Meet Aaron “Garth” Simko of Denver, Colorado. He grew up with Treacher Collins syndrome, a rare congenital disorder that often includes conductive hearing loss, as well as an underdeveloped jawbone and sometimes vision problems. This September, one of his bone conduction hearing aids stopped working and the other one is in bad condition, but to buy new ones, he would have to pay $9,000, which is money he doesn’t have. So Aaron started an Indiegogo campaign and is trying to raise that amount by December 5th.
Despite the limitations he faced from Treacher Collins—including being bullied when he was young because of how he looked—he has still pushed past and done everything he can to live life normally—in fact, he is an avid musician and can often be caught on the streets on Denver’s 16th Street Mall playing his guitar, especially now that he’s trying to spread awareness about his fundraiser to combat high prices of hearing aids. As part of his Indiegogo fundraiser, Aaron is providing “perks” to people who donate—for example, a custom guitar pick for those who donate $15, a custom guitar pick necklace for those who donate $30, and 3 guitar lessons for $150.
We reached out to Aaron to hear about his situation and his fundraiser.
When did you start using hearing aids? Were high prices of hearing aids a problem then?
I started using a hearing aid when I was 6 weeks old! I used a bone conduction hearing aid funded by my grandpa, Andrew Simko. A true blessing because with this device, I was able to develop basic audio communications like a normal child. Treacher Collins syndrome left me with no hearing, a closed left ear canal, and an under-developed right ear. I moved on to traditional hearing aids when I was old enough to understand and accept responsibility. I am lucky I got a mild case of Treacher Collins syndrome and my parents always had access to good health care insurance. I was able to get the surgeries (16 surgeries in 18 years) I needed to lead a normal life.
Traditional hearing aids worked well, but I needed some assistance in school. In 2002, when Dr. Stephen Cass at the University of Colorado Hospital operated on me for the BAHA Compact hearing aids. The difference was phenomenal, I now could hear faint sounds like cats purring or the annoying old refrigerators, and I did not need any assistance in the classrooms for college.
When did you find out you needed your hearing aids replaced, and what role did the high prices of hearing aids play?
I found out I needed to replace both hearing aids in 2011. I needed to upgrade to new devices because Cochlear Corporation is no longer going to service the BAHA Compact. At that time I was denied coverage by my healthcare company and over time, both devices have broken. I was unable to fund new hearing aids on my own. The one hearing aid I am currently using is works but is faulty and the good BAHA Compact stopped working all together this September.
My plan does not cover thehigh prices of hearing aids, or any hearing aids, though it does cover Cochlear Implants—another type of hearing aid I don’t have or require. I inquired about changing my plan and upgrading but I am stuck with the current one. However, there are ways to get some devices covered. At the moment I have one medical office working on my case. I am also writing a letter of appeal for my expensive audiologist appointment bill. Ear Community and H.E.A.R. Project are also two places I am seeking out for help.
If you aren’t able to raise $9,000, what would you have to do to combat the high prices of hearing aids?
I will try again. I am not able to work extra hours at my job but the fundraiser has pushed me to find new ways to make extra money. I hope that I won’t need all of the money either, and I am working to find a organization to forward the funds to other people in need.
Interview edited for clarity and brevity.
To donate to Aaron’s fundraiser, click here.
Read more about high prices of hearing aids.