#MEAction has closely analyzed the CMS rules and found that they do not reflect the realities of living with an infection-associated chronic condition or illness (IACCIs) like ME and Long COVID—implementing these rules as currently written will be very harmful for our communities.
While the agency was mandated by Congress to create rules for how states will implement work requirements that were passed in OBBBA, the
last-minute changes from the administration has made these rules even more harmful to chronic illness communities like ours. CMS’s overly narrow interpretation of medical frailty was so significant that
24 states are now suing the agency.
Our public comment doesn’t pull any punches either. We made clear that the agency’s "Failure to take into consideration the specific medical needs and challenges to accessing care of over 20 million Americans affected by IACCIs... will result in worsening health outcomes for patients, increased downstream Medicaid costs to tax payers, and it will inhibit the stated policy goal of furthering community engagement."
In a public comment document that spans over 13 pages we lay out a detailed case showing what those with IACCI expertise across government agencies have said about these conditions that CMS has completely ignored when defining medical frailty and serious and complex medical conditions.
In our comment we write, “
‘But you don’t look sick’ are the words every patient with an IACCI dreads hearing from a healthcare provider uninformed about the proper clinical management of IACCI symptoms. This [CMS rule] could result in IACCI stigma being weaponized against patients, except instead of this stigma resulting in a delay or denial of IACCI-informed care, the individual will
risk having their entire healthcare coverage terminated.”
Simply put, if doctors repeatedly struggle to effectively diagnose and treat conditions like ME and Long COVID how are States going to reliably verify people with these conditions are too sick to work?
In our public comment we go into detail about the diagnostic criteria and required symptoms of ME/CFS as outlined in the 2015 Institute of Medicine report and adopted by the Centers for Disease Control and Prevention. The only accurate way to understand a diagnosis of ME/CFS is to accept it as a clinical judgement that an individual is medically frail and should not be required to comply with work requirements that may make their serious or complex medical condition worse.
CMS’ new Medicaid work rules are an
attack on our right to practice pacing and avoid PEM:
“There is no medically safe way to withhold from an individual with ME/CFS the ability to limit their activity for symptom management purposes".
We insist that the starting point for any CMS rule needs to be listening to people with IACCIs themselves who are the ones who best know the extent of their medical frailty. Before CMS drowns people with ME and Long COVID in bureaucratic red tape it needs to acknowledge that improving the process for verifying exemptions from work requirements will only be possible by making
real improvements to care for these medically frail individuals.
