Fighting to Fix the Broken Healthcare System | Hypopara Series: Part 5
In part 2 of our conversation with Michele Rayes, she shares how legislative change is a critical part of supporting and protecting people living with a rare disease. She discusses legislative bills that the HypoPARAthyroidism Association supports and provides an educational lens into how to be a good patient advocate. Michele explains specific pieces of legislation she is fighting for, like responsible AI integration into insurance claim reviews and denials, and shares why she is so passionate about advocating for yourself and others.
Watch part 1 of Michele’s interview.
Kerri Fitzgerald:
You’ve done a lot personally to make treatments possible with your work on the clinical trials, but also with the work you have done with the HypoPARA Association. You are the Associate Director of the organization. It’s a patient advocacy group that supports individuals with hypoparathyroidism. What drew you to the organization, and how did you first get involved?
Michele Rayes:
After many, many years of not really understanding my disease, and funnily enough, I was attending a thyroid cancer survivors conference when I found the organization. They were having a meeting down the hallway, and I stumbled into the room. At the thyroid cancer thing, they have 6 or 7 different sessions going on at 1 time. I was trying to find this other thyroid cancer session and stumbled into the hypopara room and sat down and started listening to the talk and thought, “This sounds like my people, wait a minute.” I ended up staying the whole day. I stumbled upon them and I went to the woman at the back of the room and said, “How can I be more involved? How can I help?” Little did I know how much work needed to be done.
Through volunteering a little bit in that first year, I realized there was no official pamphlet out there. There was a lot of education that needed to be done for the clinicians. I learned so much about my disease in just 1 year of being a volunteer for the organization. Then the next year, I was like, “Well, maybe I want to get involved in the board.” Then one thing led to another, and 2 years ago I took a leap of faith. The organization was growing by leaps and bounds. By that point, I was already in the trial, and we knew the drug was the most likely coming to market. The organization was growing very quickly and the board of directors at the time decided that they needed some people who worked for the organization, not just volunteered for the organization.
Patty and I quit our full-time jobs and became the first 2 full-time employees for the organization. It’s been such a great experience, so rewarding and fulfilling to get out there. We travel all over the country educating clinicians, participating in CMEs, creating content, raising awareness, knowing that we’re making a difference 1 patient at a time and that we’re talking to patients all the time too is just such a fulfilling career.
Kerri Fitzgerald:
That’s amazing that you can parlay your personal experience and your previous work experience to do a job that really is making a difference for a lot of people. I know a lot of the initiatives are aimed at the patients, obviously, that’s a very important group to focus on. What would you say are your biggest goals when it comes to what you offer to patients and then also what you offer to physicians?
Michele Rayes:
The organization started out as a patient support group in 1994, which was the year I was diagnosed, oddly enough. We always wanted to remain centered in that patient focus, patient first, patient education, what can we provide for them. You cannot address the patient as a whole without making sure their providers have the education they need and that they understand the disease. One of the big things that Patty and I have been working on in the 2 years since we started working full-time for the organization is making sure that the patient’s voice is brought to the table in all kinds of situations. You can’t talk about a new drug if the drug didn’t bring the patient voice to the table. As many new companies come to the table, we try to be there from the beginning for them and make sure that they’re including the patient’s voice, that they’re looking at the data of how it affects the patient.
We go to conferences, clinical conferences all the time and make sure patient voice is brought to the table. If a new CME is coming up, we want the patient voice to be a part of that CME. While we want the clinical evidence to be there, if the endpoints aren’t meeting what the patient needs or we’re not recognizing how it’s affecting the patient’s daily life, then your endpoints are meaningless because they’re not moving the needle forward for the patient. From the backend of that, while it may look like we do a lot of work on the clinician side, that work in the end is to make sure that it makes a difference for the patient while still listening. We also can’t talk to the clinicians about what’s important to the patient if we’re not constantly talking to the patients to say, “What is important to you? Now that we have a medication, how has that changed?”
Kerri Fitzgerald:
Would you say some of what you hope to achieve on the clinician side is improving the awareness of the condition and advancing care that clinicians are able to provide to patients?
Michele Rayes:
Absolutely. We want to educate them. The average clinician, what a lot of patients don’t realize, gets frustrated quickly. We often hear that they fire endos quite frequently, but what they don’t realize is the average endocrinologist only gets about 1 paragraph about hypopara in their schooling. If they graduated from school 10 to 15 years ago and they never saw a hypopara patient, remember we are rare… They may only see 1 in their lifetime and you’re it. They don’t know a lot, or they forgot that 1 paragraph, and they have all these other disease states that they need to be aware of. They need to know about adrenal insufficiency, diabetes, thyroid disease, and they can’t know everything 100%. What is more important, and what I often tell patients that I talk to is that you need a physician who is willing to listen to you and learn with you.
They don’t have to already have the knowledge on board. They’re smart enough to figure out what they need to know. They just have to be willing to listen and not be dismissive. If you can find a physician who’s willing to listen and they’re willing to learn, don’t fire them. Don’t be so quick to fire them because they don’t already have the knowledge. They might be your best advocate.
