Day #1 ACTH

This morning we woke up thinking we would start on ACTH. However, every time the nurse came in we would ask, "Did the insurance approve the medicine yet?" and hour after hour she would inform us, "Not yet." Hours seem like weeks when dealing with IS.

Around noon we started to lose our patience and confidence that everyone involved (doctors, pharmacy, insurance company etc.) was working together to get this medicine for Marek. Ryan and I started making phone calls, first to our drug representative at Acthar, then to the insurance companies, the benefits office at Ryan's work and doctors here at Children's. What we discovered is that A).  insurance companies can be cruel and B). the system doesn't run as smoothly as it should. As my mom kept saying all day, "the right hand isn't talking to the left hand." 

After being transferred here and there we were told that all the insurance company was missing was a letter from the doctor saying that Marek needs this medicine. The logic behind that blows my mind, why would we be giving our son the most powerful steroid out there that could possibly kill him if he didn't need it? So we tracked down our doctor who wrote the letter and faxed it. We waited an hour and called the insurance company to confirm that they received the letter. Surprise, surprise they didn't. As I was talking to them they told me (at 2:30 pm) that is was too late to complete the paperwork today even if they received the letter. As they told me this I was watching Marek have a seizure and counting his spasms. I couldn't believe that insurance companies call it quits at 2:30 when they are open until 4:30. That would be like me quitting teaching the last two hours of my day, no big deal, no one is negatively effected by that right? I couldn't hold it together anymore, I just broke down and cried on the phone. I didn't understand why this was happening to my son. Maybe my emotional breakdown was enough to remind the person on the other end that they are dealing with real people's lives and them dragging their feet could possibly be costing my son his future. After that they worked extremely hard on talking to the correct individuals to get the first vial of medicine approved.

Later on they explained to us why the process is so complicated. They were unsure as to who was going to pick up the coverage on the ACTH (with a grand total of $145,000), the medical insurance or the pharmaceutical insurance. They tried to tell us that they were working on saving us money. Depending on which company picked up the coverage it would cost us either $145 or $4,000 a month. We explained to them that we didn't care how much it would cost us we just wanted the medicine NOW. We got approved for the first vial around 5:00 p.m. 

It was a small celebration...YES we have our medicine, but now back to worrying about side effects and the effectiveness of this medicine.

Marek had his first dose of ACTH (20 units) at 7:00 p.m. I gave him his first shot as we all said a silent prayer asking for God's healing power. It was emotional giving Marek his first shot not only because I was sticking my child with a needle but because it became so real that the drug is finally in his system and how desperate we are for it to heal him. 

Please continue praying for our little guy. We have taken the big risk, now we want the big reward.