After lots of prayers to the insurance coverage gods, I got my answer.  Melanie from BioScrip pharmacy called to let me know that my insurance (United Healthcare) WILL cover the thyrogen shots at 100% once my $250 deductible is met.  What? What? YAYYYY!!! WOOHOOOO!! Paying $250 is much better than having to pay $2,400 which is what it would have cost for two thyrogen shots without insurance coverage.  What a relief!

I started asking Melanie some questions so I could update my blog readers.  She was more than happy to give me some of the “inside scoop” and I am happy to share it with all of you.  I hope it saves many other people thousands of dollars and many phone calls to the insurance company.  (Please read my last post Thyrogen Shots and Insurance Coverage – Not? for information about thyrogen and to to hear about my first round of calls with the pharmacy and insurance company.)  My conversation with Melanie from BioScrip went a little bit like this:

Me: Is BioScrip pharmacy part of ThyrogenOne?

Melanie:  We are one of the approved pharmaceutical companies that supplies the doctors with thyrogen.

Me: How did you manage to get it covered by my insurance company?  Last week I was told it was not covered.

Melanie:  I went through the medical side of your insurance coverage.  It is not covered under your prescription plan.  So when your local pharmacy called it into the prescription side of United Healthcare, the coverage was denied.   It has to be called in and billed through the medical side.

Me: Ohhhhh. That is good information Melanie.  Thank you!  It really upsets me to think about all of the people who are trying to beat cancer or stay in remission and are told that the thyrogen shots are not covered by insurance simply because it was put through on the prescription side instead of the medical side.  It is tiring enough to live with cancer and go through all of the time-consuming, energy draining things we need to do to fight cancer.  If more people knew about ways to get their treatment covered by their insurance company, then it would make a positive difference.  I’m gonna blog about this!

Melanie:  I understand.  That is a good point.  I hope it helps other people when you blog about it.

Me: I hope so to.  I really appreciate you taking the time to talk with me.

There you have it.  That is how my conversation went with Melanie from BioScrip.  She was very knowledgeable and took time to explain things to me.  But I also asked the questions.  It is so important to speak up.  I didn’t go to school and take Cancer 101 classes.  This is not something that I had planned for my future a couple of years ago. There is a lot to learn and it all starts the moment we are diagnosed with having cancer.  So learn all that you can.  Make sure you get your information from reliable resources.  Ask all the questions you want to.  If something is not covered by insurance, fight for it.  This is your body, your health and your life.


I went for a follow-up visit to my Endo the other day.  My results from my blood work and scan were good (yay!). However, he wants me to get Thyrogen shots and blood work so he can make sure we are not missing anything. The shots and blood work are supposed to give us a better look at whether those thyroid cancer cells are really gone or just hiding.  Managing Thyroid Cancer with Thyrogen is filled with information about Thyrogen and a good resource to have on file.  I found it to be very helpful.

I had the thyrogen shots in 2009 to help prepare my body for the RadioActive Iodine scan.  The shots were covered by my health insurance company.  Since each shot is around $1,200 and I got two shots, I was very happy that I didn’t have to come up with $2,400 to cover the cost.  This year, my Endo sent the Thyrogen order to the local CVS pharmacy.  I got a call from the Pharmacist telling me that it was NOT covered by my insurance company. What?!!!  This year, it seems my health insurance company is going to fight me on the coverage.

It really upsets me to know that many people would settle with that answer and charge the $2,400 for the shots on a credit card that they probably already owe a few thousand dollars on already.  The lesson here is DO NOT SETTLE.  FIGHT FOR YOUR INSURANCE COVERAGE!! At least that is what popped into my mind when I was told it was not covered.

First I called my insurance company, United Healthcare to see why it WAS covered last year, but NOT covered this year.  The UHC Rep asked me if it was processed through the prescription side or the medical side.  I had no idea. She looked it up and said that it was not showing on the prescription side.  She put me on hold for several minutes, then came back and transferred me to someone in the Claims and Benefits department for further assistance.

The Claims and Benefits Rep was pretty clueless.  She was not sure what Thyrogen was and asked me to repeat myself several times.  I think she was stalling so she could fumble through the “UHC Customer Services Manual” 🙂 Next, she put me on hold for about 10 minutes, which is to be expected.  (I think they do that sometimes hoping the caller will hang up!)  Then she read me a couple of paragraphs of health insurance coverage lingo about my plan. I started wondering why I even called.  I am perfectly capable of going online and looking up my coverage.  I was calling because I thought speaking to a live person would be helpful.  But instead it increased my blood pressure…a lot! After 22 minutes, I ended up with no update or additional information.

BUT I DIDN’T GIVE UP. I did a little digging to see what I could find on my own.  I called my contact from Johns Hopkins  to see how they got it covered last year.  She told me that they go through ThyrogenOne, which is part of Genzyme, the manufacturer of Thyrogen.  ThyrogenOne is set up to send prescription referrals to the most appropriate specialty pharmacy based upon the individual patients insurance.  Each insurance company usually contracts with one or two specialty pharmacies so it is important that the Rx referral get to the right place based upon your insurance.  ThyrogenOne’s phone number is 888 497 6436, option 1, they would be able to provide you with additional details and possibly the prescription form your physician needs to fill out and fax in.  First find out if your doctor has a ThyrogenOne T1 Reimbursement Form.  That is what they need to get the order going.  If not, your doctor will need to call Thyrogen One directly to find out how to get the form.

