CGM Reimbursement is very high on my list of priorities. Everything else I about to say will make that seem like it isn’t true. Please believe access is very much at the top of my radar.
Introduction (and my spelling is lousy)
Y’all my not know my background. Here is what matters. I spent two years earning a master in health communication from Boston University specifically to better advocate for people with diabetes. I did well, GPA of 3.94. The missing .06 was all spelling and punctuation. So please forgive my spelling and punctuation. I know it is a short coming.
I believe it will take a long time to get CGM reimbursement via Centers for Medicare & Medicaid Services aka CMS. That suggests that P\part of the goal should be, not to seek in few years, what is needed now, but to speak to what is needed in a few years, when success is possible. That is to say I expect technology will evolve and advocacy goals should anticipate that.
I think there are practical, policy and political issues to consider in an effort.
In my BU classes on heath communication they taught a nemonic device to help focus campaigns. S.M.A.R.T.
- Results Oriented
- Time Constrained
I fear that not thinking things through fully, using those steps or ones like them, is the advocacy equivalent of fire, ready, aim. We have done too much of that in diabetes policy advocacy.
Time - It may be on Mick Jagger’s side but not Advocacy’s
Policy advocacy is a very long term process. Years is fast. In that context then creating expectations of short term success is a mistake. It can create the perception of failure rapidly. For example, leaving people to feel, 'I wrote this letter and nothing changed, it never will.' Then they quit. It is not that the letter wasn’t needed it was the expectation of the result of the letter, may not have been attainable.
Sharing stories and collecting comments back from a congress on CGM may be attainable, letters to the editor in the local papers may be attainable, blog post, internet talk radio shows, etc. All doable.
I think there is a tremendous amount of ground work needed to build a foundation for CGM coverage. The building of that may help the coverage happen before executive of legislative action. There is (finally) broad movement to combining sensor with other devices, aka pumps and maybe smartphones. Since your diabetes may vary, coverage should encompass a variety of means of using sensor.
My understanding is that sensor are not covered because CMS says there is no medical purpose for them. That is CGM is an indication only not a medical necessity. It is indicated to test with a finger stick and it is the finger stick device that has a medical role driving the care decision.
Science that shows a medical value would help, as would labeling for CGM to have a medical purpose. The amount of complexity in that last sentence is not to be underestimated. However hypoglycemia may be avenue to pursue as a medical end CGM can address. Also as sensor accuracy improves and there is a label for CGM to treat blood sugars there will be a medical purpose.
In the current environment advocating for spending is a non starter. Spending call are a political kiss of death. Better to frame the conversation as safety and savings.
Insulin is a very dangerous drug. We cannot possibly say that enough.
Numerous studies show insulin is a leading adverse drug reaction cause of seniors being admitted into the ER in the United States. Seniors are CMS’s population. ER visits are extremely costly. Addressing hypos and preventing ER visits is a way to protect seniors from potentially fatal and costly overdoses of the very dangerous drug insulin. Sensing and predicting hypos is a means of keeping senior safe and out of ER.
Advocacy is about alliances and broad reach. Many of the diabetes groups are 501c3 not for profits. IRS code broadly precludes ‘c3s from taking positions on specific legislation. This is true of many philanthropic foundations too. We should be aware of the limitations and goals of groups in crafting messages.