Pharmacy opens, and I can't help but think that maybe some things were learned during that conversation, but we're very transparent, a very transparent model.

Kyle McCormick (21m 51s):
If anything, I've come to realize, that our mission is to accelerate the transition to fair and transparent pricing model in pharmacy. If anything, it's good.

Terry Wilcox (22m 1s):
He's basically saying, Yeah, I had a call with Mark Cuban. Mark Cuban's folks learned a lot from me.

Dr. Bob Goldberg (22m 8s):
I put him in business.

Terry Wilcox (22m 11s):
I understand his point. He's not out to bellyache about that.

Dr. Bob Goldberg (22m 15s):
No, not at all. Just the opposite.

Terry Wilcox (22m 16s):
As much as he sees the acceleration of this model and transparency in health care, which is one of our key words. I had a conversation, before I got on the podcast today, just about every conversation I have now, has to do with making healthcare more transparent. It's very opaque, and when things are opaque, they're confusing. When things are confusing, it's very easy to profiteer off of the confusion. I just think that the more transparent we can make it, the better it is for everyone.

Dr. Bob Goldberg (22m 52s):
Yes, and that's one of the key differences between what Mark Cuban is doing, it's a mail-order pharmacy.

Terry Wilcox (22m 59s):
Yeah, Mark Cuban's company is an online pharmacy, correct? It's only online, whereas, Blueberry is an independent community pharmacy.

Dr. Bob Goldberg (23m 7s):

Terry Wilcox (23m 7s):
I think the in-person connection is really critical in the healthcare space. I think we all need a community pharmacist, quite frankly, especially patients with chronic diseases who need regular medications and routine care. We all know medicine is personal, and having those neighborhood pharmacies, and those neighborhood doctors, that's why we are big advocates for direct primary care, that connect with their patients. They can really make a big difference in healthcare.

Dr. Bob Goldberg (23m 37s):
To the extent you need direct primary care, you need direct support on managing your medication and the totality of your condition. That's where a community pharmacist, and again, not just neighborhood pharmacies, but sometimes your pharmacist at Walgreens, or CVS, can provide those services as well. It's the community pharmacies where that kind of extra special care is provided, and what Kyle has said is, we're not charging you for the product. We're just giving it to you at cost. We're charging you for the service and for the ability to reach out. In fact, instead of emailing Kyle, I just called. I didn't know if it was a corporate office.

Dr. Bob Goldberg (24m 21s):
It was the pharmacy. The first ring, it was Kyle himself, who picked up the phone. That was really refreshing, because if you've called your pharmacy lately, and if you're a provider...

Terry Wilcox (24m 35s):
It's another thicket of nonsense. Calling anywhere is a thicket of nonsense, quite frankly, but calling your pharmacy is just, "Press one." It's just crazy, I agree. That is refreshing when somebody answers the phone, in general, it is refreshing.

Dr. Bob Goldberg (24m 55s):
Exactly right. My experience with him was another example of the kind of patient connection that he tries, and can now focus on, because of his business model. So, here's Kyle talking about that.

Kyle McCormick (25m 6s):
I'll give you an example of a patient encounter. You described your call here, "As you know, I got to talk to the pharmacist right away." We try to answer within one ring. The other Cost Plus pharmacy, the patient recently transferred from said, "I called, waited on hold for a little bit and then somebody answered and said, "It's too busy right now, please call back later." It's the idea of being that community pharmacists. Communities need pharmacies. If COVID taught us anything, we can't rely on mail-order for our lifesaving medication. We have to have pharmacies in communities, so that if mailing network goes down, that's fine.

Kyle McCormick (25m 47s):
If natural disaster, there's at least some medication in the community to sustain. So, to suggest that mail-order solves all problems, it's not real.

Terry Wilcox (25m 56s):
I love this. I love this kind of innovation, health care delivery. We need a lot more of it, because we need to be keeping our eye on the prize of making sure that all patients have access. I think this is a great way to relieve some of that pressure from having it all under insurance. For more on this story, and all the others we've discussed today, head to the episode 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.