It all started to make sense. My Thyrogen order was placed by my Endo with the local CVS pharmacy and so it was not covered.  Interestingly enough, I learned that PharmaCare, a specialty pharmacy division and subsidiary of CVS Corporation has been selected by Genzyme to be a national distributor of its drug Thyrogen(R) (thyrotropin alfa for injection), a diagnostic tool in the management of patients with well-differentiated thyroid cancer. Oh really!! So the local CVS was not selected to distribute the Thyrogen and therefore it is not be covered by my insurance company.  However, if the Thyrogen was ordered through the CVS specialty pharmacy division, PharmaCare, it would be covered? The plot thickens.

I got in touch with my Endo and let him know the details about the coverage of my Thyrogen shots.  He did have the forms for ThyrogenOne, but tried going direct through the local pharmacy first because sometimes that works. He will contact ThyrogenOne and get them the information they need for the order.  I’m hoping it will be covered, but I won’t know for sure until next week.

One more note…I discovered that since May 2010, there is restricted availability of Thyrogen in the US. See for yourself in this write-up from the USDA site CDER Statement to Healthcare Professionals: Restricted Availability of Thyrogen.  Isn’t it amazing what we can find out these days with access to the internet?

My Endo is on vacation this week.  So I won’t know the final outcome until next week (fingers crossed.)  I don’t know what will happen.  I do know that I need to save my energy for this little battle with the insurance company.  I won’t focus on it until I hear back from my doctor or insurance company next week.  There is no point in allowing it to take up space in my head this week.

I’m sure many of you have gone through similar battles with your insurance companies.  Let’s help one another and share information that might allow others to get a claim covered.  I will keep all of you posted when I get the next update.  Until then, please share your comments and any other good tips or advice that might help another cancer survivor win the health insurance coverage battle!!!

Some may call it six degrees of separation, the butterfly effect or good timing, but I call it a small world.   Here’s the cool little story.  About a year ago, I started “tweeting” on the international social networking site called Twitter.  At the time I had just been diagnosed with having papillary thyroid cancer and was tweeting all about it.  That’s where I “virtually” met Chris Prestano.  She had also been recently diagnosed with thyroid cancer.  So we had a common bond.  (Now keep in mind that Twitter has millions of people on the site from all over the world.  What are the odds of Chris and I connecting?)

Chris and I eventually became friends on Facebook as well.  We needed a place that gave us more than 140 characters at a time to message back and forth!  We emailed and IM’d over the course of several months, keeping each other updated on our progress and treatments. 

I soon discovered that Chris was living in NYC and traveling to Johns Hopkins Hospital for her doctor’s appointments, treatments and all the other fun things we get to do when being treated for thyroid cancer.  Well that might not seem like such a big deal to you, but it was to me.  Why? Because I was also was going to Johns Hopkins Hospital for my treatment during that time!  Well that’s just the beginning, so read on…

Chris told me about an organization called ThyCa and how they had monthly thyroid cancer support meetings in Baltimore, MD.  This sounded great to me and it close enough for me to drive there.  I really wanted to connect with other people face to face who had experience to share about thyroid cancer.  I decided to go to my first ThyCa meeting in November.  Chris was going to be in town that same week, so we decided to meet at the meeting.  It was nice to finally meet her in person.  We went to lunch after the meeting and spent a couple hours sharing “our stories” and our ups and downs.  What strong women we are!  During lunch, we were talking about cancer fundraisers and how thyroid cancer is in the shadows of it all.  I mean how often do you see people walking around with a ribbon for thyroid cancer? Exactly!  We wanted to do something.  Chris mentioned the American Cancer Society’s Relay for Life and it sounded really interesting to me.  So that is when the seed was planted for what has now turned into our “Wings of Hope” team.

I was contacted by the wonderful Katie Schwartz, Founder of the amazing site Dear Thyroid to write a post on my blog in December for their upcoming “Thyoliday Blues and Truths” series. When Katie asked me to pick a date for Dear Thyroid to post it on their site, I went with December 1.  

It seemed like all of these “thybulous” things started to snowball.  Chris got more info about Relay for Life and registered our team. Angel (another thyroid cancer survivor and ThyCa meeting attendee) joined our team and we were super excited!  It was actually coming together.  And it just so happens that Dear Thyroid had been in contact with Chris and offered to provide us with shirts for Relay for Life!  

So December 1 came around and my blog post was on the first page of the Dear Thyroid site!  What a proud moment that was for me. (Here’s where it all comes back together again.)  I scrolled down and the very next post was one titled, “Chris Prestano, Thyroid Cancer Survivor & Fighter Is Racing For A Cure” written about Chris and our Wings of Hope Relay for Life team!!! What? Are you kidding me?  I just happened to pick December 1 for Dear Thyroid to put my blog post on their site and it was the same day that they posted the one Chris wrote about our team.  Oh come on!!!

So that’s the cool little story about how Chris and I were brought together by thyroid cancer and joined forces to kick cancer’s ass.  It’s a small world!

There were so many bills from doctors, hospitals, pharmacies and on and on after all of the medical visits and procedures.  I am so grateful to have health insurance.  The two shots of Thyrogen alone was over $2,000!!!  Just check out this bill…Thyrogen receipt.  Even my doctor was surprised that it was covered by my insurance at 100%. 

Then there was the bill for the Thyroidectomy from the hospital, which was over $6,000!!!  Here it is…Thyroidectomy bill.  After going back and forth, it was all covered by insurance except for $275.  I was more than happy to pay that portion.

There were other bills of course, but those were the big ones through my thyroid cancer journey.  If I didn’t have insurance, I would owe over $8,000.  It just makes me think about all of the people who don’t have health insurance or who have plans with really high deductibles.  I can see how easy it would be to get into major debt due to medical bills.  I’m very blessed that mine was covered.  My heart goes out to all of the people going through there own journies with cancer or other illnesses who can’t pay the medical bills.