Aa
FINALLY!!
June 4, 2008
Three cancer groups, the Ovarian Cancer National Alliance, the National Breast Cancer Coalition and the Leukemia and Lymphoma Society testified today to members of Congress regarding cancer research. In front of members of the Appropriations Subcommittee on Defense, the groups, separately, advocated for increased funding for specific cancer research programs.
Mark Carlebach, the widower of Lacey Gallagher, represented the Ovarian Cancer National Alliance in requesting $25 million for Fiscal Year 2009. Carlebach told Congress about his wife and her proposal that advocates should change their argument for research money. Before her death, Ms. Gallagher suggested that advocates look not at the total amount of money allocated by cancer type, or by cancer incidence, but by cancer mortality.
Using those figures, ovarian cancer research is drastically underfunded (PDF). Last year the Congressional Directed Medical Research Programs funded $138 million for breast cancer research, $80 million for prostate cancer research and $10 million for ovarian cancer research. This funding represents $3,000 for each breast cancer or prostate cancer death—but only $650 for each ovarian cancer death.
Carlebach told the senators that while it is terrible to have cancer, it is even worse to have cancer that has a relatively low incidence rate with a lower pubic profile, less funding, less research and less hope for successful treatment. He urged Congress to compensate for this by considering the number of deaths from a particular disease as a basis for funding decisions.
Carlebach’s emotional and personal testimony prompted Sen. Daniel K. Inouye (D-HI) to extend his sympathies to Carlebach for his loss. The senator’s wife died from cancer in 2006. The Ovarian Cancer National Alliance has been working with its friends in and out of Congress on this funding and will continue to advocate for a $25 million allocation at Ovarian Cancer Capitol Hill Day, and throughout the appropriations process.
Three cancer groups, the Ovarian Cancer National Alliance, the National Breast Cancer Coalition and the Leukemia and Lymphoma Society testified today to members of Congress regarding cancer research. In front of members of the Appropriations Subcommittee on Defense, the groups, separately, advocated for increased funding for specific cancer research programs.
Mark Carlebach, the widower of Lacey Gallagher, represented the Ovarian Cancer National Alliance in requesting $25 million for Fiscal Year 2009. Carlebach told Congress about his wife and her proposal that advocates should change their argument for research money. Before her death, Ms. Gallagher suggested that advocates look not at the total amount of money allocated by cancer type, or by cancer incidence, but by cancer mortality.
Using those figures, ovarian cancer research is drastically underfunded (PDF). Last year the Congressional Directed Medical Research Programs funded $138 million for breast cancer research, $80 million for prostate cancer research and $10 million for ovarian cancer research. This funding represents $3,000 for each breast cancer or prostate cancer death—but only $650 for each ovarian cancer death.
Carlebach told the senators that while it is terrible to have cancer, it is even worse to have cancer that has a relatively low incidence rate with a lower pubic profile, less funding, less research and less hope for successful treatment. He urged Congress to compensate for this by considering the number of deaths from a particular disease as a basis for funding decisions.
Carlebach’s emotional and personal testimony prompted Sen. Daniel K. Inouye (D-HI) to extend his sympathies to Carlebach for his loss. The senator’s wife died from cancer in 2006. The Ovarian Cancer National Alliance has been working with its friends in and out of Congress on this funding and will continue to advocate for a $25 million allocation at Ovarian Cancer Capitol Hill Day, and throughout the appropriations process.
I sympathize with those pink ribbon gals and guys but enough pink already !!! Time to tell teal stories of survival, treatment and get on with new research.
To whom and where do we write to advocate more funding ? Great info Thanks, Withe
AND P.S
When is ovarian cancer day on the hill ?
To whom and where do we write to advocate more funding ? Great info Thanks, Withe
AND P.S
When is ovarian cancer day on the hill ?
Wow, I like the way you put that (about the TVUS). I had the same conversation with my oncologist and got a similar response.