Terry Wilcox (26m 44s):
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. To learn more, visit Patientsrisingconcierge.org or email us at askusanything@patientsrising.org.

4 (27m 21s):
Field Correspondent, Kate Pecora, is out this week. So today, we are joined by cancer, legal expert, Monica Bryant, who's the Chief Operating Officer of Triage Cancer.

Terry Wilcox (27m 31s):
We always love having Monica on, and I always learn something new myself, each time I chat with her. For this week, we spoke about a big topic for members of our community. How to access disability insurance. Here's our conversation. Thank you, Monica, for joining us today. It's so great to have you here again. Today we're going to talk about disability insurance. Going out on disability, as you and I have discussed what that means, can we start off the conversation today with defining what that means when somebody says, "I'm going out on disability"?

Terry Wilcox (28m 12s):
What insurance are they talking about? Is it public, private, or is it both? What's the landscape of that?

Monica Bryant (28m 21s):
To your point, we often hear people using a statement, something to the effect of, "I'm out on disability" or "I'm going out on disability" and there's often some confusion about what that actually means. Typically, what people mean by that is they are taking time-off from work, either for a short period of time, or potentially a longer amount of time. The disability piece is really about replacing a percentage of the income that they're losing, because they can no longer work due to their medical condition or their disability.

Monica Bryant (29m 1s):
There are actually a couple of different sources of disability insurance. There are private policies. Many times, employers will provide these policies as an employee benefit. There are a handful of states that have state disability insurance programs, like California and New York, for example. Then there are two federal programs that are both long-term disability programs run by the Social Security Administration.

Terry Wilcox (29m 24s):
So, you're diagnosed with this life-changing event, whatever it may be. State first? Obviously, the first thing you do is you have a private policy. That's probably the first place you go.

Monica Bryant (29m 39s):
Right, and let's talk about a perfect world. Best case scenario would be that someone would have a private short-term disability insurance policy, because those are typically the easiest to kickstart quickly. If somebody is, let's say, out for surgery, and they have job protected FMLA leave, that is unpaid. The short-term private policy can kick-in and pay them while they're not working. Then maybe something happens where they can't go back to work. Then, that short-term private policy, if they have it, kind of converts into long-term and keeps going.

Monica Bryant (30m 27s):
Most long-term insurance companies, private insurance companies, will require that somebody apply for SSDI. If they're accepted, and they're eligible for SSDI, then SSDI will pay them their amount and then long-term private policy will prorate their amount. For example, the private policy is going to pay someone 75% of their salary. SSDI comes in and is going to pay them 50% of their salary. Moving forward, SSDI pays the 50% and the private pays 25%. If someone lives in one of those states with state disability, they might not have private short-term and that's where the state disability steps in, but we're only talking about California, Hawaii, New Jersey, New York, Puerto Rico, and Rhode Island.

Terry Wilcox (31m 17s):
Oh wow, it is a small number.

Monica Bryant (31m 23s):
It is a small number of people that have access to that state disability insurance.

Terry Wilcox (31m 34s):
What are the differences between these two federal programs that take the brunt of this disability insurance bucket?

Monica Bryant (31m 44s):
SSI is supplemental security income. SSDI is social security disability insurance, and both SSI and SSDI, are run by the SSA, which is the Social Security Administration. It is definitely a mouthful for many people, but the main difference between these two programs is about eligibility. With SSI, it is about having a low-income and low asset level. Assets can be things like savings accounts or retirement accounts, or even a life insurance policy that has a cash value.

Monica Bryant (32m 24s):
Those are all going to be things that are considered assets. Lower income and lower asset level is potentially eligible for SSI. SSDI however, is about having worked, and paid into the system over those working years. It's not about your asset level or your income level, but really about work history. Both programs require that somebody has a disability so severe that they cannot work. They cannot do their job. They cannot adjust to a new job and that that disability is expected to last for a year, or longer, or result in death.

