You Might Be Messing With The Wrong Family

If you are new here, I wrote a pretty personal post last week about being defeated when it came to a medication for my child, Jillian who has Cerebral Palsy. If you would like to catch up, you can start with THIS post.

I allowed myself 2 days of pity party. I cried a lot, I listened to music, a lot, and basically stayed in my pajamas, not wanting to deal with the outside world. As a mother, I should be able to kiss my daughter’s boo boos and make them better. In this instance, I’ve failed her. I can’t get the medication that WORKED against her spasticity approved through our insurance company. For 2 days, I let myself be sad. Now? I’m not JUST a mother, I’m a mother on a mission.

We started this fight for Botox injections in March of 2011. After fighting with our insurance company, Manulife Financial, until May of 2011 to actually get this medication approved was taxing on me, my family and those around us.

I placed NUMEROUS calls to our insurance company, providing them with more documentation each time they refused our claim. I was very thankful for such a fabulous team of nurses, doctors and therapists to assist us. It came down to an emergency meeting that would be held in the morning, after already waiting 3 months for approval. I said that the emergency meeting was ridiculous. Especially since I had been fighting for so long. Alas, they didn’t speed it up. Not only did my child have to miss her appointment, another family got screwed over since it was too late to book another child in during Jillian’s appointment time.

Final word? They would NOT cover the injections, unless the venue was changed. We were to have the appointment at the Hospital For Sick Children, within a hypertonia clinic inside the hospital under conscious sedation. For my daughter’s already tight muscles, putting 3 needles in each muscle (total of 12 injections) without any sort of sedation seems barbaric to me. Thankfully, we received a donation from Allergen Canada who manufactures Botox in Canada. Our hope was this medication would work and we could go back to our insurance company and show them proof. Thankfully the medication did work, however now it seems like the battle is totally over.

We had another appointment with Jillian’s doctor and she said she would draft another letter, stating facts that this medication helped. I was dreading the insurance battle, but NEEDED to do this for Jillian. After the letter was completed and I had it in my possession, I called Manulife again. I was fearful, but hopeful. Hopefully someone could help us out here. When I called, I asked to speak directly to a supervisor, apparently that wasn’t acceptable. The rep asked me the reason for my call and if I could provide her with some information before passing my call on. I explained, she placed me on hold and when she came back, she stated that unless we have changed the venue of the injections, they would NOT be covered. It didn’t matter I had a letter of appeal. It didn’t matter that I had PROOF that this medication worked before, it simply DIDN’T MATTER. (her words). She bid me good day and  hung up the phone. Seriously. Good day. Right. When you won’t even LISTEN TO ME. And when I tried to explain that you were taking the quality of life away from my 3 year old, I was told I was being drastic. So, here is what I’d like to say.

Manulife,

After denying necessary Botox injections for my child, I felt defeated, but not any  more. I simply can’t sit back and let you take the livelihood away from MY child. You’re not the ones that have to hear that her legs don’t work anymore. You don’t have to watch her lose independence since her muscles are getting tighter and she no longer has confidence in herself to crawl up and down the stairs.

If this treatment wasn’t completely necessary and has proven it could work, I wouldn’t want it. My little girl deserves a good quality of life, just as any other child. If you had even read the letter, you would see that my daughter experiences pain EVERYDAY when the medication has worn off. MY child that pushes through and tries to walk with a walker and is unable because her muscles are too tight.

If the venue of these injections is a problem, I would urge you to get a total of 12 injections in extremely tight muscles without any sort of sedation. And I would wish you luck.

I will NOT back down this easily. My daughter and my family deserve this. And to quote the letter you would not read- “We are hopeful you will reconsider the coverage of Botox (Botulinum Toxin A) for Jillian as it has been shown  to be efficacious for this young girl allowing her to walk, sit and play with her peers”

I urge you to reconsider. This doesn’t just affect MY child, but any other children with Cerebral Palsy that require Botox injections under any of your insurance plans. Also? Just so we are not just another faceless family, you should watch this slideshow.

Yours,

Cheryl Peters