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Discrimination against uterine cancer

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

I have UPSC that acts like ovarian and is hard to treat. I have experienced denials from insurance companies for PET scans and chemo based on my uterine cancer diagnosis. These same tests and drugs would be covered if I had ovarian.

What's with that discrimination??? Seems like we are second class citizens. Why is ovarian blessed with coverage and those of us that need these same drugs can't get them without a fight or until we "prove" that we are worthy when the other drugs/tests don't work or show enough.

Time is money and may be life threatening. Who makes these decisions? Is there anything that we can do to stop this?

Mary Ann

debrajo's picture
debrajo
Posts: 776
Joined: Sep 2011

We are going to have to appeal to the private sector for help. i.e. Bill Gates, Warren Buffett, et al. I read the other day of a tremendous amount of research funds had been granted to M D Anderson for research into three types of "common" leukemia, ovarian cancer, (and wait for it!) breast cancer. Not a penny will be for us,BUT we may benefit from the Overian studies. Not holding MY breath! Know you are frustrated and tired of all the insurance hassle. The very thought of dealing with them makes me mad enough to "go postal"!!! Hope you are at least feeling better! best, debrajo

ConnieSW's picture
ConnieSW
Posts: 594
Joined: Jun 2012

But what good will it do us if we might benefit from new ovarian treatments if the insurance won't let us have them because we have a uterine dx? My daughter says we need to mount a campaigne that reminds everyone that the uterus is everyone's first home and go from there. Sounds catchy to me . She mentioned to me in the recovery room that her first home was gone. I had never thought of it that way but it's true. As I mentioned in a previous post, Jenn just ran a marathon and wanted to give funds to UPSC research and when we couldn't find anything, finally chose gyn cancers in general.

There are enough of us here to at least raise our voices together. What can we do?

txtrisha55's picture
txtrisha55
Posts: 424
Joined: Apr 2011

I have signed up for a 5K run (my first) for Cancer Support Community’s 2nd Annual ONE RUN here in Dallas, TX on Oct 6. It did let me choose which cancer I was supporting which was Uterine. I was very surprised that it was even listed as most the time it is not. Cedar Hill which is a sub of Dallas is having a Dirty Girl event the same weekend, for breast cancer. I do agree that more recognition needs to be done for Uterine cancer so if I can help let me know. trish

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

Some history here..... When Linda Procopio was diagnosed with UPSC 4 years ago she found the cancer support network here - but just ovarian discussion group. Thanks to Linda's advocacy that we have this uterine cancer link on ACS support network.

God rest her beautiful soul. She is watching over all of us.

Kaleena's picture
Kaleena
Posts: 1164
Joined: Nov 2009

I know what you mean Mary Ann. When I was first diagnosed with endometrial adenocarcinoma which was found in the uterus and ovary, I saw in my file that it said ovarian. But when I asked exactly what I was diagosed with they said endometrial, however, they were treating it like ovarian. Now I know why. It was because I could get the PET scans and other types of tests that they wanted me to have.

Two years ago, I had to switch insurance companies. With this new company I can't get a PET scan any more. Also with the new guidelines, unless you have symptoms, you can't get tests. I think my risk of radiation exposure is way past the point where I have to be concerned about any further exposure not to be able to get at least a yearly test.

Also, why can insurance companies deny doctor's orders for a certain test? It just doesn't seem right and then you have to settle for something less and then if they see something get another test.

Anyway, Mary Ann, I hope you get all the tests and treatment that you need without any hassel!

My best to you.

Kathy

laura25's picture
laura25
Posts: 160
Joined: Mar 2011

I was also denied PET scans because of my uterine cancer dx. I was told PET scans are not the standard for uterine, but if I had ovarian it would be.
I was able to get a PET last month when they suspected my cancer metastasized... and that was only after my doctor got on the phone and read them the riot act.

california_artist
Posts: 850
Joined: Jan 2009

Sorry to hear about your most recent woes.

When I have a gigantic problem, I actually do write to the White House, generally President Obama. This generates oddles of generic emails. Once I contacted Home Land Security, not in regards to this. For this type of situation my inclination would be for you to get a group of women willing to act with you in a letter sending campaign, or some form of contact. I would address my concerns directly to Michelle for this case. Hand written seems to generally take presedence? over typed, and if you get a nice circular coffee stain on the letter to draw attention to it, that might help too. Maybe make up a nice packet of letters and insurance denials from a group of you. It seems rather important that availability of tests has reduced.

I'm just saying,
wishing for best results for you all

My love to you,

Claudia

DoonyL7
Posts: 33
Joined: Sep 2012

Hello Daisy,
I think its just awful they are denying tests and drugs based on your uterine diagnosis. We need more women invovlved on the boards that pass judgement on treatments. I am sick and tired of men making decisions that affect my life......lorna

seaturtle
Posts: 41
Joined: Aug 2012

I think that is a very good idea. When I have run up against the system here in Vermont, Bernie Sanders has always acted and gotten results.

Would this be something we all might do?

debrajo's picture
debrajo
Posts: 776
Joined: Sep 2011

Would you believe someone told me the other day that the reason Ovc get funding and Uterine doesn't is that the ovc people "are sicker and that all the uterine people need is a hysterectomy and it's over"? IDIOT!!!!!

ConnieSW's picture
ConnieSW
Posts: 594
Joined: Jun 2012

Debrajo, I hope you gave that idiot an earful. Even my regular gyn told me after she did my biopsy that she was sure it was either precancerous or early and I would have a hysterectomy and put it all behind me. That made it even more shocking when the onc/gyn started throwing out words like "aggressive" and "chemo" and "radiation". Actually I had already been on the Internet so when I heard UPSC, I knew I was in trouble.

Turtle, I am an admirer of Bernie Sanders.

debrajo's picture
debrajo
Posts: 776
Joined: Sep 2011

I did! But the "you are over-reacting" look on her face made me ALMOST wish she could "over-react" herself...but I wouldn't wish this on anyone!!!

Pat51
Posts: 111
Joined: Feb 2011

Let me start by saying that I am also a UPSC patient. Mary Ann I am sorry to hear about your insurance problems. You are already fighting cancer, you should not have to fight the insurance company too!! All of your strength and effort should be going to fight UPSC! I believe that the insurance company should be there to help you...not give you more burdens to bear!! I agree that it is not right that as UPSC patients we are denied treatment that could help us because the insurance companies are ignorant about this type of cancer!!

One cannot help but notice the pink ribbons, supporting breast cancer. With the campagain for breast cancer awareness and huge donations to research, breast cancer has realized many advanced treatments....which is wonderful and I do not want to minimize their amazing accomplishments. I just wish that there was that much support for other cancers like uterine, UPSC, MMMT, etc. These seem to be unknown cancers as far a research goes, therefore no new treatment! I was told that UPSC (being rare)does not effect enough people to do research for it!! Great...so where does that leave women with this disease????....feels like the medical community, drug companies and insurance companies really don't care because it is profitable enough for them??

Pat

seaturtle
Posts: 41
Joined: Aug 2012

I am afraid it is about money (what else?) I have experienced the same trying to get treatment for anorexia. No specialists here, no funding in the local mental health agency. Obesity, a "widespread and serious health condition with long-term consequences" i adequately funded, as is diabetes. Nothing for anorexia - not enough people have it and after all, it's so easily cured if they would just eat more.

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