About the Speaker:
Lilly Stairs is the head of Patient Advocacy at Clara Health. A company working to connect patient’s clinical trials and a patient living with psoriatic arthritis diagnosed at age seven and crohn’s disease.
Psoriasis Diagnosis at Age Seven
First of all at the age of seven I was diagnosed with psoriasis. Mine was gutty so it looked like chicken pox all over my body. I was never told that it was an autoimmune disease. I was also never told that 30% of people that were diagnosis psoriasis will get psoriatic arthritis. So fast forward many years to when I turned nineteen, I was just throughout the summer, and I started to develop this underlying pain.
Then one day I woke up and I just couldn’t even move. I was to the point where my mom had to dress me, she had to feed me and my whole body was paralyzed with pain. It was at that point that I was diagnosed with psoriatic arthritis. When I say pain, I mean I was put on a whole slew of narcotics and none of them did anything to help. At the age of nineteen, two autoimmune diseases weren’t enough, so we had to add a third and I was diagnosed with crohn’s disease six months after psoriatic arthritis diagnosis.
That happened after I was in and out of the ER three times in one weekend. The doctors at the ER unfortunately didn’t believe I was dealing with pain. I would try to swallow water; I was in agonizing pain just trying to swallow water. It was awful. They thought that I was just trying to get access to pain meds. The third time I went to the E.R. I was finally admitted, I was in the hospital for a week, they ran a series of tests. Finally, they did a capsule endoscopy and that’s when they found bleeding ulcers in my small intestine, and I was diagnosed with chon’s disease.
Women, Autoimmune Disease and Pain
About 75% of the patients who are living with autoimmune diseases are women. Some studies show that women are unfortunately not always believed by physicians that they are in pain. They are put in the situation where they need to prove their pain, there are countless studies on this. This has happened for so many patients living with autoimmune disease and it’s something that happen to me as well. I had gone into the ER three times in this agonizing pain, pain I had unlike anything I ever experienced, and they didn’t believe me.
They thought I just wanted morphine, that I was trying to get access to drugs or that it was all in my head. Here I was this very happy otherwise healthy 19-year-old who wanted to be back in school, wanted to be back in college, didn’t want to be in the hospital bed but here it was. I was afraid because nobody believed me, and I didn’t know that I was going to get the treatment I needed. We need to see a change of mindset, a shift in mindset in some of these physicians—out of the idea that—-acknowledging these biases that the health care system has against women.
Access, Insurers and Healthcare
I have been incredibly fortunate when it comes to access in my experience as a patient. I have had insurance throughout the entire time and they’ve or been wonderful about covering the medicines that my doctors prescribe. This is refreshing, because with the work I do oftentimes I hear about how patients do not get access to the medicine their physician wants them to be on. Right now we have insurers playing doctors and saying “Well I know your physician wants you on this medicine but we’ve cut a deal with this person and so we need to give you this medication first or you have to go through step therapy before you can get to the medication that you need”. So I have been fortunate, in that every single medicine my physician has prescribed I’ve been able to get access to it.
Step Therapy; From the Perspective of A Patient Living with Autoimmune Disease.
Step therapy is when you are forced— this happens a lot to autoimmune disease patients. When you are forced to go through a series of medications before you can get to the one that your physician wants you to be on. So it makes you try something and some of these medications maybe they’re less expensive, maybe they are less potent than some of the other medications. But they are making you go through it because the insurance company wants to make sure that they’re not spending extra money.
What I will tell you is that unfortunately, with many autoimmune disease patients their disease progresses because they don’t get access to the right medication. For example, let’s say I’m a patient who’s just been diagnosed with crohn’s disease and my doctor wants to put me on what’s called a biologic, but they’re not going to let me go on the biologic.
My disease is very severe but the insurance company says “No she has to try this drug, and this drug before she can get access to that biologic”, the biological that my doctor wants me to be on. During the time that I have to try X, try and fail X. Y. and Z, go through these steps, my disease progresses, and some people’s diseases progress so much that they need surgery. In the end has the insurance company saved any money? No because now they have to pay for surgery.
