by Jennifer Roberts
In 1985, when I was in Kindergarten, I was hospitalized for four days. After receiving a support poster from my classmates, a special teddy bear, and lots of finger pricks, I came home with a diagnosis of asthma. From that time forward I carried an inhaler, and I used it 8 times a day. Throughout childhood, my biggest challenge at school was timing attacks so that I could get to my inhaler in the office. If I was at recess, at specials, or in the field, taking these walks felt like an eternity. By the time I got there I was dizzy from lack of oxygen, barely able to move my legs, and struggling to tell the teacher that I needed help. These attacks also happened at home, and forgetting an inhaler, or bringing an empty inhaler, constituted an emergency.
At sixteen I was prescribed Azmacourt. It used an inhaled steroid to reduce the inflammation in my lungs, and it changed the game. For the first time in P.E., I could run-walk a quarter mile without getting out of breath. During most of my day I forgot that I used an inhaler.
In my 20’s a drug came out called Advair. It combines the inhaled steroid of Azmacourt, with a new medicine that relaxes my airways. It completely replaced my rescue inhaler except for emergencies. Advair is not cheap. The retail price for my current version is around $650, and I use one per month. Two years ago my doctors added a medication called Spiriva, with a similar price tag. I use two per month.
Asthma was the first of many health challenges, but I can’t step away from it. Planning for health insurance has been a necessity and a constant struggle. My father developed Leukemia my senior year of college. My mother’s plan covered him, but not me. I was punished at my first job review for taking more than two sick days a year. When I left I spent seven years of my life without any insurance, relying on the Colorado Indigent Care program. I returned to work full time in 2009, but even with my employer’s health plan it was cheaper to buy generic Advair from Canada.
The Affordable Care Act granted me medical care for the first time in 13 years. I am a member of the Cherokee Nation, and as a result I had low premiums, and $0 deductibles. The ACA was implemented right after I was seriously injured and it covered the full cost of several bone surgeries, in addition to covering the full cost of my prescriptions. This helped me keep my home and modest assets.
I lost ACA coverage when I was awarded SSDI. Everyone on SSDI is automatically placed on Medicare, and I was not allowed to have both. Medicare required me to pay back my ACA premium on my taxes, and I retroactively lost cost sharing. With Medicare I was also going to have to pay more than $6,000 for my inhalers. That is about a third of my income. I did not want to go on Medicaid because before my accident I went through the Dave Ramsey financial plan. I did not want to give up my emergency fund because it makes me feel safe and gives me stability.
CCDC helped me apply for the Medicaid Buy-in program. The Medicaid Buy-in was created through the Affordable Care Act for working people with disabilities. It allows participants to have Medicaid, but keep assets like a retirement plan and savings account. One key is that participants have to be paid to work, but there is no hourly minimum. It is similar in cost to my American Indian Health Plan, and is calculated based on my disability income and my employment income. So far I pay $90 a month for my premium, $0 co-pays for visits and $1.25-$3.75 for prescriptions.
Getting onto the Buy-in program was challenging. Coloradans applying for ACA coverage have to apply for Medicaid and be denied to qualify. Even though my case at Connect for Health was closed, it was messing up my Medicaid eligibility because I had been denied recently. CCDC helped me get past this. Once I was approved it was easy to use. I was already on Kaiser with Medicare so I just let them know I had Medicaid too. As soon as my next appointment I did not have to pay a co-pay and I was able to get my prescriptions. Medicaid is supposed to pay for my Medicare Part B premium but they aren’t, and I need to file an appeal. CCDC helps with these. The plan also covers dental at limited locations but I have not tried it.
The Medicaid Buy-in has some limitations. It does not cover seniors over 65. It does not cover people if they cannot work at all. It only covers people with a disability, and doesn’t cover things like the high cost of insulin if Diabetes is your only condition. People who don’t qualify can still lose their assets if they are injured like I was, or get really sick like my father. I am not sure what happens if you have periods where you have to miss a whole month of not working, like when you need surgery. But so far it is a good step. In the meantime I am also working with the Colorado Foundation for Universal Health Care to expand this kind of care for everyone.
**All Blogs reflect the opinions/experiences of people with disabilities or family members of people with disabilities. They do not reflect CCDC’s official position on any portion of Medicaid services.”