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Advocating for cancer research

cindy0519
Posts: 173
Joined: Nov 2015

If this isn't acceptable - please let me know and I will remove it....

As someone who has both Invasive Ductual Carcinoma (breast cancer Stage II) and USPC (Stage IIIC1) that were diagnosed with 4 months of each other I have been feeling the need to advocate for cancer research in some way. 

I went to Washington DC last week, as part of the METAvivor StageIV Stampede, to advocate for more research funds for Stage IV cancer. We met with the staff from members of Congress (both House and Senate) and asked that they support adding additional $2B to the current budget at the NIH (National Institute of Health) for cancer research (in hopes that more funds will go to Stage IV research), pass the Social Security Disability Fairness Act so those with "terminal" illness have immediate access to SSD and Medicare (no 6 month wait!), and pass the Right to Try Act to allow "terminal" patients to have access to medicines and other treatment that are not yet FDA approved.

METAvivor and MET UP are great organizations but they focus on breast cancer.  We NEED this type of activity for uterine cancer also!!! Is anyone aware of anything like this for uterine cancer?  METAvivor and MET UP are looking for people to join this event and represent other Stage IV cancers at next years event in Washington. The more cancers that are present, the louder our voice, the more likely we are to be heard on this very important and life changing topic!

henhill's picture
henhill
Posts: 123
Joined: Aug 2016

Congratulations on this .... and thank you for taking the time out of your life to advocate.

DrienneB's picture
DrienneB
Posts: 186
Joined: Aug 2013

I also appreciate your efforts, and think it is fine to ask about this sort of thing on this discussion board.

-j

cindy0519
Posts: 173
Joined: Nov 2015

Thanks ladies.  Hoping to find someone advocating on behalf of uterine cancer but so far not finding anything.  The search continues....

Nellasing
Posts: 529
Joined: Oct 2016

You go Cindy!!!  Thank you for all your efforts- that is amazing :D  ((HUGS))

Kvdyson's picture
Kvdyson
Posts: 789
Joined: Jan 2016

Cindy, have you checked out FoundationsforWomensCancer.org? Also, if you are on Twitter, look into @GYNCSM which is a community of gynecological cancer patients and advocates. They also have a website at gyncsm.blogspot.com.

Because the type of uterine cancer I was diagnosed with is considered rare (MMMT), I contribute to Rare Disease Advocates at rareadvocates.org and the National Organization for Rare Disorders at rarediseases.org/for-patient-organizations/ways-partner/advocacy.

Hope this information helps and thank you for your efforts to advocate for cancer research!

cindy0519
Posts: 173
Joined: Nov 2015

Kvdyson - this is a great start! Thank you!!!  I have looked at the Foundations for Womans Cancer but havent done much with it as I still want to find out where and how they spend money that is donated.  I will check out the other three organizations as well.

Thanks agian!

christine8822
Posts: 38
Joined: Mar 2016

Hi Cindy, I am sorry to say that there doesn't seem to be much going on in the way of advocating for more research for uterine cancer. I asked my oncologist if he was pushing or could push for for more clinical trials for advanced endometrial cancer (he's the head of gynecological oncology at a big cancer center), and he said he was trying. So I guess one of my tips would be that whatever stage we may be at,  all of us should all talk to our doctors about what they are doing to foster more research in this area. And we should keep on asking.

I also had an idea of emailing researchers in the field directly and thank them for their work, and ask them to keep going with their research. I actually was in contact with a reseacher at Stanford and I think I gave him a boost. That probably would not be a practical strategy in the grander scheme.

But you're right about the problem. 

 Sadly, although it is the 4th most common women's cancer, and it kills 10,170 women year, uterine cancer is somewhat of an untrendy cancer. That is why you see the giant disparity between advocacy in breast cancer circles and uterine cancer circles. Uterine cancer death rates actually increased 1.9% per year between 2007 and 2011, but it's not like there has been a national outcry about it, or even notice. The National Cancer Institute has allocated only $54 million in grants to uterine cancer for 2016 and 2017, while breast cancer, the most high profile cancer, is allocated $699 million a year.  Women's cancers altogether kill about 30,000 women a year, while breast cancer kills about 50,000. But women's cancers are basically in the shadows.  Breast cancer has 51 grants for 2016 from the American Cancer Socity for a total of $20.4 million. Endometrial cancer has 11 grants, but the dollar figure is so low it's listed as "funding unknown".

I'm not at all interested in having uterine cancer turn into a saccharine commodity or a color. I'm interested, like you, in having more money designated for research for stage III and IV endometrial and other uterine cancer, especially new immunotherapy treatments that look promising. If you have a method of pushing for that, it would be super. Not sure who decides how much research $ goes to each kind of cancer. Thanks for bringing this up. I don't think the Foundation for Women's Cancer is exactly a high powered advocacy organization, but at this time it seems to be the only organization remotely doing this type of work. I found their website very unhelpful, confusing and not geared toward women in the midst of treatment and beyond.

At any rate, many of the women on this board are very private and very busy battling cancer at the moment and could use a political advocate, even if they are not in the position to assist. So anything that can be done, I applaud. 

https://report.nih.gov/categorical_spending.aspx

 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2582
Joined: Mar 2013

I actually particpated in a National Cancer Institute meeting in January 2016.  I was thrilled to hear that it is agreed that not much research has been done on this front.  As soon as they asked for funds to host the meeting it was granted since nothing has been done for a long time.  Sadly, research is painfully slow and I just emailed asking where they are at with the three areas chosen to be pursued.  

cindy0519
Posts: 173
Joined: Nov 2015

Let me know if you think another email asking where things stand would be helpful.  I'd be happy to send one as well if you dont' mind sharing the email.  Do you know of anywhere (charity maybe) that raises funds for research specific to this area?  I haven't found much but sure would be interested in helping to advance the cause ;)

christine8822
Posts: 38
Joined: Mar 2016

Agree. I'd be happy to write in as well, if we had a contact. Thank you.

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