“Hey baby, there ain’t no easy way out… I won’t back down.”
We just got back from Miami from the ACR Research Education Foundation (REF) RA Investigators’ Meeting where important research topics were discussed such as
- lung disease of RA – our 2nd leading cause of death
- Rheumatoid heart disease research
- Porphyromonas gingivalis and the pathogenesis of Rheumatoid Arthritis
On the ride home today, we heard Hotel California. Isn’t RA like this? “You can check out any time you like, but you can never leave.” Just today, I have a useless swollen hand, screaming shoulders, and stuck knees. Plus my neck… I sure do want a way out.
But I got home & played a different song: “I’ll stand my ground. And I won’t back down… Well I know what’s right. I got just one life.” So I’m typing with 2 right fingers (I’m a lefty).
Some initial responses to the REF RA Investigators’ Meeting
1) Progress in RA will come with collaboration between specialties.
We have a long way to go, but there are cardiologists, epidemiologists, and pulmonologists working on RA. One who I talked with agreed with something I often say – that we are a couple of decades behind diabetes. But REF has begun to build inroads. One of more interesting speakers was a cardiologist who began his talk thus: “I was not even aware until two years ago that RA patients have higher incidence of heart disease.” Now, he has a lab dedicated to studying it. This is what the REF is doing.
2) Collaboration with patients will also be necessary.
It is an obviously essential piece. We heard mention of the need for patients to participate in research by cooperating with studies or tissue donation. We heard discussion of how doctors should communicate to patients concerning meds. Yet the patients’ perspective is missing. One researcher did tell me about a new way the NIH is integrating the patient voice in specialties other than rheum and how we might bring that to rheum one day. Another spark if hope!
3) I can’t back down even if I want to, since my RA won’t let me.
Meetings like this are well-established ivory towers. It’s uncomfortable for doctors to have a patient in the meeting, even as a reporter. They may not know about e-patients in other specialties or how that’s happening even with rheum in other countries.
There is also extreme irony to know how many people need rheum care or answers, including myself, and be in a room full of people who may hold some keys to it. It was a peculiar situation that only Katie Beth and I were aware of. Perhaps they assume we all have care equal to what they aim to give patients.
This did make me feel like shrinking back. How many times I’ve said I wish I could back down about RA and this were all just our exaggeration –but it’s not. So I’ll have to have courage to speak the truth every chance I get. “Courage is not the absence of fear but rather the judgment that something is more important than fear. The brave may not live forever but the cautious do not live at all,” The Princess Diaries.
Related reading
- Positive Signs for Rheum Patient Activism
- E-patients’ Role in Healthcare Social Media: Do Doctors Hate Blogs?
- Dear Bridget Duffy from a Rheumatoid Arthritis Patient
