May 13, 2022

Have Health Plans Abandoned Rare Disease Patients?

Have Health Plans Abandoned Rare Disease Patients?

“Your medication is no longer covered” are the words no patient wants to hear. Yet this is a common occurrence for patients with rare diseases who are on private health insurance plans. In an effort for plans to save money, they’re dropping...

“Your medication is no longer covered” are the words no patient wants to hear. Yet this is a common occurrence for patients with rare diseases who are on private health insurance plans. In an effort for plans to save money, they’re dropping coverage for rare disease treatments and sending patients to patient assistance funds. 

But once those funds are maxed out, it can leave patients on the hook for enormous copays. Guest Randi Clites of the Little Hercules Foundation shares how her son’s hemophilia treatment was dropped unexpectedly from their plan. Now, she’s on the hook for a $21,000 bill.

Kelly Maynard, Founder and President of the Little Hercules Foundation, also joins the show to share how private plans are able to get away with this, and policy solutions that can close the loophole and protect patient coverage for rare disease treatments. 

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


Kelly Maynard, President of the Little Hercules Foundation

Randi Clites, Rare Disease Policy Director of the Little Hercules Foundation

Angela Deeds, Patient Advocate 


Trends of Prescription Drug Manufacturer Rebates in Commercial Health Insurance Plans, 2015-2019

Hospitals Look to Raise Treatment Costs as Nurses' Salaries Increase - WSJ

Little Hercules Foundation

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Kelly Maynard (6s):
We've also heard that certain treatments are just lasered-out of these health plans and just completely leaves these patients, or their dependents, without any kind of coverage for a diagnosis or a treatment that that patient needs.

Randi Clites (23s):
Those of us who live in the space, we're always waiting for the letter that we get in the mail that says our child no longer has the care that they need access to. That's always in the back of our minds.

Terry Wilcox (36s):
Starting January 1st, your treatment is no longer covered. It's the dreaded letter that patients hope will never arrive in their mailbox. For those with rare diseases, employer-sponsored health plans have steadily dropped coverage for rare, and often expensive, drugs and treatments. How can we protect patients who are thrown to the curb by their health plans? That's up next. Welcome to The Patients Rising Podcast. I'm Terry Wilcox, Executive Director of Patients Rising. We're a group that advocates on behalf of the one-hundred and thirty-three million Americans who live with a chronic illness. I'm here with my cohost, who was tossed out of the Kentucky Derby for fighting.

Terry Wilcox (1m 17s):
You changed that since, "For biting an usher!"

Dr. Bob Goldberg (1m 23s):
That's right.

Terry Wilcox (1m 24s):
He's Dr. Bob Goldberg, Co-Founder of The Center for Medicine in the Public Interest. You bit an usher?

Dr. Bob Goldberg (1m 30s):
Well, you know, I got so carried away when Rich Strike bit the guide pony. I just got carried away. You know, it was a historic victory and thankfully it wasn't too much of a bite. It was like a little...

Terry Wilcox (1m 47s):
Like a little nip?

Dr. Bob Goldberg (1m 48s):
There was a pretzel in his hand, so I was aiming for that and I missed.

Terry Wilcox (1m 53s):
They do have big teeth, you know. Whenever you feed a horse, you always have to have a flat hand if you give them a treat.

Dr. Bob Goldberg (1m 59s):
That's right.

Terry Wilcox (1m 59s):
We used to feed them on my grandma's farm. We used to give them vanilla wafers. She would always carry vanilla. That's how we would catch them in the field and then bring them out so I could ride them. Anyway, I digress.

Dr. Bob Goldberg (2m 9s):
Well, no, but that's like the next time we get together, make sure you have a lot of vanilla wafers.

Terry Wilcox (2m 16s):
I will. I'll make sure. I'll keep my hand flat for you, Bob.

Dr. Bob Goldberg (2m 20s):
Thank you. Thank you. Beside that, as we do every week, we're unpacking the latest in health care policy news from Washington DC, and we're doing it with a laser focus on legislation that impacts access affordability and healthcare transparency for those living with those chronic conditions.

