I created this blog when my sweet little girl, Kristen, was diagnosed with cancer, for the third time. After fighting for almost 3 years Kristen was called home to that same God who gave her life. One of my favorite quotes comes from Neal A. Maxwell- "Those who "plow in hope" not only understand the law of the harvest but they also understand what growing seasons are all about. True, those with genuine hope may see their proximate circumstances shaken like a kaleidoscope at times, yet with the "Eye of faith" they still see divine design." Kristen blessed lives and continues to do so. Her light continues to shine. As for me, I continue to "plow in hope" knowing well that Kristen is mine for eternity. Families can be together forever!

Saturday, January 30, 2010

OK...Now I"m MAD

I received a letter from Kristen’s bone marrow doctor today. It was a copy of the appeal letter he sent to the insurance company. The letter starts our saying that he was surprised to receive their letter denying transplantation for Kristen. He states that they (the insurance company) asked for certain things and he (the doctor) submitted adequate documentation supporting the items they requested. The letter continues to explain their data and such.
The last paragraph is the one that set me back a bit. It says,
 “Finally, it must be stated that in light of these facts, and the very quick denial we received from you, I am concerned that you are looking at this prejudicially, considering that because Kristen has Down syndrome this lifesaving procedure is not appropriate. She has a matched sibling available… and I do not think it is appropriate that Kristen should suffer discrimination based on the fact that she has a disability.”

Are you seriously kidding me? She was possibly denied because she has Down syndrome?

19 comments:

Beth said...

I dont know what tosay except that I'm pissed for you too, and to KEEP FIGHTING!

I'm praying hard for you all and I just sent off a card to Kristen!

My name is Sarah said...

This is Joyce. Unfortunately, we see procedures denied all the time because dx 758.0 accompanies the pre-determination or the claim when in fact it has nothing to do with the procedure. Once it is on the file it can be very hard to get removed. We have found some carriers to be better than others. Hopefully the doctor's appeal letter will help. Good luck.

Leah said...

I HAVE seen it before! My friend's son needed a kidney transplant, and it was quite difficult for them to get it approved because he had DS! And, he was already matched with is dad. It's only very recently that people with DS have been allowed certain kinds of transplants, and many are still not made available to them because the organs are in too high demand, and can be used for people have "more value" to society!!!

I AM, however, thrilled that your doctor isn't messing around and was quick to attempt to correct their line of thinking!

Heather said...

I so wish I were surprised but I'm not.What I am is sad beyond measure because our children are once again not viewed as children but rather liabilities,in many arenas and this situation,this life or death situation, is nothing short of disgusting.

This is not about having a chip on our shoulders either,this is real.The last sentences from your doctor is proof of that.

The fight continues and our prayers go with it.

Love from California.

stephanie said...

OMG!! Are you freakin kidding! That's complete discrimination! Is she not worthy of the BMT?
What the hell are they thinking!
I am beyond words right now. Insurance companies basically suck, that's a known fact, but this is lower than low.

Sending prayers that your doctors letter sets them straight.

ABandCsMom said...

Wow. How awful. Some just don't feel our kids are worthy. Did you know, kids/people with Down syndrome do not qualify for organ transplants? We found that out after we learned of Carly's severe heart defect. Talk about a swift kick in the gut. So, yep Leah, you're dead on with your comment. I believe the only way they (insurance co's) approve is if a family member can donate. Other wise, they feel our kids don't have the life expectancy as their peers. In turn, they deny! Sickening.

Angi said...

I can understand your anger, however the fact that the doc sent an appeal letter and stated what he did...you may have a better chance..it almost puts them in their place..DARING to DENY Kristen what she NEEDS...saying a prayer for you and your family.

Angi said...

I know it isn't quite the same but the reason my brother Chris didn't get his heart surgery (hole in his heart was the terminology they always used) was because "birth" parents didn't think he "needed" it..very common surgery for DS kids these days..usually never questioned..but 40 yrs ago???

ds.mama said...

That is horrible. I am so glad the doctor is fighting for Kristen.

Cindy said...

I would believe it if it was happening 30 years ago, but it surprises me that this mentality is still prevalent today. Thank God for your doctor! He's a keeper!

Kristin said...

