Hello Friends and Comrades!

Today was Rare Disease Day, February 29th, 2024. In Iowa City, Iowa we celebrated the day with a proclamation from the city government proclaiming today, February 29th as Rare Disease Day in the city.

My Rare Disease Day Speech:

Hello Everyone,

My name is Mika Jayne Covington, my pronouns are she and her, and I live with a rare disease called cystinosis.

Today is Rare Disease Day, the rarest day of the year! Rare Disease Day is dedicated to elevating public understanding of the thousands of rare diseases and calling attention to the unique challenges we face in accessing healthcare.

Cystinosis is a rare disease that damages my cells, causing them to crystallize and die. Cystinosis damages many organ systems including the eyes, kidneys, muscles, liver pancreas, heart, and central nervous system. I’ve already experienced many issues from the disease including kidney failure and unfortunately, I am looking for another kidney transplant.

Not only am I a rare disease patient but I am a trans woman. I cannot separate my being trans from also living with a rare disease. That’s why I am not only here to talk about Rare Disease Day but about human civil rights.

As a trans woman, I’ve fought back against the state, including when I had to take the Iowa Department of Health to court to gain access to gender-affirming surgery. I also was discriminated against in 2012 in Nebraska when I needed a kidney transplant.

If they won’t listen to us, it’s time we make them! Not only do people like I exist but there are so many of us.

Our government continues to fail us by not approving the Speeding Therapy Access Act (STAT Act). On Rare Disease Day we must call on our elected representatives to remember us and we call on congressperson Mariannette Miller-Meeks to co-sponsor several bills including the STAT Act, which would create a rare disease advisory board in the FDA; RARE Act, which would cement the FDA’s interpretation of how to properly award the orphan drug exclusivity established by the Orphan Drug Act; and the Accelerating Kid’s Access to Care Act, which would streamline the process for medical providers to care for patients enrolled in another state’s Medicaid program to enable timely access to necessary care across state lines for children on Medicaid.

Cosponsoring these bills is an important step to signal to us (the rare disease community) that our elected officials understand the need to improve our access to safe and effective treatment.

In Iowa, the rare disease community must demand the legislature and the Republicans support trans and nonbinary people, and protect bodily autonomy. Specifically, I ask Representative Brooke Boden to protect the rare disease community and drop her support for the Pink Triangle (Trans Erasure) bill, which creates a new law defining a person’s gender as their sex assigned at birth, and if a trans person is issued a new birth certificate or driver’s license after gender-affirming care, the new document would show that they are trans (like the Nazis did with their pink triangle) by including the sex assigned at birth. The bill also adds a new definition for the word “equal” that it doesn’t mean “same” or “identical” and even says that “separate accommodations are not inherently unequal.”

That’s why I am here, to speak up and share my story with elected officials such as Representative Boden and ask her to please focus on rare disease needs.