Terry Wilcox (2m 41s):
Well, today's episode focuses on the access challenges facing those with rare diseases, specifically for patients on employer-sponsored health plans. In fact, many rare disease patients have seen the drugs and treatments they've come to rely on eliminated from their plans completely. In an attempt to save money, these plans have instead, directed these employees to patient assistance funds, but this is an unsustainable solution and can lead to higher costs for patients.

Dr. Bob Goldberg (3m 9s):
It's not just unsustainable, it's unethical. We hear from one of these stories today, Randi Clites of the Little Hercules Foundation, recently received a letter from her health plan that said her son's hemophilia treatment would no longer be covered. She tells us how that unfolded and the shocking costs that they're now on the hook for. Her colleague, Kelly Maynard, also joins us to explain why these carve-outs are happening and what can be done to protect the health care of rare disease patients.

Terry Wilcox (3m 44s):
That conversation is going to be up shortly, but first, this week's Healthcare News headlines.

Robert Johnson (3m 52s):
In your Health News, the US passed the one-million mark for COVID-19 deaths this week. A grim milestone in the third calendar year of the pandemic. It comes on the heels of an Administration projection, that the country will see another 100 million COVID infections this Fall. The Administration wants Congress to provide more money to pay for vaccines and other pandemic tools. Another sobering stat this week, overdose deaths in the US, continue to climb. Last year, they were up 15% over the previous record set in 2020. The number equals about one death every five minutes. In real numbers, that's more than 107,000 lives lost.

Robert Johnson (4m 33s):
At the same time, a new study in The Journal of the American Medical Association Open Network, says medicines that lower opioid overdose risk are underused. The study says fewer than half of those, with opioid use disorder, were given medications as part of their treatment. Finally, there's concern that if the public health emergency, declared in response to the pandemic comes to an end later this year, as many as 14 million low-income people could lose their Medicaid coverage. The estimate comes in a new report from the Kaiser Family Foundation. That's your Health News update for this week, I'm Robert Johnson.

Terry Wilcox (5m 19s):
The first piece of news on the list today is rebates, which apparently Bob, we found that the higher and higher the rebate kickback is, doesn't necessarily mean lower cost to patients. Oh shock!

Dr. Bob Goldberg (5m 37s):
No! Really?

Terry Wilcox (5m 38s):
I'm shocked! Aren't you shocked?

Dr. Bob Goldberg (5m 40s):
Wha, wha, what?

Terry Wilcox (5m 41s):
Just shocked. I actually have to go over to our mutual buddy over on Twitter, Popovian, because you and I love to talk about transparency and I think he just put up some new, I don't know if it's new, it's pretty new, because it's manufacturer data from 2021. So, average list-price change, 4.9% increase. The average net-price change, negative 1.2. It's gone down, even though their list-price went up 4.9%.

Dr. Bob Goldberg (6m 22s):

Terry Wilcox (6m 22s):
The gross-to-net difference, negative 6.1 for stent, and the average reduction from list-price negative 61%. So, that's the rebate, right? I mean, the rebates are rampant and another thing that's really interesting, and I think this does play into it, and I'm realizing this more and more, because I'm learning more about this, Bob. Do you know The Wall Street Journal makes the case that hospitals are now crying poverty and they're going to raise their prices by 15% to offset nurses' salaries. Are they kidding me?

Dr. Bob Goldberg (6m 59s):
That's ridiculous.

Terry Wilcox (6m 60s):
This is a Wall Street Journal article. I'm like, are you serious? Like you get ridiculous amounts of 340. I just can't even put - hospitals amaze me.

Dr. Bob Goldberg (7m 13s):
We should talk about it the next show. A 340B, the nonprofit hospitals are making, I forget what the statistic was, but the amount of charity, because the nonprofit hospitals are getting, is declining and 340B is increasing.

Terry Wilcox (7m 28s):
Oh, I know, it's ridiculous. The for-profit hospitals are giving more charity care than the nonprofit hospitals.

