ACT1 is doing a campaign to help those who are underinsured and those who are without any insurance to procure necessary test strips. The petition on our website is addressed to Roche Pharmaceuticals, asking them to extend their Patient Assistance Program. It is an awesome cause, as I know, since I was without insurance myself for almost 8 years.
I was diagnosed 1 week after turning 21. Medicaid covered me up until I my 21st birthday as long as I was a full time student. I had been getting really sick by the beginning of the Spring semester and I missed so many classes I was dropped. All I could think of as I lay in intensive care was “How the hell am I going to afford this hospital bill.” It had not yet dawned on me just how expensive life with the disease was going to be.
I applied for emergency Medicaid and was able to dodge the bullet that was the hospital bill. I was also able to get test strips, needles and insulin. Yay! Then I had to get a new job. My Mom was not healthy and I had two young siblings at home. So I kept the nanny gig I had and went to work at A&S a sales clerk.
Holy Moly! Racing after three kids when you are just learning how to take care of yourself, with your newly diagnosed chronic illness, not easy. I was low all the time. I truly thought they made a mistake, I couldn‘t be a diabetic. No one explained the Honeymoon phase to me.
I struggled. I only had enough test strips to test 4 times a day. So if I felt hypo or hyper I was using up my allotment of strips. Couldn’t do that. So I began guessing. Wow when I think about the damage I was doing to my body, straight out of the gate, I feel blessed I am still around to talk about it.
Now, because I had a nanny job I couldn’t work at A&S full time. I didn’t know that I was risking my Medicaid. Within 1 year I was dropped and completely uninsured. Up until then all my medical bills were covered. I had no idea what I was up against. I learned quickly though.
As time passed I became more educated about Diabetes. I realized that I couldn’t guess my numbers. Diabetes was serious business. I also learned how expensive test strips were, how high the price of insulin and needles. I couldn’t help my Mom and get my supplies on what I was making. So I got a job waiting tables and quit A&S. How hard could waitressing be? The answer to that question could be a blog in and of itself.
Waiting tables was fun and the money was good. I was able to help my Mom a little more but I still could barely afford necessary supplies. Eventually I began guessing again and of course I could not afford to see my endo very often, even if she was with the clinic.
The kids I watched were all old enough to go to school now, so that job was over. I took crazy job after crazy job and worked at the restaurant as often as possible. The price of supplies went up and so did the cost of clinic visits. Now I had choose between buying supplies or seeing doctors.
I went to Pastry Arts School and then worked crazy hours in restaurants without insurance for years. My family gave me test strips and insulin for Christmas and birthdays. A box of 25 test strips was like receiving a gold brick.
One day I went to pick up my needles at the pharmacy and was told the clinic couldn’t call in a prescription till I went back to see an endo. Well that was not possible. So I used the 1 bag of needles I had left (10 needles), for the next year. Luckily insulin and test strips could be bought over the counter.
Talk about bruising. My stomach looked like a Rorschach test. I was not testing nearly enough as I should be. I didn’t see a doctor for almost 5 years. So I was still using NPH and Novolin long after I shouldn’t have been. I went years without an A1c test.
Over the years I worked full time at 3 separate restaurants. I couldn‘t get medical insurance in any of them, even working 40-60 hours a week. One did not offer insurance (a situation for many restaurant workers), the other two offered me insurance but I would be hit with a preexisting condition. I couldn’t afford to pay for insurance that wouldn’t allow me to see any doctors or get any meds or supplies connected to my Diabetes for a year and still pay for the supplies on top of that.
I did eventually get insurance at a restaurant with an owner who heard about my situation and got my preexisting condition waived. Unfortunately, I lost that job after two years because of Diabetes complications. My boyfriend paid for my COBRA, then he was able to get me on his insurance. I won’t say I’m not lucky this was possible but what we pay for our insurance to cover all my meds, to cover all my complications, is outrageous.
All the years of guessing and working through highs and lows I didn’t know I was having really did take a toll on my health. I am only 38, I have had Diabetes for 17 years. I did my best but without proper care it wasn’t good enough. I am now on disability because of D Complications. If you think that’s the answer to my problems, you are very wrong. To get coverage that will cover all my medications, I would have to pay more than they give me for disability.
I am the perfect example that being able to test your sugar is vital to your health. Please, please, sign our petition. It won’t cost you a dime. Yet your signature might just be worth a life.
