ME Action Colorado and the Colorado Legislature 2021
by Tom Strobel, ME Action Colorado Steering Committee Member
We’ve been busy this March and we’ve gotten quite close to actually accomplishing something in the Colorado Legislature. We are already in line to receive a tribute, sponsored by Rep. Alex Valdez, that would call for taking ME more seriously in Colorado. We almost got that last year but COVID struck and it was sidelined. But this year, we are pursuing a more ambitious goal: to set up a Long COVID/ME Task Force within Colorado State government. We are attempting this with a late bill, to be possibly sponsored by Sen Jacquez Lewis and Reps. Yadira Caraveo, Colin Larson and Shannon Bird. But how did we get here?
The week of March 8-12 was Chronic Illness Awareness Week in the Legislature-an opportunity for the state’s constituents to connect with their legislators and raise awareness with them about living with a chronic disease. We at ME Action Colorado have used that week to persuade legislators and members of both the Department of Health Care Policy and Financing (HCPF) and the Department of Public Health and Environment (CDPHE) that there are a lot of patients with Long COVID that are in the pipeline to be deposited in the state’s health care system that need continuing, competent care and that the state is not prepared for it. Some of these patients will end up with ME or similar post viral syndromes. How do we know this? Because we know that the medical resources for ME are virtually non-existent and the Long COVID patients are facing a similar environment.
We pitched this message at an Appropriations Committee Hearing where we asked for more money to address Long COVID and we’ve talked to several Senators and a number of Representatives in meetings set up by the Chronic Care Collaborative.
Some have enthusiastically embraced the cause, others less so but more often as a result of not being in a Health Committee and no Senators or Representatives have discouraged us from pursuing this legislation that would create a task force to implement education and research in the state for Long COVID and ME. Interestingly, when we talked to the people at HCPF, they were quite supportive of our efforts, though they thought that they were not the agency to spearhead such a task force, thinking instead that it should be in CDPHE. Also, a couple of people from the ME community testified at the Invisible Disabilities Disability ID program hearing to support their bill and introduce the House Transportation committee members to ME.
So we (John Kelty, Anneliese Steel and I) had a meeting with some CDPHE staff on Monday, March 29 and it went well. Well means, in this context, that staff seemed quite receptive to the idea of a task force and even suggested a solid framework with goals for such a task force. Though we got no definitive answer at the meeting we are hopeful that they will formulate a plan shortly to move ahead. THIS IS GREAT AND STAY TUNED! If this progresses, we WILL need YOUR advocacy to help your Senators and Representatives to see the wisdom in this plan. We will keep you informed and notify you when and how you can help.
Legislators respond to their constituents!