Dr. Bob Goldberg (7m 35s):

Terry Wilcox (7m 35s):
Finally, I have to say, Bob, industry is throwing up their hands and saying enough is enough. I mean, many of them are marching out, or really clarifying, where they're going to be giving 340B pricing and it's not just wherever anyone tells them to change.

Dr. Bob Goldberg (7m 53s):
Exactly, yeah. You might be able to answer this better. They're not doing the satellite pharmacies. They're only doing the ones in the hospital or something like that, but industry is basically saying, we're not going to let all of these covered entities and all of these locations get this price, even though they may all be owned by you, or whatever. Yeah, it's just another way of playing with other people's money. That's really what it is.

Terry Wilcox (8m 21s):
Well, it is and the other thing they're doing, and this will play into some of what we're talking about today, is J & J is suing Saveon RX for copay assistance manipulation. It's so interesting, because J & J is making the claim that our copay assistance - we've had to dole-out a hundred-million dollars more in copay assistance, because basically, they're doing what we're going to talk about here in just a minute. We're throwing people on the patient assistance program. To set this up, I want to talk a little bit about Health Plan Heroes and some of the independent designers we work with there, and the small business employers.

Terry Wilcox (9m 6s):
This is one of the reasons why the work we're doing with Health Plan Heroes is so extraordinarily important. This chain between what are small, but ethical employers, trying to do the right thing. There are many ways and that's why we're trying to find these types of dialogues, but what is going to be described here today, is completely blindsiding people. This is not ethical.

Dr. Bob Goldberg (9m 37s):
I just don't get it. It's just not what a humane society should be doing.

Terry Wilcox (9m 43s):
This is not ethical brokers. If they're benefit designers, these are not ethical benefit designers. This isn't how you treat patients. I spoke this week with Kelly Maynard, the Founder and President of The Little Hercules Foundation, and Randi Clites, the Rare Disease Policy Director. They've been hearing from patients who have their rare disease care scratched-off their employer-sponsored health plans, and have even experienced it themselves. The gut-reaction to these stories is, how is this allowed to happen? How can an insurance plan just, out-of-the-blue, drop the dire care that a patient needs. To give us some background, here's Kelly on how self-funded employer plans, otherwise known as ERISA plans, which we've talked about quite a bit on this show, have decided to drop this kind of care.

Kelly Maynard (10m 32s):
They're called ERISA plans. They're governed by the Department of Labor. They are not regulated by the states. Basically, these employers, will hire a health plan as a third-party administrator to administer their health plan for their employees, but that employer covers all of the costs, right? So, there's some worries about discrimination in there. The employers are not allowed to discriminate against an employee if they're a high-cost, health-expenses type of employee. We do know that employers are allowed to get the cost associated with a diagnosis or a specific treatment.

Kelly Maynard (11m 14s):
That has led to some employees of these ERISA-funded, they're called self-insured employer plans versus fully-insured, where the health plan takes on the risk for the employer. That's an important distinction. We have heard from employees in the Duchenne Community, and in the Rare Community, that they've been asked to leave their employment, or they've been a stellar employee and all of a sudden there's a diagnosis associated with high healthcare cost, and they're being let go. We've heard it many, many times, and we've also heard that certain treatments are just lasered-out of these health plans and completely leaves these patients, or their dependents, without any kind of coverage for a diagnosis or a treatment that patient needs.

Terry Wilcox (12m 8s):
That's insane.

Dr. Bob Goldberg (12m 9s):
How is it legal?

Terry Wilcox (12m 10s):
I think we're going to talk a little bit about that, because one of the things that is so important in all of this, is a lot of these employers, and fully disclosing here, none of the small business employers we work with had anyone who was on hemophilia medication, or had a really ultra rare disease with expensive medications. We weren't able to identify that story within the patients that we talked to. One of the things that was really the whole crux of designing a plan for employers, was pro-employee and pro-employer, in trying to cut costs and create transparency, wherever possible, was making sure that everything was going to be covered.

Terry Wilcox (13m 1s):
If there was a doctor they were already seeing, there was no need to change that. They had a plan in place for continuing whatever plan they chose, and through all these mechanisms, this seems really seedy and secretive and really...