Monica Bryant (33m 6s):
We are talking about a very high standard of disability to access either one of these programs.

Terry Wilcox (33m 13s):
When we look at social security income and social security disability insurance, or SSDI, of those two, do you qualify for one or the other? Can you be low-income and also have worked and paid?

Monica Bryant (33m 33s):
Yes, it is possible to be eligible for both programs. It is also possible that someone might qualify first for SSI and then potentially SSDI and here is how this happens. SSDI comes with a five-month waiting period. Once you've applied for SSDI, the Social Security Administration will give them what's called, a disability onset date. It's the date that the Social Security Administration determines you become eligible for this program. From that disability onset date, there is a five-month waiting period before you start receiving benefits.

Monica Bryant (34m 17s):
That's five months when you aren't getting any money and you cannot work. For individuals who have a low-income, and low asset level, SSI can actually step-in and cover them for that five-month waiting period. Depending on how much they get from their SSDI, once the SSDI payments kick in, it might be at a level that it now makes them ineligible for SSI. Then, the SSI stops and SSDI starts, or for some people, it could be that they continue to collect both.

Terry Wilcox (34m 47s):
One of the other things, we should really touch on, is what a state disability looks like. How does that work with federal, if you are in a state that has state disability? Let's go there next. If you live in a state, like you and I discussed, and not all states have state disability, but for those that do, what does that look like and how does that work with the federal programs, or does it? Is it totally independent?

Monica Bryant (35m 18s):
It is independent in the sense that it is run by the state. The state disability insurance programs tend to be short-term programs, so there's going to be x-number of weeks that you can collect benefits. Whereas with the federal programs, once you are eligible, if you continue to have the disability that is keeping you from working, you can collect benefits until retirement age. We talked about the idea that potentially, SSI can help fill that five-month waiting period, before SSDI kicks in.

Monica Bryant (35m 60s):
Similarly, if someone lives in a state with state disability insurance, that state disability insurance can help bridge the five-month gap before SSDI kicks in. Practically speaking, what really happens for a lot of people is, they are dealing with their diagnosis. They are struggling to work, so they stop working and they start with state disability insurance, because they think after x-amount of time, I'll be able to go back to work. As time goes on, they realize that might not be realistic, so they end-up applying for SSI or SSDI.

Terry Wilcox (36m 33s):
Is this the type of thing that somebody can work with you guys on? Say you get diagnosed, and you're just like, the web of the navigation. What am I supposed to do next? Is there a place to call, or a website to look-up and engage with, that can really help people with the navigation of this web?

Monica Bryant (36m 58s):
I would certainly encourage people to reach out to Triage Cancer's legal and financial navigation program. You can do that by going to triagecancer.org/gethelp and then set up a phone call with us. If I'm being perfectly honest, I would love for people to contact us, very close to diagnosis, to figure-out what their best next steps are, because at that point, we can take a look at what they have available to them. Whether that's through their employer, based on where they live, or based on their income. Sometimes it's based on the type of diagnosis they have, and then give them, Step One is this. Step Two is this. Step Three is this, so they can get those ducks in a row.

Terry Wilcox (37m 45s):
How can you best prepare when you feel completely healthy?

Monica Bryant (37m 49s):
I would say, because I know you have a huge audience, if you don't have a pre-existing condition, step number one is to figure-out where you could potentially purchase disability insurance. That could be through an employer. The next open enrollment period through your employer, check out what's available to you. You could also potentially go straight to an insurance company like a Mass Mutual, for example, would be a company that might have a disability insurance policy you could purchase on your own. If you belong to an association, like your alumni association, sometimes they will have group benefits that you can access. I would say that would be step one.

