Hello and welcome to another week at Humbly Courageous. I’m glad you are here!
I recently traveled to Washington, D.C. to participate in my second Hill Day with The Muscular Dystrophy Association. It was an easy “yes” when asked to go for a second time, as an advocate for MDA.
The first time I went to D.C. to advocate, we were fighting for improvements in accessibility and awareness for airline travel for disabled travelers. All too commonly, those with disabilities don’t travel because they are terrified their wheelchair (aka their legs) will be damaged and unusable when they reach their destination. Also, aircrafts need to be updated and made to be more accessible, so restrooms are accessible for all. Ultimately, the hope is wheelchair users can stay in their chair to travel, so no bodily injuries happen when transferring and to avoid damage to a mishandled wheelchair stored below the aircraft. There is some progress being made in the airline industry. Still a long way to go, but since my first time advocating for this, I’ve seen some movement in the right direction. Our voices were definitely heard.
This time around, there were 3 “asks” that we would be presenting to our Senators and House Representatives ( or their aides). It was a much more involved conversation, and we trained for a full day on these three “asks” before heading to Capitol Hill the next day.
It was a great deal of somewhat complicated information. Luckily, we went in groups with our different states. There were nearly 100 advocates this time around representing the different states. In our Indiana group, there were 5 of us, so we all took turns sharing our stories and presenting our asks.
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| Our amazing group of advocates |
We were fighting for issues such as increasing the asset limit for those who receive SSI. It has not been increased since 1989! That limit continues to unnecessarily force millions of disabled people into poverty. By raising the asset limit (at no additional cost to the government) it is estimated that could lift 3 million people above the poverty line. The limit as it stands now, keeps people from being able to save for emergencies, the future or retirement. Also, many have to turn down raises at work because of this limit. Can you imagine having to do that? We need change, and soon!
Another thing we were fighting for was Accelerating Kids' Access to Care Act. Currently, for children on Medicaid, each time they have to cross state lines for medical care, their out-of-state healthcare provider has to enroll or reenroll in the child's home Medicaid program. Changing this would streamline the process for children with complex medical needs to access care through Medicaid across state lines, and eliminate the wait to receive much needed care. When living with a rare disease, like we do, it’s very common to have to travel to a different state to receive care from a doctor that specializes in our certain diseases. As of yesterday, this bill has passed through the House of Representatives and is moving on to the Senate vote. We are hopeful!
Finally, we were advocating to reauthorize the rare pediatric disease priority review voucher, so that kids can continue to receive and try new treatments . It incentivizes drug companies to continue to develop drugs for rare pediatric disease. It allows them a way to speed up the FDA review of a drug from 12 months to 6 months. Time is of the essence when children need these life saving/changing medications. Before this program, there were only 3 drugs for rare pediatric diseases, now there are 53. We need them to continue to support this program. Genetic medicine is a new and exciting possibility for those of us living with rare genetic diseases. There is hope that someday, we will have treatments and cures for the many affected.
It would be easy to not go and do this advocating. These are long, grueling days for those of us with disabilities, as well as those who went that were not disabled but fighting alongside of us. Also, it can be very intimidating speaking to these different offices in D.C. in a “language” we aren’t used to speaking in. Practicing helps calm those nerves!
We can’t assume people know what is needed. In most of the meetings there was at least one piece of legislation that they were not that familiar with. Describing to them, face to face, how this is affecting their fellow human beings on a regular basis can be very eye opening to them. The true stories really drove this home, and being there in person is so impactful.
When people take time to actually listen to us, it restores our dignity, and helps us to feel like we do matter. What you have to say, matters to someone.
It takes humble courage to speak to the people in these positions. It was just amazing to come together with a group of people who were very similar to me. It’s rare to see that many of us all together. This trip definitely filled my heart with joy and renewed my hope. I hope that the next time, if I’m invited to go again, I am able to say “YES!” 💚
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