Dr. Bob Goldberg (13m 30s):
Yeah, I mean, it's not right.

Terry Wilcox (13m 31s):
What Kelly described, has happened to many families, including Randi. Her son lives with hemophilia and she received the dreaded letter in the mail that the drug he needed, would no longer be covered by the plan. So here, take a listen to her story.

Randi Clites (13m 48s):
When an ERISA plan takes on the full cost of medical coverage, there's a vendor that comes in and it's a stop-loss carrier. They will cover any risk over a certain amount and that amount can vary based off of the coverage that employer would like. The stop-loss carrier started seeing that it's legal to carve-out certain medications, or certain disease groups, and that was really our first hint at who was driving this carve-out. That was about three-years-ago, and then two-years-ago, we started hearing about these new brokers, or vendors, coming into the market who were designing benefits, telling employer-sponsored plans that we can cover your risk on these certain drugs.

Randi Clites (14m 44s):
We will make sure that the patient gets access to any copay assistance that's available to them and make sure that we utilize all of that alternative funding that is available to the patient before you have to pay out your medical dollars. So, that trend started and that's where it got really difficult real quick. This took it to a new level and unfortunately, or fortunately, it happened to my plan, and I knew I was waiting for the shoe-to-drop. That's the thing, those of us who live in that space, were always waiting for the letter we get in the mail that says our child no longer has the care that they need access to.

Randi Clites (15m 32s):
That's always in the back of our mind. I got our benefit designs. I read through the whole booklet that they send us and I found this paragraph in our plan. It started talking about a specialty prescription drug co-pay offset program. My bells-and-whistles went off. I was like, this is going to happen to us. I cannot believe, after all these years of advocating for other families, it's going to happen to us too. I started making phone calls to my specialty pharmacy, and to the provider of insurance, who is just an administrator. They administer the plan design for my employer, so I started making phone calls and wanted to know what drugs are in this co-pay offset program, because my plan design specifically says if I'm getting a prescription drug, that's in specialty pharmacy benefits, which I know my son's medication usually is, I should have a $75 a month copay.

Randi Clites (16m 33s):
Then there's this little caveat that says, "Or any maximum available manufacturer funded co-pay assistance." I started thinking about it and I'm like, oh my goodness, my copay isn't the same as all my peers that are in the same plan design. My copay is going to be whatever the drug manufacturer's assistance pays for, which is based off of my income. My son's medication, although it's already been set at a certain copay, which is much more than the co-pay all my other drug benefits are, because I have a really rich plan and I'm really lucky that way. Most of our copays are $15 or $25, but this drug is set at $75, but they're saying they're going to get assistance from the manufacturer.

Randi Clites (17m 23s):
I didn't feel that was right. The drug is already made at formulary level at a certain amount. The drug copay has already been set at $75 for everything else, in this special tier, but now they're going to look at my income, decide what the drug manufacturer's co-pay assistance will allow for us to qualify for, then they're going to max that out.

Terry Wilcox (17m 53s):
What did you do?

Randi Clites (17m 55s):
Terry, I started making calls. I was calling everybody who I could think of to try and figure-out what drugs qualify for this copay offset program through this program and who's running this program. They connected me to Saveon SP and Saveon SP had a drug list that was available on their website. It took me three months, me being as savvy as I am, and who knows what I'm doing. It took me three months to get the drug list from them. With my son's medical condition, there are about twelve drugs available to treat his bleeding disorder. All twelve of those medications are on their list.

Randi Clites (18m 35s):
They're not trying to drive me to a cheaper drug. They're not trying to drive me to a special drug that they have some special rebate on. They are targeting all people who have bleeding disorders with this program. The cheapest monthly copay on this program is $1,250 a month. The most expensive is $8,500 a month - A month, Terry! They know we're not going to be able to afford those amounts! They know they're driving us to co-pay assistance from the manufacturer. They know they are causing the manufacturer this huge amount of money, out of their revenues, and it's not sustainable.

Randi Clites (19m 22s):
There's no way, and they know that they're going to max-out my assistance. They maxed-out my assistance in, I think it was, four months. They had written me a letter that said I now owed $21,880, because I had maxed-out my assistance.

