Why those of us with scleroderma need patient-centered care

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.

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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.