Therefore, step therapy is bananas to me, it doesn’t make any sense. Its intended to save money and it’s not. So we need to re-evaluate what that looks like, maybe that’s worked for other diseases in the past but with these complex chronic illnesses it’s not OK. Medical switching is when insurers are playing doctor. So let’s say my doctor wants me on a medication —- you have biologics which are these entire class of medications. They tend to treat patients with autoimmune diseases. Insurance companies view them as being all in one class and therefore they’re all the same, so they’re interchangeable.
The problem is that if my doctor wants me on a drug that have a specific target—i.e they all have different mechanisms of action everybody biologic. If my doctor wants me on a drug IL12 and 26 the Interleukin 12 and 26 that specific mechanism of action. Sometimes the insurance company could turn around and say “No we want to put her on a different biologic that’s an anti TNF inhibitor”, but anti TNF inhibitor don’t work for me. So they’re just saying “Oh they’re all biologics, they’re all in the same class its fine. This is our preferred drug she needs to be on so that”. Then the insurance company comes back and they change the prescription that the doctor prescribed to the patient. That’s how the insurance company is getting involved in the decision between the doctor and the patient.
The need for change in step therapy practices.
How is this legal? It’s a great question. I don’t know! I sat on a commission in Massachusetts this past year where we did some research on how dangerous this practice can be and how it costs the Commonwealth. The report hasn’t been release yet but I’m hoping it’s going to be released soon. I am also hoping that there is going to be a bill that is put into place to prevent this from happening. We’re just starting to see non-medical switching bills come out. They are detrimental to patients truly and It’s difficult.
Dealing with Stigma while Living with Chronic Illnesses
It is so difficult to live with chronic illnesses when you are a child, teen, young adult into adulthood. At the time (during childhood) I remember when I was that and had psoriasis I was so afraid for other people to see it at school because I didn’t want them to think they were going to get it or that it was contagious. I always felt very uncomfortable wearing a T-shirt, it was embarrassing for me.
Then here I am at age 19 with arthritis. You think only old people get arthritis or that’s the mentality that we have in society, when in reality they’re actually so many young people who are living with arthritis. It kind of gives you a complex right. Then you have to deal with “OK now dating is in the picture and how do I talk to somebody about the fact that I have these chronic illnesses and are they going to, or will anybody ever love me”.
These are the things that run through your head when you’re first diagnosed, that’s why I think it’s so important that we have advocates out there. We have some amazing chronic illness advocates in the community who talk about what it’s to live with chronic illness and give other people hope that it’s going to be okay.
Switching into the Role of a Patient Advocate
I’ve always been a person who is for the underdog and I think it’s been a part of my nature. From the time that I was in the hospital bed—- let’s say I was in the hospital bed for Crohn’s disease this was my third autoimmune diagnosis. Keep in mind, I had never heard the word autoimmune before. I’ve never heard the word autoimmune and I was now living with three diagnoses. How is that possible?
There are 50 million Americans who are living with an autoimmune disease. For a point of reference, that’s about twice as many as cancer and we all know somebody living with cancer right. There are twice as many people with autoimmune diseases but we’re not talking about them. I remember being in that hospital bed and saying “This isn’t right. This is something that I’m living with and I had no idea I never even heard about it before”. I felt compelled from that moment in time if this was my reason for being.
This is something that I needed to do to help others. And so from that moment I actually left the hospital—actually while I was in the hospital I kind of started cooking up ideas for ways that I could help start to raise awareness. Then began the journey through the healing process, through my journey into remission. I spent the time I got on Twitter and I started talking to fellow advocates, I said: “I want to blog about my experiences. I want other young women and young people who are diagnosed with these diseases to know it’s going to be okay”. I just knew from the moment I was in the hospital bed that it was my calling that I needed to help others.
Visible and Invisible Illnesses
It’s hard to say advantages and disadvantages when it comes to physical versus invisible. And it’s interesting because I’ve had conversations with other patients who have a physical disability. We’ve talked about the fact that, OK I have a physical disability somebody has a physical disability that so people automatically understand right. They maybe have empathy for you right away. But also people with physical disabilities get frustrated because they don’t want people to now treat them differently necessarily.