Terry Wilcox (19m 39s):
The one thing, when we're talking about our Health Plan Hero benefit designers, their ultimate goal is to create no out-of-pocket costs for the patients or really minimal.

Dr. Bob Goldberg (19m 51s):
Yeah, here, it's just the opposite.

Terry Wilcox (19m 54s):
I know. The cheapest monthly copay on the program is $1,250 a month. To end-up at the end, having maxed-out all the money that "fill-in-blank" hemophilia drug company had to give for assistance, because they're being used as a piggy bank. She is then left with $21,880 on a bill, which is crazy. No employer should literally want to put their employees through that stress, but to their point, a lot of this is happening.

Terry Wilcox (20m 35s):
They'll zero-out people who have expensive family members or other types of situations.

Dr. Bob Goldberg (20m 39s):
There are ways to save money and make healthcare, especially access to new medicines affordable, if you want to run your business that way. It sounds to me like everybody's involved in this gravy-train. It would be great to sit down and...What are the brokers doing here? Why aren't the brokers telling the patients, or the companies, about these situations?

Terry Wilcox (21m 0s):
I think the broker's soul, and this is part of a whole thing, in and of itself, the broker and the benefit designer are two different people.

Dr. Bob Goldberg (21m 7s):
That's right.

Terry Wilcox (21m 8s):
A broker is somebody who's just talking plans and they're getting kickbacks from the insurance companies to hawk them.

Dr. Bob Goldberg (21m 16s):
Yeah, that's what I'm saying.

Terry Wilcox (21m 18s):
Big kickbacks, but now we're supposed to be transparent. It's a huge driver in plan costs. I'm always wondering if that money was actually going to care for patients, and not in the brokers' pockets. What can be done?

Dr. Bob Goldberg (21m 33s):
We heard from some people that the broker's fees, in addition to what they're getting from the insurance companies, is a 48% markup.

Terry Wilcox (21m 40s):
Oh, yeah. That was one of the things that drove one of the employers we had as a Health Plan Hero honoree to independent benefit design. That's what drove them to all of this. Look, I get the issue that the pharmaceutical company copay assistance programs cannot be piggy banks. They just can't be. That's not sustainable. Everybody will lose if this continues. Everybody will lose and you know who will lose the most? Patients will lose the most.

Dr. Bob Goldberg (22m 11s):
Yep. They already are.

Terry Wilcox (22m 13s):
They already are. Look at the situation at hand, it seems to me that there may ultimately need to be transparent lanes designed, and we talked a little bit about this at Health Plan Heroes for employers and small businesses. What if they have a certain number of employees on certain types of medications, is there a lane for them to get some sort of discount, based on the size of their company?

Dr. Bob Goldberg (22m 40s):

Terry Wilcox (22m 40s):
Well, my last question to Randi and Kelly was, what can be done to fix this for patients from a policy standpoint? We have the, We the Patients Flying, coming-up on June 14th and 15th. I put it to them, what are the policy issues? What should we be talking to our legislators about? What can we do? Here are Kelly and Randi's answer.

Kelly Maynard (23m 2s):
I think number one, educating these employers as to what they're signing-up for is crucial. I think employers are trying to do their very best to take care of their employees, but as you said, what employer can withstand a 25 to 35% increase year-after-year? I see that's where these brokers come into play and they're not sharing the full story, the full picture, with their clients. Second, I think it's also very important to recognize that any patient that experiences this treatment, their only option is to file a complaint with their own employer.

Kelly Maynard (23m 49s):
Then, you sort of put a target on your back, as unemployable, because you're a high-cost healthcare expense.

Randi Clites (23m 59s):
To Kelly's point, after educating your employers, because we're really seeing, from the patient perspective, for those that are brave enough and able to go to their employer directly, because most employers do not want this to happen to their employees. Legislatively, I am part of a coalition that's called, All Copays Count Coalition. It is over 80 patient organizations coming together to support HR5801, which in Congress, will start to address a loophole, that's been allowable under ERISA plans, that is around the essential health benefits.