My name is Kristin, I am a fellow cancer mom who just stumbled onto your blog. I live in West Jordan, and have just read a few of your posts, I would be livid if that were my daughter! Kristen is beautiful and I hope she can get the transplant she needs. I'll say a prayer for her! Hooray for your doctor, we go to Primary's too, I'd love to know which doctor it was.

Kristin Torres
www.sweetbrinley.com

heather said...

I'm glad the doctor called them out on it too. I thought we were beyond that kind of discrimination! Here's hoping she gets the approval now that the doctor sent in the appeal letter. Good luck!

Peter Olson said...

Be ready to take the next step.

Wise advice: You should never approach a bear cub especially with the mother bear around. She will not be afraid to use everything in her power to protect her young.

Focus that energy. Don't just get mad. Is there another step in the appeal process? Legal action? I don't know what the next step would be, but there has to be something.

Sasha said...

Keep up the fight. I feel your energy and determination and also your anger. She deserves what she needs. How crazy is that. I would fight, fight, fight. Thinking of you guys. The should know never to mess with a mama!!

SSBenjamins said...

I have been wanting to comment about this and looked for an e-mail address to actually e-mail you instead of a comment. I am MAD with you, I am disgusted at the way the system is with the disabled, many times when there are screw up's or lack there of they often say that it's because they do not contribute to society! "They", They are people, they are daughter's, son's, sisters, brother, we love our Disabled... Those of you who have a disabled brother, sister, daughter, friend etc. know what I am talking about. When they say that the disabled do not contribute to society how about all of the tests that THE hospital runs on them or the surgery's THEY do on them for THERE research.... "they" contribute to society more then the rest of us.
It sickens me to know end that Kristen has a sweet brother who is a donor and she is being denied.. Kudos to the doctor for the compassion, he/she had to love Kristen and see that she IS a person, because she has down syndrome does NOT make her lower then another person going through this.. Shame on society, shame on those who have NEVER loved a person with a disability- they have NO idea how it is to LOVE these sweet spirits and see there smile each day. My life has forever changed with the loss of my brother, my whole Family has changed, I have an older brother out of state who has been SO sick they now don't even know what's wrong with him, our Family was SO blessed to have Trent in our home, now were all wondering what to do with ourselves, he brought so much love to us and to those he was around.
YOU FIGHT for KRISTEN, I will FIGHT for Kristen, I will do anything.. She deserves the same rights that SO many are fighting for right now- it seems the disabled are the one's ALWAYS pushed aside..
So sorry for rambling.. Kristen is a gift and I am here for anything you may need..
Legal action, I cannot help with: A voice I can be.. I would look into this more if I were you- your a great Mom and I see my Mom in you for fighting for your daughter's rights.. If I could only tell you the hell we went through.. Someday I will.. Hang in there, much love.. Go momma, GO!

mandd3 said...

How about going to the media? Is there a local channel that might do a story on it? Especially in this case when you have found a donor on your own. I do not know how to change the mentality that one person's life is more valuable than another's, except that we have to take that factor out of the equation. It should just be a set of criteria that need to be met and than the procedure should be covered, regardless of anything else. Praying for you and your daughter.

Alex's Mom said...

This is so sad....not only do we have to worry about our kids when they are sicj we have to fight the system that is supposed to heal them. Best of luck and keep up the fight - we are all in this together.

Beth said...

Unfortunately I am not surprised at the insurance denial. But I am surprised and pleased with the doctor who is calling their bluff. He sounds like a fighter for Team Kristen!

Stephanie said...

As much as I hate to say it, it could be a possibility....they tried to deny open heart surgery for my son, saying it was "elective" because he has DS. When I asked why it was considered elective because of that I was told because I could save everybody a lot of trouble if I let him die!!!!! Unfortunately for THAT supervisor - they were from my hometown and I went to school with them. A not so gentle reminder that I was only an hour away and remembered where they lived cleared things up nicely. ;)

I was just watching Dateline last week and they were talking about a situation similar. There is a non-profit group who fights on your behalf for insurance coverage.....I will try to get the name and contact info for you.

Still praying for you guys!

Hugs!

Steph and Christopher
www.ourlittlemanhasmoore.blogspt.com