Thank you for drawing attention to this issue, for your fictional but realistic example of how this could play out for patients and for your practical call to action. We look forward to working alongside you to understand the challenges and to influence change where we can.
Thank you so very much for responding and sharing your thoughts!
We are already seeing delays in treatments on the ground because of the chaotic implementation of these codes. I look forward to working with you to understand what is happening nationally with this. Thank you for your work!
Excellent post. These codes are geared to benefit the payers, not the patients, while HCPs are working to benefit their patients. These goals are at odds and the payers seem to hold all the cards. This needs to change.
Great and very insightful and revealing article about treating and managing complex diseases like MS. System sometimes intentionally and sometimes unintentionally doesn’t recognize these details and allow good doctors to treat effectively. Patients don’t always fall into perfect algorithm charts, especially with diseases like MS
Thank you for your efforts on behalf of people like me living with MS. As we learn more about the biology and pathophysiology of MS, develop biomarkers for diagnosis and monitoring, and leverage large language models to identify different disease states within the MS continuum, it’s incredibly frustrating to see regulatory agencies moving backward in reclassification.
Thanks, Kristine, for your thoughtful comment. I agree that biomarkers and AI have a role to play in how we describe MS in the future. Frustrated that these new codes set us back but there is much work to do to develop better course descriptors based on biology and individual risk.
I am not too worried for folks who have a typical relapsing remitting course as the relapsing remitting code is pretty straight forward. But I am concerned for patients for whom non-active progressive codes are selected (those who have progression but no relapses), as in the case in the article. People may be non-active at a point in time but be at risk for relapse, thus needing a DMT.
It is important to remember that our current DMT are only indicated indicated RRMS and active SPMS per FDA, with the exception of ocrelizumab which is also indicated in PPMS. My fear is that insurers are going to stick to these strict indications, which do not reflect exactly what we do in practice. So if you are let's say PPMS on Kesimpta (which acts similarly to Ocrevus but is not officially approved for PPMS), then you may be denied coverage for your medication. I can't be sure that this will happen in all cases or that insurance will deny coverage for medications people are already taking routinely, but I think it is worth watching, and definitely having a conversation with your doctor.
I am also unsure what insurers will do with the "MS, unspecified" code. They may decide to flag those and ask clinicians for more information, which could also delay treatments.
Thank you for drawing attention to this issue, for your fictional but realistic example of how this could play out for patients and for your practical call to action. We look forward to working alongside you to understand the challenges and to influence change where we can.
Julie,
Thank you so very much for responding and sharing your thoughts!
We are already seeing delays in treatments on the ground because of the chaotic implementation of these codes. I look forward to working with you to understand what is happening nationally with this. Thank you for your work!
Thank you, Julie! Please let me know how I can help!
Excellent post. These codes are geared to benefit the payers, not the patients, while HCPs are working to benefit their patients. These goals are at odds and the payers seem to hold all the cards. This needs to change.
So well explained, Marc!!
Great and very insightful and revealing article about treating and managing complex diseases like MS. System sometimes intentionally and sometimes unintentionally doesn’t recognize these details and allow good doctors to treat effectively. Patients don’t always fall into perfect algorithm charts, especially with diseases like MS
Thank you for your efforts on behalf of people like me living with MS. As we learn more about the biology and pathophysiology of MS, develop biomarkers for diagnosis and monitoring, and leverage large language models to identify different disease states within the MS continuum, it’s incredibly frustrating to see regulatory agencies moving backward in reclassification.
Thanks, Kristine, for your thoughtful comment. I agree that biomarkers and AI have a role to play in how we describe MS in the future. Frustrated that these new codes set us back but there is much work to do to develop better course descriptors based on biology and individual risk.
Thanks, Sam, for your comments.
I am not too worried for folks who have a typical relapsing remitting course as the relapsing remitting code is pretty straight forward. But I am concerned for patients for whom non-active progressive codes are selected (those who have progression but no relapses), as in the case in the article. People may be non-active at a point in time but be at risk for relapse, thus needing a DMT.
It is important to remember that our current DMT are only indicated indicated RRMS and active SPMS per FDA, with the exception of ocrelizumab which is also indicated in PPMS. My fear is that insurers are going to stick to these strict indications, which do not reflect exactly what we do in practice. So if you are let's say PPMS on Kesimpta (which acts similarly to Ocrevus but is not officially approved for PPMS), then you may be denied coverage for your medication. I can't be sure that this will happen in all cases or that insurance will deny coverage for medications people are already taking routinely, but I think it is worth watching, and definitely having a conversation with your doctor.
I am also unsure what insurers will do with the "MS, unspecified" code. They may decide to flag those and ask clinicians for more information, which could also delay treatments.