Randi Clites (24m 44s):
So, if a plan is actually providing prescription benefits, they cannot carve-out certain drugs as long as they are part of an essential health benefit and the amount that they put out for our out-of-pocket maximums, cannot go over a certain amount. They have figured-out a way to make specialty pharmacy not part of the essential health benefit. I think that's a way we can start to address this, is really trying to educate our employers and call these vendors out. As you mentioned, J & J specifically, going specifically after Saveon SP. We've been saying for the last two years that we've seen this trend growing.

Randi Clites (25m 26s):
This is not sustainable. These brokers and vendors are working on this after the plan design has already put in the tiers, the formulary tiers, the rebate system, and now they're throwing this in there too. The other thing that I'll say about my plan design is, my maximum out-of-pocket should be $2,900 a year. We know that my co-pay assistance has been billed over $20,000. I think that's a new level of predatory designs and I think that we need to make sure that we hold them accountable.

Terry Wilcox (26m 15s):

Dr. Bob Goldberg (26m 15s):
My God, we've had this show for what, 40-years now?

Terry Wilcox (26m 20s):
Does it feel like 40-years?

Dr. Bob Goldberg (26m 24s):
No, no, no, it feels like yesterday. This is, to me, the most disgusting example of outright exploitation of people that are sick, and more vulnerable, and it's systematic.

Terry Wilcox (26m 38s):
Yeah, it is.

Dr. Bob Goldberg (26m 39s):
How does this go on? All this boils down to, Terry, is everyone wants to use the pharma spread to fatten, or keep, their bottom lines.

Terry Wilcox (26m 50s):
Right. They will. There are rebates happening in there. There is copay assistance happening in there. There's 340B pricing. People want to sit there, and the anti-pharma club, as loud and obnoxious as it may be, is very quick to throw things out about all of pharma's sins. The fact is all of these things add up to quite-a-bit. When you keep pulling at them, and you keep pulling at their copay assistance programs, then you expand 340B in a way that it's just grotesque how much that program has grown.

Terry Wilcox (27m 38s):
So, folks, links to all of the stories discussed today are in the episode show notes, so go there and take a look. 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.

Terry Wilcox (28m 27s):
Our team is standing by to help you navigate the healthcare system and connect you to the services you need. To learn more, visit, or email us at Up next, Field Correspondent, Kate Pecora, connects with patients, caregivers, and advocates all across the country. This week, she spoke with Angela Deeds, take a lesson.

Kate Pecora (28m 47s):
Today I'm speaking with Angela Deeds. Angela is going to tell me about her diagnosis and a little bit of her story. Angela, nice to meet you. Could you start-off by talking about the conditions that you're living with?

Angela Deeds (29m 3s):
Sure. Well, it's nice to meet you too, Kate. I am currently living with gastro-paresis, which if you Google it, it says it's just like a paralysis of the stomach, and gives it a very elementary school kind-of definition, but it turns out that it's very complicated and very rare. I went on a long journey to find an accurate treatment, and the doctors with the knowledge to treat this rare disorder, because they're still studying it and trying to find-out the odds-and-ends, so I live with gastro-paresis.

Angela Deeds (29m 43s):
I was diagnosed, as a pediatric patient, with irritable bowel syndrome. At the time, it was the best they had. They didn't really have an answer, but they thought it was that. I had really great primary care physicians at home, so we went with that, and we ran with that.

Kate Pecora (30m 3s):
Talk to me about that. You were diagnosed relatively early with IBS, but after that, you must have continued to have issues and things weren't necessarily getting better. When did some of the symptoms of gastroparesis come about and when did you recognize that you needed additional help beyond what primary care providers were able to offer?

Angela Deeds (30m 31s):
After about two-and-a-half years of ping-ponging from my local gastroenterologist to a University-level hospital, to another university-level hospital, who might have a more specialized discipline in this. I found out that every hospital center has their own focus. Maybe I wasn't going to the gastroenterologist hospital, so I needed to try this one. Finally, I was able to get into a tertiary level provider, is what it's called, and that is Johns Hopkins. I had heard about it from a family friend who had finally gotten treatment for their horrible cancer there. They were telling me, just say that word, say those words repeatedly, and I did.