Monica Bryant (38m 32s):
Even if you had a diagnosis, you could potentially still do all of those things, but recognize that the pre-existing condition protections we now have in health insurance, don't carry over to disability insurance. You may find yourself in a situation where you actually have to do a little bit more shopping to find a policy that you can purchase. I also think everyone should look-up their, my Social Security Account. There is now a portal, through the Social Security Administration, where you can check on your earnings to make sure that everything you've earned over your working history, has been reported to the Social Security Administration.

Monica Bryant (39m 16s):
You can actually see through this, my Social Security Account, if you are vested in SSDI. You'll see a bar across the top, and if it's all green, it means you have enough work history to get SSDI, should you need it. I think just knowing what someone has access to is very helpful. I also think if you live in one of those states that I mentioned, double-check with your employer that you would, in-fact, be eligible for those programs if something were to happen, because that way, you know all of your potential puzzle pieces that you have in your back-pocket, should you need them.

Terry Wilcox (39m 55s):
Well, thank you so much, Monica, for joining us today. It's always a pleasure to have you on.

Monica Bryant (40m 1s):
It's always a pleasure to be here. Thank you so much.

Dr. Bob Goldberg (40m 7s):
Thanks, Monica, and next up, is patient correspondent, Lori Long. She discusses a marriage penalty, and social security policy, that prevents her from keeping her disability, if in fact, she does get married. Here's Lori.

Lori Long (40m 24s):
When the man I love asked me to marry him, I said, "Yes", unaware that the US government allows the Social Security Administration to discriminate against people with disabilities, by restricting whom we can marry. They do. Mark, and I, cannot enjoy our love within the sanctity of marriage, because of current policy. Marriage discrimination against couples like us, interabled couples, has been enforced with a prohibitive policy that mandates childhood disability survivors forfeit social security disability insurance, including life-saving health care, upon marriage to someone not also disabled on social security.

Lori Long (41m 7s):
This rule does not apply to someone disabled as an adult, thus on their own record. Lack of decent and up-to-date governing of the SSA's policies has led to people, disabled as children, or with developmental disabilities, to being treated differently, and unequally, compared to those with acquired disabilities later in life. I believe this is not consistent with the US Constitution's Equal Protection Laws, nor does it align with the idea that Life, Liberty and the Pursuit of Happiness belongs to everyone. Twenty-seven years ago, former Senator John Breaux, introduced a bill to end the marriage penalty for disabled adult child, DAC recipients.

Lori Long (41m 51s):
I'm asking the United States to not wait another twenty-seven years to do the right thing. Chief Justice, Earl Warren, said in the 1967 case, Loving v. Virginia, "The freedom to marry has long been recognized as one of the vital personal rights, essential to the orderly pursuit of happiness by free men. Marriage is one of the basic Civil Rights of man."

Dr. Bob Goldberg (42m 20s):
Thank you, Lori. Now, folks, if you find yourself facing a health policy issue like the one Lori described, or anything else, we want to hear about it. You can share your story right here on the podcast by becoming our next patient correspondent. It is painless, it's easy, and it's free. To get started, just send an email to Terry and me at podcast@patientsrising.org.

Terry Wilcox (42m 45s):
Thank you for joining us for today's episode. Next week's episode will be a huge change of pace. Our Patients Rising community will be in Washington DC, this coming Tuesday and Wednesday, as part of our Patients Rising Now, "We the Patients" Fly-In. We'll be on Capitol Hill advocating for policies that improve healthcare access and affordability for all patients.

Dr. Bob Goldberg (43m 6s):
That means we won't have our normal episode for you next Friday. Are any of our episodes normal, Terry? The ones that I'm not on, I guess are normal, but in any event, you'll be able to hear from many of the attendees who are flying in from all across the country. They'll share their healthcare stories and why they've come to DC to fight for the rights of the chronic disease community.

Terry Wilcox (43m 25s):
We've been speaking with our members, leading up to this event, and they have truly incredible experiences and stories. We're so looking forward to connecting with them next week. So, until then, for Dr. Bob and everyone at Patients Rising, I'm Terry Wilcox - Stay healthy!