I think starting at age 18, every woman should have an trans-vaginal ultrasound and continue to have them every 5 years. With ovarian cancer affecting so many younger women, why not? If they get a "false" positive, then follow up every couple months to be sure. Big deal... In fact, I think they should be as routine as a annual pap. How many women have had false positives on those? Even then, HPV is a cancer scare and doctors don't seem to have any problem telling women that they could develop cervical cancer later in life, or they could just build immunity, as MOST ladies do.
I agree with what you wrote about being scared, if anything it raises awareness. And that's worth it.
I think starting at age 18, every woman should have an trans-vaginal ultrasound and continue to have them every 5 years. With ovarian cancer affecting so many younger women, why not? If they get a "false" positive, then follow up every couple months to be sure. Big deal... In fact, I think they should be as routine as a annual pap. How many women have had false positives on those? Even then, HPV is a cancer scare and doctors don't seem to have any problem telling women that they could develop cervical cancer later in life, or they could just build immunity, as MOST ladies do.
I agree with what you wrote about being scared, if anything it raises awareness. And that's worth it.
Yes I agree, it is about time.
And at the risk of sounding insensative (but I do not mean to be either) I am with Jan 100%. Every woman in America (at the least!) should know by now that there are tests for the early detection of breast cancer, whether they are self exams or mamograms. But if you are even at a slight risk, you know that you can be checked regularly and hopefully catch it fast. But we do not have that option. Go back and read the statistics that she told you about. There may be a lot more cases of breast cancer but the survival rate is very high, especially when compared to ovarian cancer. It is way past time that some of the research and funding be used to do for ovarian cancer what they have done for breast cancer. As I said, I am not being insensative, my mother was dx with breast cancer 20 years ago, had a mastectomy, and has never had a problem one since. So I am thankful that they knew as much as they did.
I often wonder if so much emphasis is put on breast cancer because of the fact that a woman comes out of that experience completely disfigured. But that can be fixed should she chose to do so. Ov ca leaves you disfigured also, but in a different way. I would say that a young woman dx wth ov ca, that goes through the whole mess of chemo and surgery etc, ends up losing much more. If I had to chose between losing a breast or never being able to have chlidren, the breast would go in a heartbeat.
Bush can slash the budgets because obviously he and his family have not been touched by a cancer such as this. But you can bet your butt, if it were his wife, or daughter, or mother, or sister, it would be a whole different ball game.
Hopefully we will see this as a reality in the very near future.
Chris
And at the risk of sounding insensative (but I do not mean to be either) I am with Jan 100%. Every woman in America (at the least!) should know by now that there are tests for the early detection of breast cancer, whether they are self exams or mamograms. But if you are even at a slight risk, you know that you can be checked regularly and hopefully catch it fast. But we do not have that option. Go back and read the statistics that she told you about. There may be a lot more cases of breast cancer but the survival rate is very high, especially when compared to ovarian cancer. It is way past time that some of the research and funding be used to do for ovarian cancer what they have done for breast cancer. As I said, I am not being insensative, my mother was dx with breast cancer 20 years ago, had a mastectomy, and has never had a problem one since. So I am thankful that they knew as much as they did.
I often wonder if so much emphasis is put on breast cancer because of the fact that a woman comes out of that experience completely disfigured. But that can be fixed should she chose to do so. Ov ca leaves you disfigured also, but in a different way. I would say that a young woman dx wth ov ca, that goes through the whole mess of chemo and surgery etc, ends up losing much more. If I had to chose between losing a breast or never being able to have chlidren, the breast would go in a heartbeat.
Bush can slash the budgets because obviously he and his family have not been touched by a cancer such as this. But you can bet your butt, if it were his wife, or daughter, or mother, or sister, it would be a whole different ball game.
Hopefully we will see this as a reality in the very near future.
