E-mails to Blue Butterfly #1

I received an e-mail from Brenda telling me about her escapades with Thyrogen and the reluctant insurance companies. I thought that her e-mail would be so helpful for ThyCa patients and survivors. She said yes!!! Read how my girl wrangled and maneuvered to get Thyrogen covered by her insurance companies. Had I known these steps or tried these steps, it might have saved me some valuable wait times so that I could have got Thyrogen covered in February 2011 instead of finding out that it wasn't in April when it was totally "out of stock" in Canada. As a result, my Endo #1 and I decided to "go hypo" and complete my Radioactive Iodine Ablation in April 2011

When I wrote in my post Polkaroo? Was Here? Didn't Miss Him This Time., 'What about the thyroid cancer patients who have to wait or are still waiting?', people like Brenda who are now "in the midst" of the uncertain wait time for this medication. (First, Genzyme Canada, the company that makes Thyrogen, said May, then June, then July, now it is uncertain throughout the rest of 2011 and 2012.) Bummer! I totally feel for Brenda. She represents the thousands of Thy'Ca patients who can't access Thyrogen and the very few who did manage to get the cost covered by insurance.

Thank you Brenda for sending me this e-mail. (I love e-mails!!!! I always get a surprise.) I loved this one so much that I decided to post it. You too can tell me your Butterfly Tale, about your waltz into Thyrogen-land, helpful tips, or just to say "hi". Click here to contact Blue Butterfly.

Read on here to learn about Brenda's story.

My name is Brenda and I live in southern Ontario. I was diagnosed with thyroid cancer in March when the smaller of my two nodules showed suspicion for papillary carcinoma from testing by needle biopsy. The surgeon said definitively that it was cancer and I had surgery to remove my thyroid in the end of June.

I will have the Radioactive Iodine treatment in September. I was very hopeful that I would be able to secure thyrogen for the treatment but I was fourth on my endocrinoligist's treatment list and she was only able to secure for the first two people when thyrogen became available for that one day in mid July. As the cancer was also in some of the lymphnodes in my neck (which were removed during the surgery), my endocrinologist doesn't recommend waiting past mid September for the thyrogen to come available. I understand this will be a miracle of sorts if it does become available anytime the rest of this year. I am on a waiting list but there isn't much hope given Genzyme has basically said that shortages will continue until 2012.

As a result I will be preparing for the treatment by going off my thyroid medication three weeks before the RAI treatment. I am quite upset about having to go 'hypo'. Besides putting my mind and body through what I have heard is pretty hellish, I will also miss several weeks of work which will have a financial impact. Fortunately I do have a very supportive employer. I find it very frustrating that thyrogen is not available as it would make such a difference in my life and that of the many others currently off thyroid meds to prepare for the RAI treatment.

I would like to share my experiences in regards to my insurance company, I work in Human Resources and I am very familiar with my benefit plan. Prior to contacting the insurance company I reviewed the plan and did not see any exclusions on drugs such as thyrogen. I then contacted the customer service line. The agent told me that 'thyrogen is not covered'. I insisted that there were not exclusions such as this on my plan. The agent then said that I had to have my doctor fill out a drug exception form to be considered for coverage. I went through this process but did not hear anything back from the insurance company.

In the meantime, I had my colleague in HR, (who is our benefits administrator) contact the customer service specialist who she deals with at our insurance company. She was immediately told that the drug thyrogen was covered and that there wasn't even a requirement for the drug exception form to be completed. I too spoke to our company's insurance customer service specialist who re-confirmed that it is covered. The exception drug form was used a few years ago for thyrogen but for the past couple of years there has been no restrictions on the coverage of thyrogen. It is commonly covered by insurance companies in Ontario. Even the cost of $1600 for the drug is not an issue for coverage. Our specialist could not explain why the general customer service line would have told me incorrect information. He thought perhaps it was a training issue.

The story does not end there... Part of the process to register with Genzyme for the thyrogen is for a rep from the Thyrogen Support Program to contact you and to have a three-way phone conversation with you and your insurance carrier to confirm the coverage. Even though I knew that the thyrogen was not going to be available I still went through this process. When the rep from Genzyme and I called our insurance company, the customer service agent told us that 'thyrogen was not covered by my plan'. I had to argue with her for quite a while to get her to double check this information as it was incorrect. She finally came back and said that thyrogen was covered and that she had made a mistake in entering my plan number. This I know was a lie as she had verified my plan number and information at the beginning of the phone call.

Both the Genzyme Rep and myself were stunned by receiving the incorrect information from customer service rep. The rep had been so insistent that it was not covered and I had to really push her to go to a supervisor to verify the coverage of the drug. The Genzyme Rep said that some of the insurance companies are very difficult to deal with.

Having been told twice by customer service that thyrogen was not covered, to me cannot be explained away by poor customer service or lack of training. It makes me think that this may be a common practice with insurance companies to dissuade use of expensive drugs. Who knows? Customer service did not seem to have the information readily available and I don't understand why. Do they not have up to date information on their computers? In the end it doesn't really matter since the thyrogen isn't available anyways but insurance companies shouldn't be allowed to get any with pulling this kind of thing, particularly when people requesting coverage for thyrogen are doing so because they have cancer.

Thank you to Blue Butterfly for sharing her journey on her blog and allowing me to share mine. It is helpful to know that there are others out there on the same journey, it makes me almost feel normal again! I wish you all health and wellness.