My telehealth reality and MS advocacy in real time

Everyone uses the bathroom.

But for people like Dan and me who are living with Multiple Sclerosis, bladder issues can become some of the largest problems we deal with. From urgency to incontinence and trouble emptying, this basic bodily function presents numerous reasons for to seek the treatment of a urologist.

Once you find the right urologist – a physician who specializes in treating conditions of the urinary system – it’s important to have regular appointments to ensure everything is “going” properly.

I had such a check-in with my urologist, Dr. Karla Witzke, last week. However, because of COVID, this was a different kind of an appointment. I met with her virtually, as in through voice and video on my smartphone.

It was such a blessing.

This saved so much time for me to not have to worry about getting into my van, making the trip to the health park, sitting in the waiting room, getting my vitals checked, seeing Dr. Witzke, and then driving back home … all while paying attention to the aforementioned bladder issues that prompted the appointment to begin with.

Now, imagine if I didn’t have access to the technology and services that ensure this kind of visit with my healthcare provider. What would I do?

This was such a well-timed virtual meeting because just the day before, “Telehealth and MS” was one of two issues that Dan and I and our fellow MS activist Helen Myers discussed with Edward Kim, a legislative aide for our U.S. Congressman John Moolenaar.

This was the third and final one-on-one meeting with our members of Congress to encourage action to support the issues that were addressed in the 2021 National Multiple Sclerosis Society Public Policy Conference. We, along with MS activists Ruth Linnemann and Dean Munger, previously had met with Amy Brown, a legislative aide for Senator Debbie Stabenow, and Darian Clay-Burrell, a legislative aide for Senator Gary Peters.

Here is a breakdown of the two issues:

Telehealth and MS

We requested our legislators to support:

• Telehealth Modernization Act (S.368/H.R. 1332)

• Protecting Access to Post-Covid-19 Telehealth Act of 2021 (H.R. 366)

These actions are important because Congress must ensure telehealth access beyond the COVID-19 Pandemic. These bills reduce barriers to continue seeing the benefits of telehealth.

MS Research Program at the Department of Defense

We requested our legislators to:

• Fund the MSRP at $20 million for fiscal year 2022

Congress established the MSRP in fiscal year (FY) 2009 and it is the only federal funding stream specifically for MS research. From FY09-FY19 the MSRP funded 111 awards, 98 projects, 4 clinical trials and 3 patents.

It’s always empowering when you use your voice to advocate for yourself and on behalf of others who aren’t able to share their voices. What makes activism even more important for Dan and me is that it is one other way we can maintain an upper hand on MS.

Our advocacy work really hit home for us this year because we essentially experienced the realities for which we were advocating in real time: a virtual visit with our Congressman’s aide on Monday, followed by a telehealth visit with my urologist the very next day.

Sharing our stories and experiences with our elected officials demonstrates how such issues are impacting their constituents. We are encouraging you to take some time to consider joining us as MS activists. Learn more on the NMSS activism website.

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