Why those of us with scleroderma need patient-centered care
Insurance plans and limited community resources can thwart treatment
This year, after 30 years of being unable to access treatment for my scleroderma, I began taking mycophenolate mofetil, an immune suppressant, for the disease.
The last time I’d been able to access treatment, I took an antifibrotic medication. After my symptoms improved, though, my treatment was discontinued. At the time, I didn’t know why. Not long after that, my symptoms returned and steadily worsened. I spent the next 20 years asking for treatment, but couldn’t get it.
My prescription for mycophenolate mofetil this year came seven years after I first asked for it. For seven years, I did without.
In my view, what I needed was more patient-centered care.
Patient-centered care places an individual’s specific health needs and desired outcomes at the heart of all care decisions. Until recently, I realized, I’d been invisible in my own healthcare. And because I was invisible, so was my scleroderma.
I discovered that my specific health needs and desired outcomes weren’t being considered in my care providers’ decisions. Over time, my biggest problem was that I wasn’t allowed to participate in decisions about my care. I was supposed to be part of my care team, but I wasn’t. I had no choice in what was happening to me as a patient.
And if I had no choice, I had no patient autonomy. If I had no autonomy, I had no voice. All of this meant that I wasn’t seen. I felt invisible because I was.
Accessing the right care
I live in an urban city in Northern California, but it isn’t near a scleroderma center, which is true for many. To find a specialist who can give us patient-centered care, some of us travel hundreds or even thousands of miles. But when we find a specialist, we’ve found a true partner.
Where we live, therefore, can determine our health outcomes. Because community resources differ, it can be difficult for many people with scleroderma or other rare diseases to find care within their community. That becomes especially problematic if our insurance plans, like mine, require care within our geographic community if we’re to receive our benefits.
For these and other reasons, it’s essential that patients have access to scleroderma specialists and treatment centers. Our access to physicians who are experienced in caring for our rare disease can be a key factor in our ability to manage our condition, and delayed diagnosis and treatment can adversely affect our disease outcome.
Patient-centered care comes from better access and will lead to improved outcomes. African Americans with scleroderma have worse outcomes than other races, researchers have shown, partly because they often lack access to care.
And then there’s health insurance
Further, my HMO says that if a specialist I need isn’t available in my insurance network — which is largely restricted to my geographical community — I have to wait until one is. That means I may eventually get the care I need and have it covered, but I have to wait for it. How long? Who knows?
To get care for my organ involvement, for instance, I have to wait for a specialist who knows about my disease to join my HMO. When that happens, the whole process starts over again, because my insurance company doesn’t seem to accept the opinions of physicians outside my network — including the two from Stanford University who diagnosed my diffuse systemic sclerosis a year ago this month, confirming a diagnosis I received in 2022.
Now, thankfully, I have an in-network rheumatologist in my community, which is why I’ve been able to get the mycophenolate mofetil to treat my scleroderma and interstitial lung disease. He wondered why I’ve gone so long without treatment.
Good question.
But I think I have an idea how this delay happened. I’m not positive for a range of autoantibodies that are associated with both diffuse systemic scleroderma and limited scleroderma. But I am positive for U1RNP, one of the most common antibodies found in African Americans with scleroderma. It’s also found in scleroderma overlap syndrome.
My health insurance seems to be saying that because I don’t have one of those select autoantibodies, I don’t have scleroderma — even if my doctors say I do. Thus, in my plan’s words, such care isn’t medically necessary.
Because of these issues, I still feel invisible in my care. And for our best outcome, we patients should always be seen.
Note: Scleroderma News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Scleroderma News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to scleroderma.