Chris
That is fantastic...it's important to get the light on how much these other cancers, including ovca, need funding! The truth is, it's just an 'unpopular' cancer. I mean, who wants to wear a 'teal' bracelet or ribbon when you can wear a 'pink' one right? And, yes, as stupid as that sounds it boils down to that type of public relations. The more people effected (incidence of a cancer) the more likely you have supporters to write to congress, hold marches, whatever. Even though ovca effects less women, it has a higher death rate than breast cancer...and, yes, just like what was posted...is underfunded because (as horrible as this sounds)...there are fewer survivors that do what the popular cancer survivors do. Disgusting.
At my local market, it's always asking for donations for 'breast' or 'prostate' cancer and I refuse and get a dirty look. I then have to explain that if they want to ask for donations for ovarian or other less popular (and I say it that way) cancers, i'd be happy to donate.
Breast and Prostate cancers are more survivable than ovarian cancer. I think I saw some statistic where it's almost 80 or 90% survivable (everything from CR, PR to SD) compared to ovca where it's below 50% if I recall. Yet the alliances for those two are sooooo strong, they will not stop until it's 100% (which is fine) while stomping out other cancers for their cause.
Whoa, sorry...it's frustrating. And why can't the NCI get more funding instead of getting it's budget slashed by the Bush administration? I mean...what the heck is going on????
At my local market, it's always asking for donations for 'breast' or 'prostate' cancer and I refuse and get a dirty look. I then have to explain that if they want to ask for donations for ovarian or other less popular (and I say it that way) cancers, i'd be happy to donate.
Breast and Prostate cancers are more survivable than ovarian cancer. I think I saw some statistic where it's almost 80 or 90% survivable (everything from CR, PR to SD) compared to ovca where it's below 50% if I recall. Yet the alliances for those two are sooooo strong, they will not stop until it's 100% (which is fine) while stomping out other cancers for their cause.
Whoa, sorry...it's frustrating. And why can't the NCI get more funding instead of getting it's budget slashed by the Bush administration? I mean...what the heck is going on????
thanks for sharing the info Deandra, the governments outlook on the monetary awards are just plain sad. Hope you are feeling well these days. I agree with Kathy on the info given to us at diagnosis, perhaps in time some of the survivors could put a booklet together. Getting the money for printing and distribution becomes the hard part. I have spoken to my own hospital about setting up a "big sister program" with survivors of OVCA helping newly diagnosed patients get thru chemo at least. She has promised to try and get it going. Problem is coming up with enough volunteers willing to share there time. At least I was able to pass on our website to her. A place to send patients for info.
Lets hope government hears our pleas for more funding.
butterflytc
Lets hope government hears our pleas for more funding.
butterflytc
I really wanted to just say Hi..It's really good to hear from you. . Also, this will bump up since I think its really important information..
Good hearing from you,
Sandy
Good hearing from you,
Sandy
There are so many false 'positives' (functional cysts) with the TVUS that the medical community has decided that it is not worth scaring millions of women to save a handful. That is what my onc has said and although I don't think the man has ever been angry in his entire adult life, this subject upsets him greatly. He teaches CE classes, and lectures at a good many conventions and he is ALWAYS an advocate for this cause. He, and I agree, that it is no different than the false "positives" or suspicious spots women see on mammograms and they aren't worried about scaring us silly for that. I have had 3 mammograms where I had to go back and be retested. Most of the women I know have had that experience at least once in their life. If I don't mind being worried for a couple of weeks to save people from breast cancer, I would think other women wouldn't mind so much if they realized they may not only be saving someone else's life but their own.
Jan
Jan
Thanks Deandra and Jan for this information.
I have a unique perspective about these cancers and their funding, since I've had both breast and ovarian cancer.
When I was diagnosed with breast cancer, I was referred to a breast care specialist at a wonderful clinic nearby. She presented me with a personalized notebook. It included my medical reports, treatment options, and pages of information about everything from where to get free wigs in town, where to get your head shaved, 24-hour phone numbers for support, local support, etc. Almost 100 pages of information. I didn't need much of the info at all, since my breast cancer was detected at late stage 0. I held on to the notebook as a resource guide anyway.
It's a good thing that I did.