Kerri Fitzgerald:
That’s good advice to give to people. To acknowledge the challenges that clinicians face and the way our health system is set up. I think you and the organization providing education, awareness, and also just asking that physicians bring patients in and have it be a very collaborative relationship in terms of how their condition is managed is really important. What would you say you’re looking forward to most in the coming months or year as it relates to your work with the HypoPARA Association?
Michele Rayes:
Oh, my goodness. We have so many exciting things going on right now. I think 1 of the biggest things that I’m excited for, and this is true not just for hypopara, but for a lot of rare diseases, especially when there’s a genetic component, there’s such a long diagnostic journey. When you’re post-surgical, while your diagnostic journey may be longer than what you think it should be, it’s generally not going to be years and years. For the genetic patients, sometimes it’s 6, 7, 8, 10. We recently met someone who was 40 years before they got a diagnosis.
Kerri Fitzgerald:
Wow.
Michele Rayes:
Imagine living poor quality of life your whole life and there was a diagnosis someone could have found 40 years before that. There’s a lot of work to be done in that forefront. What I’m excited about is we have partnered with a company who is currently making a targeted therapy for genetic purposes, but they don’t care just about that 1 particular genetic component. They care about the diagnostic journey overall and about our patient population overall. They’ve partnered with us to allow us to offer no cost genetic testing to patients. Anybody that has possibly 1 of the 26 known genes can get free genetic testing through the HypoPARA Association.
Building upon that, we’ve started doing what we call family genetic testing events. If you’ve already been diagnosed with 1 particular type of hypopara, we will help you get genetic testing. Sometimes a doctor says, “Well, we don’t need to test your mom, your dad, your brother, your sister, your aunt, your uncle,” whoever, even though they may have been having symptoms and they were dismissing them as other things. Now they know you had the same symptoms, and you got diagnosed with this rare disease. A lot of doctors are still hesitant to do genetic testing.
I’m excited about the genetic testing project because I want to see these people get a diagnosis sooner, get help sooner, maybe feel better, and realize that they didn’t have to live this way. I’m super excited about genetic testing.
Kerri Fitzgerald:
That’s really incredible. That’s important for a lot of rare conditions, getting that genetic testing not just for yourself, but the broader family tree.
Michele Rayes:
It helps you make some important decisions in life, and it can be so individualized for different people. If we get the next generation tested, that can help them be better informed about how they plan for families, how they maybe make choices, career choices or even be something people take for granted like being athletic. Maybe you make different choices based on, “I know I have this diagnosis, and I know I need to be more cognizant of how I take in my electrolytes because calcium is an electrolyte.” You make better informed choices for your own health, also maybe family planning choices.
Kerri Fitzgerald:
Yeah, that’s a really good point. It’s not just getting the diagnosis, but how you set up your life to optimize life with a chronic rare condition. That’s incredible work that you’re doing with that company. I know that you’re also very involved in advocacy efforts and you go advocate on the Hill quite often. What are some areas of advocacy that you personally are trying to advance?
Michele Rayes:
I have a couple personal passions, bills that the average patient doesn’t understand, but I feel compelled to fight for those who don’t know, which I just think healthcare overall is important for all people. I’m personally very passionate about PBM reform and part of that comes from how it affects all patients. I got involved in that because my previous career was in pharmacy and I saw how it affected pharmacies, not the real big ones, but smaller pharmacies, and how it affects drug prices overall. What people may not know is PBM stands for pharmacy benefit manager, and a lot of people are quick to say, “Oh my gosh, these pharmaceutical companies just want to steal all our money, and they set these really high drug prices.”
What the average person doesn’t know is that drug prices are actually set by pharmacy benefit managers who don’t work for the drug companies. They negotiate prices between drug companies and insurance companies. Do your research before you say, “That drug company just wants to take all my money.” Our healthcare system is not set up to work for the patient, unfortunately, but drug prices, PBM reform would help. It’s a big part of what would help set drug prices better for the patients. I’m big about that one.
I’m big about things like sensible AI. AI is a big thing in our world right now. A lot of patients don’t realize that AI is being used to deny your coverage claims. I’m big about sensible AI or responsible AI usage in healthcare coverage. I happen to live in 1 of only 3 states right now that has a bill that was passed to make sure that it’s being used responsibly. The rest of the US is lagging behind, and we need to make sure that we’re not being denied without human eyes looking at our claims. Those are 2 of the big ones that I advocate for on the Hill.
Kerri Fitzgerald:
Yeah. Healthcare is such a pervasive thing. Everybody can relate to navigating the healthcare system in some way. Doing advocacy on behalf of advancing our healthcare system, it’s important, particularly for you and people with hypoparathyroidism. What do you think are the most important areas of need for patients, with not just hypoparathyroidism, but other rare or chronic conditions?
Michele Rayes:
Something that’s important, whether you’re interested in getting involved in advocacy or not, but especially if you’re interested in getting involved in advocacy, is that you need to educate yourself on how the system actually works. Like the PBM example I gave, there’s many other examples in our healthcare system here in America where I don’t think patients really understand how the system works. Sometimes, not understanding how your doctors are educated. You need to understand this first and try to educate yourself on basic terms like, what is a PBM? What is a prior authorization? What is denials? Know that most insurance denials, less than 1% of them, are ever appealed. Why is that? Why are you not appealing? Why is your doctor not appealing?
