To improve care, doctors and patients must be in it together

In just over a week, more than 16,000 rheumatology professionals will gather at the American College of Rheumatology’s annual meeting in Orlando, Florida. The Eosinophilic & Rare Disease Cooperative (ERDC) will be there.

ERDC, which my wife and I cofounded, is the organization that brings you the Hospital Emergency Advocacy & Treatment (HEAT) Kit. We will have a presentation on the ANCA Vasculitis Decision Tree: Best Practice Suggestions, a free navigation tool we built alongside rheumatologists, nephrologists, pulmonologists, and people living with these diseases. And we will have a booth where physicians can stop, talk, and think with us.

One of the things we most want to understand is what shapes prescribing habits. Not to advocate for any one treatment, but because the gap between what exists and what gets prescribed has been one of the most persistent and painful realities of living with a rare disease — or any disease for that matter.

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Research on medication adoption in rheumatology and other specialties consistently shows that new therapies take years, sometimes a decade or more, to reach widespread clinical use. I have watched this pattern across ANCA vasculitis, Parkinson’s disease, myasthenia gravis, IgG4-related disease, and neuromyelitis optica spectrum disorder.

New treatments come to market. Some are more targeted, more precise, and with far fewer side effects than what came before. And many people living with those diseases are still not receiving them. Sadly, some of these treatments are taken off the market because manufacturers just cannot afford to make them with a slow uptake.

Other disease communities are filled with the same story: people who found out about a newer therapy themselves, brought it to their physician, and were told to stay the course on something older, either by their provider or their insurance company.

I was one of those people. I have been on treatments that were effective in the bluntest possible way — effective like an atomic bomb, with a blast radius and fallout and weeks of recovery, only for me to have to gear up to do it all again six months later. When I was finally able to access a newer targeted biologic, the difference in my quality of life was not subtle. Drone strike versus atomic bomb. Completely different human experience.

Finding solutions together

I want to be clear about something: I do not believe physicians are failing us out of indifference. I believe it’s the opposite. Physicians incur an average of $227,514 in medical school debt because they want to be part of a healing journey. That is not a small thing. And then the system that is supposed to support that work actively dismantles it with mandated short visits, prior authorization requirements that 95% of physicians say contribute to burnout, denials, and delays. The system is consuming them. It is sucking out their spirit.

Just as we cannot simply decide to will ourselves past ANCA vasculitis or completely give in to the challenges of it, physicians cannot will themselves past a system that is actively working against meaningful care. Nor can they give in to the systemic challenges. We have to find solutions together, because neither of us can do it alone.

That is what ERDC is doing at the rheumatology conference this year. Listening. Learning. Asking. We will have brief one-on-one conversations with physicians specifically to understand what they know, what they do not, and what would make a difference. Because the truth is that every piece of information we gather from physicians and our community is only useful when it is put together, blended with fresh thinking, and tested against real experience.

Which is why I am asking something of you today. ERDC is conducting a survey called What I Don’t Share With My Doctor, and we want to hear from you. What do you hold back? What have you wanted to ask that you haven’t? What do you wish your doctor understood about your daily experience? We will bring what we hear from this community directly into the conversations we are having at the conference. Your voice will be in that room.

Energy is capacity. It looks different for each of us from hour to hour. This is true for patients, but it is also true for physicians working inside a system that leaves them very little to spare. In a previous column about holding on loosely, I described what becomes possible when we stop trying to control what we cannot and redirect that energy toward what we actually can change. That is the work we are trying to do.

If you have a physician who sees you clearly, who fights for you inside a system that makes that harder every year, please tell them. And if there are things they still don’t know, tell us. The next iteration of better care is built from what we share.

Note: ANCA Vasculitis 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 ANCA Vasculitis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to ANCA vasculitis.