A year later, they found ovarian and uterine cancers. I had surgery, got a port put in, and met with the oncologist. I was given two xeroxed pages of information about carbo and taxotere (which were off the internet, and I already had them). I asked for more information and was given only an outdated pamphlet about ovarian cancer.
Why wasn't there the same amount of information given to me about ovca local resources, current studies, etc? Hate to say it, but Thank God I'd had breast cancer already. I wouldn't have known what to do without the information in that notebook.
I'm going to the site listed in Jan's post. I'll copy this post of mine and send it to them. Thanks.
Kathy
I have a unique perspective about these cancers and their funding, since I've had both breast and ovarian cancer.
When I was diagnosed with breast cancer, I was referred to a breast care specialist at a wonderful clinic nearby. She presented me with a personalized notebook. It included my medical reports, treatment options, and pages of information about everything from where to get free wigs in town, where to get your head shaved, 24-hour phone numbers for support, local support, etc. Almost 100 pages of information. I didn't need much of the info at all, since my breast cancer was detected at late stage 0. I held on to the notebook as a resource guide anyway.
It's a good thing that I did.
A year later, they found ovarian and uterine cancers. I had surgery, got a port put in, and met with the oncologist. I was given two xeroxed pages of information about carbo and taxotere (which were off the internet, and I already had them). I asked for more information and was given only an outdated pamphlet about ovarian cancer.
Why wasn't there the same amount of information given to me about ovca local resources, current studies, etc? Hate to say it, but Thank God I'd had breast cancer already. I wouldn't have known what to do without the information in that notebook.
I'm going to the site listed in Jan's post. I'll copy this post of mine and send it to them. Thanks.
Kathy
I hope and pray that there is more awareness for this disease as there is not enough funding available...also like a yearly pap smear and mammo are recommended the screening for ovca should also be recommended...how about a pelvic ultrasound every and a ca-125 possible used as a screening tool...that is the way to go!!! Ovca can go undetected for so long as you all know ....what would be the big deal to include these tests as part of a yearly physical...I know there really isnt anything specific to determine ovca but this would work...just like they recommend colonoscopies, prostate tests, etc.....we need to stand up as women and fight for what needs to be done! Love, Gia
Thank you Deandra for letting us know this. They say you can't put a price on life, but it looks like the government can and my life is worth 650 bucks? While I sympathize with breast cancer patients, I don't know anyone who has died from breast cancer (although I know people who have known people that have) and I know a lot of women who have or have had breast cancer. On the other hand I know 7 women who died of ovca last year. My oncologist says that if women would follow the recommended guidelines for breast cancer detection, 15,000 lives would be spared each year. (I don't know where he got that figure) The rate for new breast cancer cases is estimated to be 182,460 in 2008. The estimated number of women who will die of breast cancer is estimated to be 40,480. GIven those figures, the death rate is a little over 20%, but if women followed the screening guidelines, that number would decline to roughly 25,000. Given those numbers, the death rate would drop to roughly 13.5%. It is estimated that there will be 21,650 new cases of OvCa in 2008 and the estimated deaths from OvCa will be 15,520. (1) That is a rate of roughly 72% and we do not have the option of just not going for our yearly screening because there isn't one. My family Dr and my oncologist both say that there are numerous places a woman can receive free mammograms and that there is no excuse for not having one. I hate to sound insensitive on this subject but we do not have the option of reducing the death rate of ovca by 7% just by going to an exam. If we could, that would save an additional 1086 lives. Cancer research costs the same no matter what cancer it is and to be so underfunded in my book amounts to criminal negligence. Breast cancer research has had it's day in the sun and everyone should be aware by now of the importance of yearly mammograms. It is time to balance out that equation and PUSH for cancer research. I have to get ready for church but this afternoon I will do some research on people we can write, email, and call to advance this issue to a more humane and fair equation.
1. www.cancer.org/downloads/stt/CFF2008Table_pg4.pdf
1. www.cancer.org/downloads/stt/CFF2008Table_pg4.pdf
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