State Laws Concerning Ovarian Cancer/TURN UP THE VOLUME AD CAMPAIGN

This site is one of the most comprehensive websites I have found so far dealing with EVERY aspect of ovarian cancer. Having ovca I only glanced at the first section "About Ovarian Cancer", but it looks to be very comprehensive.  At the top of the page you will see a section called "Advocacy".  Under that is "State Resource Guide".  You just click on your state and you can find every gynecological oncologist in your area, laws pertaining to insurance coverage of clinical trials, laws pertaining to insurance company's paying for diagnostic tests, whether or not there are state funds for OvCa research or awareness, how many cases of ovca are expected to occur in your state this year and a LOT more. If you don't like what you see about your state laws, go back to "Advocacy" and click on "Action Alerts".  That page will tell you how to get in touch with your state and federal representatives, what programs are being funded, etc.  Don't let things like Johanna's Law fool you. While it is a great law, as we all know, laws often do not come with the necessary funding to carry them out and this law took years to fund and is still underfunded. Congressmen will often vote for laws like that and than not vote to fund it.  With no money a law like that has no teeth.

Under the "Awareness" section you can listen to the radio spot, read the print ad or see the TV ad (I strongly encourage this, it is POWERFUL) for the TURN UP THE VOLUME campaign.  

They also have a clinical trials section that will not only walk you through the process and problems, they have an Clinical Trials Matching Service.  I haven't read much about this, but it appears that you give them your info and Dr info and if a trial comes up that you are qualified for they will call you.  That way you don't have to wade through every clinical trial only to find out you don't qualify and it may give some people the opportunity to do a clinical that might not have thought about it before.

I am very excited about this site. Literally everything you could ever want to know about ovarian cancer is on it.
We are always saying that we have to be our own advocates and I realize that wading through the mountains of information or even finding the information is very difficult, but here it is, all in one place and I think we need to take advantage of it.

I hope no one complains about me putting this site up like they have done with other sites. I think sometimes those that complain are jealous in some sick way. We all know we have had fakers on here who pretended to have ovca for the attention and I think it upset them that they were not receiving the attention that those of us with cancer get, if you can call tortuous chemo and tests attention.  I will trade my cancer for your healthy life anyday. I feel it was the same with the Happy Feet post. I feel sure that someone without cancer was jealous that we were getting some nifty shoes and complained because they could not get them.  Why else would anyone have complained?  I know it is sick but...  M H says we should put this stuff in journals, but unless you send an email to everyone on here that has cancer, those that need it the most likely won't see it.  So please don't report this.  We are dying here and we need this.

ovariancancer.org

I hope this helps all of us.
Jan

[TrudieC]

Perhaps we should add to the health pages?

[junamgen]

Thank you Jan for sharing.  It is a great site to get ourself educated about OVCA. I will be very dissappointed it this been takedn off.

peace and Love

jun

[Cindy809]

I'm so happy for you and the others that you have shared this information!!!!    Isn't it great!!!!  Cindy

[Janet535]

I've managed to have a quick look at this site and even though the state laws, insurance  etc are of no value to me (I live in Australia) the site offers a wealth of other information.

Thank you for taking the time to find it and sharing it with us all, we can all learn from it.

Cheers...Janet

[lvfrogs]

I hope that this post will stay on and we should probably keep bumping it up so that everyone gets to see it. Thanks Jan!

[jlock]

Thanks for the info on this site.  I hope we are able to keep this post up at the top of the page also.  ~~~Joanne

[Flicka0459]

First off.  Thank you Jan for posting this site it is very helpful with a tremendous amount of information. I think will be a great place to start with that sign we discussed. (after I read everything before posting I had to put this paragraph in so you didn't come to MD and kiss my rear end)

Comprenhesive my @ss.  Sorry to disagree with you sis, but I just got on there and I saw what they said about Maryland

Maryland
Ovarian Cancer Burden in Maryland
Estimated Number of New Ovarian Cancer Cases Each Year: 420
Estimated Number of Ovarian Cancer Deaths Each Year: 280
State Specific Facts
State Funds for Ovarian Cancer Research: $0
State Legislation on Ovarian Cancer: Designates September of each year as Ovarian Cancer Awareness Month (HJR 1/2002)
Insurance Coverage of Clinical Trials: Yes (Md. Insurance Code Ann . § 15-827)
Insurance Coverage of Ovarian Cancer Testing (CA-125 Test): No
Ovarian Cancer in Cancer Control Plan: Some
State Awareness Month: Declared each year by the Maryland legislature since September 2002
Ovarian Cancer License Plate: No
Genetic Discrimination Law: Yes (Ins. §§ 27-208, 909)

National Cancer Institute Designated State Cancer Center
Sidney Kimmel Comprehensive Cancer Center
Johns Hopkins University
Baltimore, MD
Tel: [phone]

For starters Research Dollars $0.......$0 are you kidding me.  $0. I can't stop saying it.  Lung cancer, breast cancer, whether or not the president likes jelly bellies vs. Raisinets gets more funding than Ovarian cancer. Their latest studies where back in 2000.  Hold on a minute I need to turn on some classical music to calm down.......................

Ok.  This site is very broad in it's coverage of topics for ovarian cancer.  I like how a celebrity who actually has OVCA is speaking out.  
It's great that there are celebrities without OVCA speaking out. Danica Patrick (which I'm a fan) has offered her services to make people aware of this awful disease.  

