Related Posts
The American College of Rheumatology (ACR) has created an organization called Simple Tasks in order to help us live well. Last month, they released the 2018 Rheumatic Disease Report Card. As Chair of the Board of the Sjogren’s Foundation, I’m fairly knowledgable about rheumatic diseases and the status of healthcare, but even I was shocked at how poorly US States faired in this report.
“Living Well” is the battle cry of chronically ill patients, as in I am Living Well with Sjogren’s Disease (or I want to Live Well with Sjogren’s). Living well is our greatest hope and our goal. It is also the directive from the non-ill people in our lives: our family, our friends, our disease associations and our doctors. After reviewing this report, I really have to ask:
How the hell are we supposed to live well when even the ACR gives America an overall C grade on disease care and an F on affordability? Subpar care cannot support a well-lived life!
No wonder we struggle!
2018 Rheumatic Disease Report Card Highlights
Approximately one in four American adults live with a diagnosed rheumatic disease. This report highlights that the number could be closer to one in three adults. Children are not included in that figure. According to the recent federal estimates, the current cost for medical care per year for patients with rheumatic diseases is $140 billion; this surpasses the annual economic costs of cancer care in the US. That doesn’t sound like we are living all that well in this country!
I believe everyone should read this report , however, I will highlight the key points in this article. I have also recreated summary charts to show the overall impact of the grades. You will need to read the report to see your specific state’s grades.
State-by-State Rheumatic Disease Report Card
The featured image of this article shows the overall grade each state received. It is worthwhile to review the methodology and weighting used to generate the grade per category and then for the overall grade. Understanding the specifics and assumptions of the grading will help you determine if you would alter your state’s grade. The key areas of analysis were:
- Access to Rheumatic Care
- Affordability of Care and Medications
- The Lifestyle and Activities/Programs Available
Only one state, Maryland, received an A. The featured map image correlates to this chart.
Access to Rheumatic Disease Care
Access to rheumatic care includes access to rheumatologists and the patient-to-doctor ratio, access and participation in insurance, and a few other factors. The number of states per grade are pictured here:
Affordability of Rheumatic Disease Care
This one is obvious. And you already know that our care is not affordable. I personally don’t agree that any state can receive a passing “affordability” grade, but take a look and see how your state fares. The number of states per grade are pictured here:
Activity/Lifestyle Available in the State
This category looks at the overall state lifestyle and activity levels of the state’s population. If you have a healthier lifestyle than is assessed for your state, you are doing better than your state’s grade. However, the opposite is also true. This category also reviewed the number of arthritis-approved programs and pools available in the state.
Longterm Outlook on Rheumatic Disease Care
For many patients, it is a challenge to find a good rheumatologist. One first has to determine if a “rheumy” is well-versed in their particular disease and then determine if they can build a rapport and communicate satisfactorily. For patients who do not live near a major city, it is particularly difficult. The longterm outlook for solving this problem is quite grim!
According to David Daikh, MD, PhD and current President of ACR:
We are at a critical juncture in rheumatology care. The rheumatology workforce is not growing fast enough to keep up with demand and too many of our patients struggle to access and afford the breakthrough therapies they need to manage pain and avoid long-term disability.
According to ACRs 2015 Rheumatology Workforce Study, demand for rheumatologists is far outpacing the supply. The study projects a decline in the specialty due to current rheumies reaching retirement age, just as the US population is rapidly aging. And with age comes the onset of many rheumatic diseases as well as advancing symptoms from disease. What we see from this study is that an additional 4,729 rheumatologists are needed by the year 2030 to meet patient demand. The chance of patients living well in the future is less than today!
How Can we Live Well with our Rheumatic Disease
It does appear that additional help may not be coming from our medical and healthcare options. And although I am very excited about all the new research and clinical trials that are focusing on autoimmune disease, it is still an unknown if I will be able to afford the therapy, when it finally arrives. If you’ve read my blog before, you know that I tried Rituxan last year and did not receive huge benefit. This was almost a relief because the therapy, if it had worked, would have been $32,000 per year out of pocket (that’s after insurance and some financial support from Genentech). That amount is not attainable for me, and I suspect for most.
What can we, as patients, do about this? We need to take our well-being into our own hands. We need to manage our stress, our eating habits, and daily exercise to the best of our ability. And by “best of our ability” I mean be model patients in these areas. Sometimes this can be very challenging, especially when exhaustion and pain are high, but it is our best chance to live well.
If this information has saddened you instead of emboldened you, you may want to consider adding a meditation, yoga, or singing practice to your day. This will calm your mind and your system so you can determine how you’d like to take future action to live well with your disease. Take a look at this post for some ideas.
I believe insurance companies need to rethink coverage of Rituxan. When they did cover it, I got it. I thought it helped but my daughter was sure it did. After about four years, I went into remission. No joint pain, greatly reduced fatigue, better CNS function! You can’t reverse the dryness but that was the least of my problems.
I agree! Rituxan coverage, and the percent covered, differs by state and by insurance company. I hope there are significant changes in the future!
So thankful for Ssf and need to be ambassador
Hi Vicki,
Please do contact the SSF to talk with them about becoming an Awareness Ambassador or Patient Volunteer Support!
I really appreciate what Janet Church and SSF are doing for Sjogren’s patients. But I would like to know if efforts are being made in the nearest future to provide some helpful support for patients in the developing countries of Africa.
Hello Janet. Nice to speak with another “Janet”! I am not up to speed on what is happening with Sjogren’s support in the countries in Africa. I do know that the Sjogrens Foundation here in the US is on top of what medical providers can do to support patients. If you download the clinical Practice guidelines and bring them to your medical providers, then I am hopeful they will be interested in learning more about current practices for Sjogrens patients. Unfortunately, Sjogren’s is misunderstood everywhere (including most of the US). So it will be some time before treatment and support is consistent and accurate in all countries. If you can find a Dr willing to read up on Sjogren’s and be a partner to learning best practices with you, then I think that will be your best option for good care. I am hopeful that you have someone interested in reading the materials from the Sjogrens Foundation and even sign up the Sjogren’s Quarterly, which is the medical provider newsletter from the Foundation. Good luck!
Even though this report is from 2018, I have a feeling that little has changed. Access to rheumatologists is still less than ideal. And, access MUST include adequate care. These are two separate issues. For those of us living in less densely populated areas, this is a challenge.
You are spot on with insisting on learning what your own self needs. We all need to read all we can and learn about this disorder, and insist that those who provide care to us listen to us. We have to be our own advocates. So, eat better, got more sleep and try to exercise regularly are the basics.
Thanks for a great site.
Mariangela