#MEAction Colorado Works With Governor’s Office to Create A New Senior Policy Advisor Role on Long COVID and Post Viral Infection Planning–Leading to Statewide Report on Long COVID

#MEAction Colorado’s first legislative effort in Colorado began with an ME/CFS day declaration in the Colorado Legislature on February 25, 2020. Representative Alex Valdez read into the legislative record a proclamation about the presence of and deleterious effects of ME in Colorado. This effort was relatively easy to accomplish and consisted of finding a representative willing to do it. One of our #MEAction CO members lived in his district and Valdez responded by gladly doing it for us. Our first success. 

With this positive momentum begun, we began discussing within the organization what we could do next. Those discussions saw wider exposure in our #MEAction Colorado newsletter and one of our members, who was deeply involved in legislative work in the Colorado Legislature, read about those discussions and proposed the idea of a bill that would create a state task force to establish health care policies, create continuing education for health care professionals and pursue research money for the study of Long COVID.

Inspired by this, in 2021 we found legislative sponsors that proposed a bill that we had formulated to address shortcomings in the state’s response to Long COVID through a task force. Underlying our attention to Long COVID was our conviction that any help to the Long COVID community would quickly extend to those with other post infectious diseases, such as ME/CFS. A state senator and two state representatives sponsored the bill, however, 2021 was not a productive year for the Colorado legislature. A big backlog of bills prevented our task force bill from seeing daylight before the gavel struck to end the 2021 session.

In 2022, we again attempted to introduce legislation. This time we attempted to get a full time Long COVID Coordinator position established. When we had sought to get advice and support for this effort, we had spoken to members of the Governor’s office. They were aware of our efforts and encouraged us to pursue the bill. 

Very importantly, the Governor’s Chief of Staff was receptive in part because her husband has a chronic illness. This underscores the importance of finding allies and this really moved the needle. We convinced one powerful person who made it their mission.

Like the previous year, our bill was never introduced. However, our advocacy with the governor’s Chief of Staff proved fruitful when they lobbied to include the position in a complimentary bill that was already introduced. That bill passed. 

This bill provided funding for a full-time employee focused on Long COVID and other Post Viral Illnesses in the Office of Saving People Money on Healthcare. The official title of the position is Senior Policy Advisor Role on Long COVID and Post Viral Infection Planning and here is the job description for this position. It took about 6-8 months before Dr Mirwais Baheej was hired. Dr Baheej has a compelling personal story.

Once Dr. Baheej was hired, a part of his job was to create a report that could be used as a central document to give a real time status report on Long COVID in Colorado. The report’s goal was to detail the numbers affected with Long COVID, highlight the state’s needs in regards to helping them, and the demographics and inequities of those with Long COVID. The report was released prior to the opening of the legislative session.

To ensure the report was representative of those living with post-viral illnesses, Dr. Baheej began interviewing groups willing to talk to him about their knowledge and experience to get up to speed. Since #MEAction Colorado had been instrumental in helping get the role proposed, we were one of the first groups to receive a request to meet.

In the meeting with Dr. Baheej were members of #MEAction Colorado, a member of Body Politic, and a Senior Policy Advisor to the Governor’s office. This first meeting was mainly a time for the multiple parties to introduce themselves and provide information about their work and their stories. Dr Baheej did ask those of us on the call to supply him with 1-2 paragraph testimonials about our loved ones or others’ experience with Long COVID and ME. These stories would be included in the report, and #MEAction is thrilled to announce that they were part of the final report. Overall the meeting was cordial and we at #MEAction Colorado left feeling  we had made an ally in our state government. Dr Baheej gave us the feeling that he valued our input and that he looked forward to working with us in the future.

When it comes to the content of the report, the main focus was on Long COVID. Nonetheless, #MEAction Colorado’s activism led to ME showing up in the report a few times. In section 1.6 there are significant references to the similarity between Long COVID and ME and cite the interest among chronic illness sufferers in the response to Long COVID. There are testimonials from people with ME and Long COVID patients and mention of the frequent dismissal and hostility that people with ME have received from the healthcare profession.

Continuing on, in section 6.1, there is a reference to the interest of others with post viral illnesses to making sure that Colorado is aware of the broad outlines of the problems that Long COVID presents. Plus, in section 6.7, there is a section on the similarities of Long COVID with other post viral illnesses, specifically citing ME/CFS. The report says that Long COVID must be understood in the context of other post viral diseases and that “Proposals to address the impacts of Long COVID may have implications for others impacted by post viral diseases”. #MEAction Colorado finds this sentence to be a quite powerful statement.

#MEAction Colorado recognizes that working to get a position in Colorado state government focused on Long COVID and other post-viral illness, and this recently released report, are all steps in the right direction. We know it will continue to be a very long road ahead to address the needs and the care so deserved by those living with ME and Long COVID in Colorado.

The next step in our advocacy work is another meeting with Dr. Baheej at the end of this month. We look forward to continuing to build upon this relationship and this momentum. Advocacy work is hard and there are many set-backs and there is always room for improvement, but these  actions by our state on ME and Long COVID are WINS worth celebrating. We are excited to see what more we can accomplish!


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