Angela Deeds (31m 11s):
Even with COVID going on, I put my foot down and said, "I need to be seen. Can you please evaluate my case?" That's how they take-on cases at Johns Hopkins. They sit down and decide if you're a good fit for their services and for their clinicians, which I think, is a great way of thinking about it. They're big on collaboration. They're not going to take you on if they don't have the skillset to best serve you, which would have been helpful at the other two or three hospitals I went to. Save me some time, and a couple of ER visits would have not occurred, but after two-and-a-half years, I was able to be seen. I had to do a lot of back-and-forth.

Angela Deeds (31m 52s):
My insurance companies had to do a lot of back-and-forth, because I was crossing state line, and it was a tertiary level provider. They had to have proof that past treatments weren't working, and that I was severe enough to warrant that level of care, which was frustrating. It's like, could you just look at me? I'm a blump, I'm a blop on a wall. Like, this is not normal. Once I saw them, and they put me through a special test that is only available at three or four clinics in the US, that was news to me, I got the diagnosis of the gastro-paresis.

Angela Deeds (32m 34s):
Due to just the way large hospitals work, it took me about another six to nine months to see my current doctor at Johns Hopkins. We're beginning this treatment process of finding the right treatment methods that work for my body.

Kate Pecora (32m 49s):
As you work with the new providers, the new care team that you have right now, what were some of the biggest gaps that you noticed as you were going through the process prior to meeting that coordinated care team? There were opportunities that were missed. Was there anything that you could have done, looking back in hindsight, that you might be able to share with others so that they don't fall into those same patterns?

Angela Deeds (33m 17s):
The disparity is in the two-and-a-half to three years that the testing was occurring and there's nothing I could do. It was completely out of my hands, and I hate that, because I want to give someone hope that it will be different for them, or here's how it can go different. I can't see a way of doing that. I learned how to advocate for myself by being pulled into a fight I never asked to be in. I never should have been pulled into that deep of-a-fight for my own life and my own quality-of-life.

Angela Deeds (34m 3s):
I had a pediatric diagnosis of gastroenterology. When I was diagnosed officially with gastro-paresis, it had been over ten years since someone had looked at the diagnosis. Maybe through puberty, and becoming an adult, maybe things changed. Maybe someone should have taken a look at that diagnosis prior to Johns Hopkins and not relying solely on, she's had a chronic illness and she's a hypochondriac because of it. No, not really. I didn't hate doctors. I avoided doctors. It's more of disparity of trusting a patient. You're the expert in that field.

Angela Deeds (34m 44s):
They're coming to you, because you know that field, but they know their body. Then, it was the bureaucracy. My first degree was in Political Science. I studied public policy and I was surprised, and overwhelmed, at the amount of bureaucratic nonsense that I had to put-up with whether it was operating within a single hospital, or operating across state lines, I was only crossing one last state line, not four. Johns Hopkins is about six hours, give-or-take from where I live. I know people going a whole lot farther for treatment than just one state line.

Angela Deeds (35m 29s):
There needs to be a change in how healthcare administration is done and not valuing a patient's experiences or whatever red-tape lies in the framework of our healthcare system. It should be cut and I'm not sure there have been great strides made in the past ten years, but there's still a lot of ground that they need to change.

Dr. Bob Goldberg (35m 58s):
Thank you once again for sharing your story with us today. If you want to make your voice heard, you can become our next patient correspondent. All you have to do is send an email to Terry and me at

Terry Wilcox (36m 11s):
We're so glad you joined us for today's episode. If you found something interesting, or useful, please pass the show along to a friend. This helps us reach more members of the chronic and rare disease communities.

Dr. Bob Goldberg (36m 18s):
While you're there, click the "follow" button, that way you'll get alerted when our next episode goes live.

Terry Wilcox (36m 18s):
We'll be right back here again next Friday for another new episode. Until then, for Dr. Bob and everyone at Patients Rising, I'm Terry Wilcox - Stay healthy!