This woman was telling me once she says “People will like to talk to me like I’m a baby, and I’m OK. I’m in a wheelchair but I’m fine”. There is an automatic empathy there. Invisible illness, it’s tough. People don’t get it, they don’t understand that when I am standing there and I look OK and I put makeup on in the morning I might be exhausted. I might be to the point where I can barely talk I’m so tired. I can barely take a shower I’m so tired. But nobody can see that and they think I look fine so they think everything is okay.
I’ll never forget I was on the MBTA, the local Boston public transit and I was coming back from work and I was in so much pain, my arthritis was flaring, I was sitting and an older woman got on to the train. People were looking at me like I should stand up to give her my seat, I was like “These people probably don’t even know I am in worse condition than this older elderly lady standing here”. But, nobody saw that people just see what they think is a healthy 19-year-old. In terms of society, these preconceived notions and assumptions that people have about diseases can be frustrating.
When people had found out that I have Crohn’s disease they’re like “Oh isn’t that a disease where you run to the bathroom a lot” I’m like “No, that’s not actually what my experience has been”. I have bleeding ulcers in my small intestine and that was the only symptom I presented with. Now that wasn’t a great symptom to be living with but that’s a very different experience. Then when people say “Oh I thought only old people get arthritis”. Okay, a little bit of joke “you’re like an old lady” and it’s OK, you get used to it but it can be a little frustrating.
Addressing Societal Stigma
Try to be open and understanding that all these diseases present very differently for each person and be respectful of what somebody is going through. Also, not jumping to the conclusion that just because I look OK means that I am capable of doing everything that somebody else is doing. Sometimes I’m going to be so exhausted I can’t go out to dinner because I physically don’t even want to hold myself up, I just want to lie down and sleep.
Desires for the Future of Healthcare
I will tell you one of the most devastating things I have is the financial devastation that chronic illness can put on patients and families. I have watched and heard the stories of patients who have jobs, they are contributing members of society. They have families and all of a sudden they are diagnosed with chronic illness in their insurance doesn’t cover the medicine they need you to know they have so many medical bills that they just can’t afford to keep up and they go bankrupt.
They lose everything and they were doing everything right. Although they had jobs they were contributing to society, they lost it all. That is not fair. Because they were dealt this, they got this disease, they didn’t ask for this disease. They didn’t ask to be diagnosed with a chronic illness, they didn’t do anything to prompt them to be diagnosed with a chronic illness. But here they are and this is the hand they’ve been dealt. They are not being supported by our current system as it stands and I have a huge problem with that.
Finding & Facilitating Patient Empowerment and Advocacy
I knew I wanted to dedicate both my personal and professional life to patient advocacy from the time I was in the hospital bed. I discovered through some of the work that I had done in healthcare already that the patient voice was missing in a lot of what we were doing. It’s really interesting because I think the biotech industry has done a decent job bringing the piece of patients of the patient voice in over the past ten or so years, but we’re not seeing that on some of the health tech and digital side of things. So, it was really exciting when Clara Health brought me on as their head of patient advocacy and one of the founding members of the team.
It was refreshing to see that they wanted the patient voice in there from the beginning and so through this, I have had the opportunity to champion the patient voice internally and externally. What is most important to me is that we are doing is that we are empowering patients with the knowledge that they have the power in their healthcare journey. They own it, they make their treatment decisions, they decide how their care is managed. It is up to you, it’s up to you to own that and to feel empowered to own that.
I think they lack that just because when we talk about this, i.e the societal constructs that are in place when you look at the doctor-patient relationship. Patients need to know that this is my body, this is my choice what I do with it and I have every right to seek a second opinion. I have every right to challenge this diagnosis. I have every right to challenge the treatment options. That’s important and so for me to have the platform to be able to do that with Clara Health has been amazing. To work on the Patients Have Power Campaign and empower other patients with this knowledge I couldn’t ask for a better job
Patients Have Power!
Patients have Power means to me that patients own their journey. It means all of those advocates that I have the opportunity to work with every day. I work with so many patients who inspire me to be more empowered in my healthcare journey, who are inspiring others every day to be empowered in their healthcare journey. We as a community are powerful. We collectively as patients have power and that’s what it means to me.