The thing that upsets me, I looked around that map they showed and all the states I looked at either had $0 research dollars or Unknown, come on aka $0.  Now when I had the CA125 test done, it didn't cost me one dime even though it says that it will cost me out of pocket.  So, I'm hoping that some of that other information is incorrect as well.  Also, they said that the insurance will pay for clinical trials.  I read the agreement thing they attached and as usual I think they are setting you up to pay out of pocket.

Ovarian Cancer License Plate?  I don't even know what to say about that.  Who cares?  Why? Did you know that most of the money goes towards administrative costs and making the thing.  We have one in Maryland for the farmers.  It costs $128 for 2 years out of that the farming community sees $1.  The rest goes to administrative costs.  That's $1 for all the farmers in Maryland.

And out of the goodness of their hearts they give us September for OVCA month.  whoopie! I didn't even know we had a month, because it is not advertise.  Well that is about to change!!!!!!!!!!!

I'm sorry to be such a downer, but sometimes these celebries think they do these great things and most of the donations go to "administrative costs"

And I'm really sorry if I hurt anyones feelings, because that was not my intentions.  I'm just really mad (in case you couldn't tell).

So if I get tossed off Understand, but I won't stop fighting for all of you and I won't keep silent.  I think my congressman hates me. That's ok I didn't vote for him last time.

Love
Lisa

[nyc lady]

September is not only Ovarian Cancer month....it is also all Gyn Cancers and several other "diseases".  None of us know that either.  It is up to us to make noise and make the difference.  10-15 years ago, Breast Cancer ribbons and walks and products were not all over the place...it took years of shouting from them to get where they are.  

As for research money, I know that there is a breakdown on how the federal government distrubts funds, I do know that OvCa does not get enough funding....again, we need to be there lobbying and making noise.  It is selfish of me to think that Pres Elect Obama can help make a difference, reality is, he has bigger fish to fry.  Although, he can and already has helped raise some awareness just by saying he lost his mother to Ovarian Cancer.  

Would be nice to have a famous spokes person, wouldn't it????  Eva LaRue (she is on CSI Miami) has done some PSAs etc and is paid, 100K a year...plus 30K per booking for her to speak or be present at an event.  We have Kelly Rippa who is a spokesperson for I believe it is the OCRF, Electralux donates 200 for every teal washer or dryer purchased.  Then there is Eva Longoria for one of the other organizations.  Wonder how much the others are getting paid.

[crecco]

Thanks Jan for bringing this site to our attention.
Yes it is time that we made some noise and brought the attention that ovarian cancer needs. I feel that it is just getting that one step, that one little boost, that will start the ball rolling. I have been saying for awhile now that we all need to start sending e-mails to all of the companies out there that might help. I still have the list of companies that support breast cancer and plan on sending them e-mails to try and get the to support all womens cancers. But it is going to take more than just one. We all need to stick together and just maybe we can make it happen.
   Chris

[Flicka0459]

Jan's working on the copy write thing for that sign and once we get the Happy Feet thing done, we can post it in each of our doctor's offices (with their permission of course).  I see my GYN in Feb, I know she'll put both signs up.  I have a friend who works at Johns Hopkins and she already told me she would put the signs up. My regular doctor already told me she would put it up in her office as well. I'll ask the people where I get my sonogram and my Mamogram (mammogram) done.  I'm sure they'll put it up too.  Heck I'll even ask my dentist to put it up in his office.  Women get their teeth cleaned.

Sorry about my last post I didn't really understand the intent Jan was trying to make.  What can I say it's a family flaw we have.  Mad first understand intent second.

Baby steps. Chris is right we need to stick together and it will get done.

Lisa

[Jan214]

Well Lisa if anyone doubts you are my sister now.... LOL We do get on our soapboxes, but at least we are passionate people.

OK, first off, by comprehensive I meant that it is the only site that I have seen that shows how much the DOD is spending on ovca, how much the NIH is spending on cancer, pending state and federal laws that affect ovca, state laws, state incident and death rates, state allocation of funds, and whether or not the state has a law REQUIRING insurance companies to pay for screening tests.  Tennessee has no law requiring insurance companies to pay for testing either, but out of the goodness of their little cold hearts they do. I pay 10%, just like I would for a hospital stay or an outpatient CT scan. Just because they aren't required to doesn't mean they won't.
The reason states that do, in their wisdom, require insurance companies to cover certain clinical trials is on the basis that most of what people think about trials is bogus.  People assume you are going to get the great new drug or a placebo, but it is not like that.  You are on some kind of chemo whether it be the new drug or an already approved one. If you are on an FDA approved drug than requiring ins to pay for "clinicals" makes sense because they would have to pay for that even if you weren't part of the study, and they would have to cover all realated expenses as well. See what I mean, jelly bean?  Don't hold me to that particular, and I will check but it would have to be something along those lines.

Chris is right about us all doing this together. We need to write up an email and a letter that we can send to those that have the power to do something for us and it would be more effective if we jammed up their emails, mailboxes and voice mails all at the same time.  We need to let them know that we are not just a few women scattered here and there.  We need them to see that there are a lot of us and that we are banded together and they can't ignore such a large group of dying people.  How would that look come time for re-election?

Take care of yourself.
Love,
Jan