#1
Posted 12 November 2015 - 01:57 PM
In the next month, Congress will make a big decision about how much to invest in the National Institutes of Health (NIH), the nation's biggest source of cancer research funding.
Adjusting for inflation, NIH has lost $6.5 billion in funding since 2003.
Congress has an incredible opportunity right now to restore some of that lost funding and find the next breakthrough for cancer and other diseases. Without this funding, the status quo will continue and cancer patients could lose their lives waiting longer for treatments to be developed.
Tell Congress your #Reason4Research and demand strong funding for the NIH - send your letter now >>
Take Action
This window of opportunity won't be open long: the House and Senate have only until December 11 to determine how the funding in the next budget will be invested. Before they decide, we need to make sure that they hear from concerned advocates like you, asking them to put their support behind disease research at the NIH.
There's no time to waste. With every day that passes, cures are going undiscovered - and patients are desperately waiting for new treatments.
Researchers are ready to move forward: since 2003, grant applications to the NIH have increased by almost 50 percent - but over the same period, the NIH went from funding nearly one out of three grant applications to only one in six.
This budget is our chance to reverse this dangerous trend and give cancer researchers the tools they need to take on this and other diseases.
Send your letter to Congress now demanding strong funding for the NIH. We all have a #Reason4Research, and Congress needs to hear yours!
Thanks in advance for raising your voice on this important issue.
Brian Connell
Senior Director, Federal Affairs
The Leukemia & Lymphoma Society
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#2
Posted 12 November 2015 - 07:16 PM
#3
Posted 17 November 2015 - 03:11 PM
http://advocacy.lls....ction_KEY=16385
#4
Posted 19 November 2015 - 12:14 PM
I also received the email recently and filled it in and sent it. Its actually very quick and easy to do. ALso I sent it to my kids to have them send it in as well. I have not got my wife to do it yet but she will, I just have to remember to tell her!
dx cml 7/2012; 100 mg sprycel; splenectomy 9/2012; reached prcu 10/2013; dx smoldering myeloma 1/2015; 80 mg sprycel 12/2015; 50 mg sprycel 7/13/16; discontinued sprycel 11/15/16
#5
Posted 19 November 2015 - 01:21 PM
We (U.S.taxpayers) are paying for the research, leading to the development of even higher-priced cancer drugs, that BIG PhRMA will capitalize on.
Having said that: Congress - Senate Committees - House Committees
Lawmakers demand higher NIH funding from House Appropriations
http://federalnewsra...appropriations/
For the benefit of yourself and others please add your CML history into your Signature
02/2010 Gleevec 400mg
2011 Two weakly positives, PCRU, weakly positive
2012 PCRU, PCRU, PCRU, PCRU
2013 PCRU, PCRU, PCRU, weakly positive
2014 PCRU, PCRU, PCRU, PCRU (12/07 began dose reduction w/each continuing PCRU)
2015 300, 250, 200, 150
2016 100, 50/100, 100, 10/17 TFR
2017 01/17 TFR, 04/18 TFR, 07/18 TFR 0.0012, 08/29 TFR 0.001, 10/17 TFR 0.000
2018 01/16 TFR 0.0004 ... next quarterly PCR 04/17
At the earliest opportunity, and whenever possible, lower your TKI dosage; TKIs are toxic drugs and the less we take longterm the better off we are going to be ... this is especially true for older adults.
In hindsight I should have started my dosage reduction two years earlier; it might have helped minimize some of the longterm cumulative toxic effects of TKIs that I am beset with.
longterm side-effects Peripheral Artery Disease - legs (it's a bitch); continuing shoulder problems, right elbow inflammation. GFR and creatinine vastly improved after stopping Gleevec.
Cumulative Gleevec dosage estimated at 830 grams
Taking Gleevec 400mg an hour after my largest meal of the day helped eliminate the nausea that Gleevec is notorious for.
Trey's CML Blog - Stopping - The Odds - Stop Studies - Discussion Forum Cessation Study
Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt
#6
Posted 19 November 2015 - 05:45 PM
I am so glad to hear you submitted the petition. I was puzzled that there were many viewers but there was no reply at all. I was wondering if people were taking action quietly. People on the forum are affected in one way or anoher( patient or family). We are the ones who have the most to gain in finding a cure for this terrible disease.
Just like you, I forwarded the petition to everyone on my email list and suggested that they spread the word as well.
Thank you
#7
Posted 19 November 2015 - 06:48 PM
Thank you for your comment re NIH funding.
Yes, we taxpayers are funding medical research. The priority for all of us on this forum, patients and families, is a better treatment / a cure. Without research and development of TKI , some members who were diagnosed years ago on this forum would not even be here.
I understand cancer treatment cost is astronomical. That is a different matter and has to be dealt separately. I would not want to stop research for cure for cancer because some entity might pocket the profit. If we find the cure we will not need to take Medicine any more.
As a matter of fact, there is another petition to urge the government to help make cancer drugs affordable for patients. You can search LLS site to find it.
I am not a politician and I do not work for a pharmaceutical company. I am not a republican nor democrat. I simply want to find cure for cancer badly.
#8
Posted 20 November 2015 - 08:30 AM
I thought the rationale for the high price of TKI's was that it was paying for the research.
#9
Posted 20 November 2015 - 04:40 PM
I see that many people have read this post. Let's get behind this effort to support increased funding for cancer research.
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