About the Author
Kharol Means
I am SO happy that you now have the medications you so need!!! I am now 75, white and female. I was diagnosed with scleroderma dermatomyositis overlap about 8 years ago and have been on myfortic for my interstitial lung disease since. So far I am stable. The next medication would be Ofev which I do not want to take. It so happens that I live just outside of Denver, CO where National Jewish Health is located. I realize how fortunate I am to live near NJH as I have seen so many fly or drive for miles for care. In our day of AI I pray that others like you will be able to access care they might not have had access to before. Wishing you wonderful days ahead. Kharol
Cathy bolin
I need help with sclerodderma. I have a dr here but only treats my skin an I have it all through my body.were can I go? Thank you
Marta Farlin
I was diagnosed 35 years ago. At the time I had an HMO insurance. It didn’t help me with anything. It was amazing when I was healthy but not when I was diagnosed with systemic sclerosis. The company decided I no longer needed a rheumatologist when I went into remission about a year later. They cut me off. They weren’t thinking of what could happen to my internal organs. At the time the scleroderma was just attacking me on the outside and it was painful. I talked to a friend’s mother who worked in a medical office and she told me that my insurance was referred to as Group Death not Group Health. That was enough for me to change insurance companies, but we had to wait for opening season for insurance. Until then, we paid my costs out of pocket. We then got the best insurance for me and it has given me the opportunity to have a team of doctors that work together and are proactive. They don’t wait til something happens to me, they are always drawing blood and checking levels. I have since 1990, 35 years ago, accrued several conditions INCLUDING GERD since my pregnancy that began in 1989 and came to fruition in 1990, asthma in 1991, heart murmur in 1991, Interstitial lung disease in 1999, Raynaud’s Syndrome in 1995, Hashimoto’s low thyroid in 2004, Macular degeneration in 2010, Sleep Apnea in 2010, pulmonary hypertension in 2017(?) and Autoimmune Hepatitis in 2020. I’m told that the scleroderma didn’t cause it, but I think having one autoimmune condition leads to more.
I see most of my doctors twice a year. The pulmonologist sees me once a year for my annual cardiovascular sonogram of my heart and lungs and my pulmonary function test. I see my rheumatologist twice a year and she does a complete panel of bloodwork both times that covers everything possible except for cancer. I also see my liver doctor twice a year. I am having a Fiber Scan next month. I would think about insurance that is not an HMO. They are great for healthy people but not if you’re ill. Prayers.
Tina T Roberts
My story, I have scleroderma. The signs are all there I get sick. But every time it hits me it's totally different side effects every single time. oh but when I get tested by a specialist they say that I don't have it. Which is a bunch of bull because I know I do. I have a positive a&a. And the medicine that I'm on barely works for me. It keeps me kind of out of bed but not all the time. I don't know anything about my disease I only learned a little bit about it. There should be some kind of community get together with people that have this disease because they're the only ones that understand it.
Marion lorette
I LIVE IN FLORIDA CANT FIND A DR THAT KNOWS A LOT ABOUT SCLERODERMA
RHONDA R GLAUDE
That is a comfort to hear. I have all of the same diagnoses in all areas.
Maura DeNuccio
I too have Scleroderma. I’m very lucky to have a team of Drs. treating all aspects of my disease. I am being treated at Cleveland Clinic. All of my Drs. treat me with dignity and respect. They include me in all aspects and decisions about my care. I’m so sorry about your experience. It shouldn’t be that way. Cleveland Clinic treats people from all over the world. They also do remote visits. I wish you could go there.
All my best for your journey.
Marsha Hinnen
Bless you, Tomisa! You are an absolute scleroderma warrior! I was fortunate that despite the fact that I also lacked the typical autoantibodies for SSc, I was diagnosed with the disease within a few months (8 years ago). The panel of pulmonologists at our state medical school who were reviewing my case felt the preponderance of my symptoms indicated scleroderma despite the lack of blood markers for the disease. The rheumatologist they brought in agreed with that assessment. Thankfully, my insurance accepted their diagnosis. I have taken mycophenolate mofetil ever since & credit the drug with making a huge difference with my ILD. I hope you have a similar success story now that you are on the drug!