I think those are important things. Start with the basics like that and figure it out. Know that the best way to get your coverage is not to sit back and go, “Oh, well, they denied it, and I’ll just go take something else or I just will suffer.” Know that the system is set up so that they can deny because they know you aren’t going to appeal. I think that’s important. If you’re going to get involved in advocacy, educate yourself and it’s easy to do. I shouldn’t say easy. It can be time-consuming, but there are organizations out there who have already invented the wheel. Don’t try to invent it yourself. Don’t depend on AI to tell you the right way to go about it. There are organizations like Haystack, Patients Rising, EveryLife Foundation. They already have the education built into their systems and you could go on there and they will teach you how to talk to a Congressperson, what the bills mean, what terms like prior authorization mean, and how to navigate the system.
Unfortunately, the system as a whole, we’ve already said is broken. I think the biggest thing for patients to realize is you experience healthcare as a system. In order to make the needle move when you’re doing advocacy, you have to fight it piece by piece. Sometimes when you’re fighting those little pieces, it affects the whole wheel. Sometimes it doesn’t and it doesn’t seem like we’re moving the needle fast enough because we’re fighting little pieces. That’s the way the legislative system is set up, in pieces and parts, not in a whole system. They don’t look at the system as a whole.
Kerri Fitzgerald:
I can imagine it becomes a little disheartening when things don’t move quickly. It is a little bit like pushing the boulder up the hill, right? But it’s important.
Michele Rayes:
Yes, definitely.
Kerri Fitzgerald:
It’s important that you and many other people, some of those organizations you mentioned, are doing that work because that’s the only way we’re going to get anything to change is just to keep adding…
Michele Rayes:
That’s right. Just like the insurance denials, you can’t give up just because we’re denied. I learned when I tried to get my medication approved that even a final denial is not necessarily a final denial. Don’t give up.
Kerri Fitzgerald:
That’s great advice. How can people get involved or learn more about the HypoPARA Association?
Michele Rayes:
The best way is to go to our website, hypopara.org where we have forms on there for contacting us and joining our community. Joining our community currently would get you our quarterly newsletter and will also get you on our e-blast list. If there’s an important scientific article or a new clinical trial starting, we send out e-blasts about those types of things. If you just want to know the basics of our disease, I would say just explore our website. There’s a plethora of information. We also have a YouTube channel that has some experts from around the world do videos for us or speak at our conference that will give you some excellent insight into what this disease is about.
Kerri Fitzgerald:
That’s awesome. That’s great. Michele, we like to conclude our My Hero 360 interviews by asking the same question of everyone. What would you tell your younger self knowing what you know now?
Michele Rayes:
I would say it’s in your best interest to become an expert in your own disease. Don’t be afraid to come to your doctor with knowledge. I said earlier, our doctors, again, because of the system they’re in, they work within the system they’re in and they have less than 15 minutes to see every patient in order to pay their bills. It’s just a fact of the system. They don’t always know everything they need to know. If you come prepared with the knowledge and present it in a friendly manner and say, “Hey, I found this 1-pager…” Don’t overwhelm them with a book this big. If you come with a 1-pager that says, “This is the information I have about the disease, and I seem to be having these symptoms here.” That’s a great way to start the conversation.
I will also tell the patients, if I knew more when I was younger and I wish I knew to say to my doctor, you can’t just come in and say, “I’m tired all the time,” because tired all the time is the signal for 10,000 different diseases. Come to them with specifics. Sometimes that means maybe journal for a couple of weeks before you come to your appointment, because we all know you make that appointment. It’s not for weeks away, sometimes months away. Record, “Every day like at 3 o’clock I feel like this,” or “I can’t perform my daily activities like grocery shopping,” or… If you have specific examples, that’s something they can do something with. Just saying, “I’m tired all the time,” you’re less likely to get their buy-in. Become an expert in your own health and come with details. I wish I would’ve done that sooner. Maybe I would’ve understood my disease sooner.
Kerri Fitzgerald:
Yeah, that’s really, really salient advice. You’re the best person to advocate for yourself, right? You live in your body…
Michele Rayes:
Always. This is so important because you are the expert in your body and your disease. Nobody can tell you what you’re feeling besides you and that’s important to remember. They are an expert in scientific evidence. You are an expert in your body. Can’t say anymore.
Kerri Fitzgerald:
Yes, that’s so true. Michele, thank you so much for sharing your lived experience with My Hero 360. Your work with the HypoPARA Association and your advocacy efforts are so admirable and so important for the advancement of resources and research for this patient population that you understand on a very personal level. Thank you again. We appreciate all the insights you’ve shared.
Michele Rayes:
Thank you for having me and for helping us spread awareness about our disease.
Connect with the HypoPARA Association:
https://www.hypopara.org/
https://www.youtube.com/channel/UC8fpei7liF73LFflvU6zZHw
https://www.instagram.com/hypoparaassoc/
https://www.linkedin.com/company/hypoparathyroidism-association/
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