Thyrogen


At times I wonder if certain cancer treatments are more dangerous or harmful than cancer itself.  A couple of years ago, my cancer treatment made me radioactive for a couple of weeks to kill the remaining cancer cells.  (No, I did not glow.)  But I was isolated from friends and family for over 3 days.  They even gave me a letter to carry in case the radioactivity left in my body set off any alarms in government buildings or airports! That caused me to step back and wonder if that treatment was worth the risk.  It worked, so I guess it was.

I have friends that have gone through chemotherapy and take all kinds of medications with terrible side effects to treat cancer.  The goal is to kill the cancer, not the person.  At times, I wonder if the doctors remember that part.  It seems like the side effects from the treatments drain what little energy is left in our bodies at the time.

I’ve moved on from cancer treatment to cancer follow-up procedures.  My doctor recommended that I get Thyrogen shots and blood work to see if my levels change.  The Thyrogen stimulates the cancer producing cells.  The shots are administered two days in a row.  One shot is the left buttocks and the other shot in the right.  It is literally a pain in the @ss!  I got the first shot this morning.  Ouch!! It hurt and burned.  Now I have a headache and feel a little nauseous from the Thyrogen.  I don’t want to go back tomorrow for the second shot.  I’ve learned that part of surviving cancer is staying positive and doing things that I don’t necessarily want to do.  I will continue to fight the fight!!!

The results should be back next week.  I will do my best NOT to think about it and live my life. (Although every time I sit, my sore butt will remind me of the shots!) There is no point in worrying about it today.  I will need to remind myself of this several times a day.  If the blood work results are high enough to detect cancer, then they will move forward with treatment.  If not, then I will continue going back every six months for follow-up visits and testing.  Either way, I guess this pain in the @ss it worth it.  I am praying that the results are good.  Regardless, I will get through it and continue sharing my journey.

xoxo,

Thyro-Jenn

This experience was another reminder that my health is my responsibility.  I am in the process of scheduling my Thyrogen shots with my Endo.  I got a call back from one of the assistants.  She asked me if I made my appointment for the PET scan.  PET scan?  What PET scan? The last time I met with my Endo, we discussed Thyrogen shots and blood work, but a PET scan was not discussed.  I asked her if she was sure.  She said that I needed to get a PET scan the same day that I get the blood work.  I asked her to have the doctor call me.

It didn’t seem right, but I made an appointment for a PET scan.  Then I felt really overwhelmed when the latest appointment they had was 2:00PM on Thursdays.  I need to fast 4 hours before the scan and the actual scan is 75 minutes long.  I had flashbacks to when I was in that dark tunnel for my RAI scan.  I could even here the click, click, click noise and the nurse telling me to hold still each time a picture was taken.  Nooooo…I don’t want to go through that again.  Something just didn’t seem right.  So I called back and cancelled the PET scan appointment.

A couple of hours later, my Endo called me back and said, “So why do you need a PET scan?”  I said, “I was wondering the same thing.  Why did you add a PET scan?  We never discussed it.”  He said that he never added it.  I told him that his assistant called and told me that I needed one.  He apologized and said that she must have gotten carried away.  It was not in my paperwork.  (At that point, I could have gotten really angry about this confusion.  This is my body, my health, my time, my fear, my stress and NOT my mistake!!!) I felt a wave of relief come over me.  I really did not want to have a PET scan.  He told me that we were going to do the Thyrogen and blood work and see what the results were.  Then we can go from there.  That sounded good to me.  He apologized again for causing me any worry and inconvenience.

After I hung up, I remembered one of the many lessons that this cancer experience has taught me.  Life is precious.  Cancer feeds on fear, anger, worry and negative emotions.  There was no need to hold onto what “could haves” and  “what ifs.”  Here is an example of what I mean. “What if” I didn’t find out that the PET scan was not needed? I “could have” wasted a day of work going to get that PET scan.  “What if” my insurance didn’t cover it?  I “could have” been stuck with the medical bill. (And on and on and on…)  These thoughts do not serve me.  They feed cancer.  It is not worth getting upset.  The reality is that people are human.  They misread files and tell patients that wrong things at time.  But no damage was done.  So I am letting it go!

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!!!

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