Bill would identify scientific advances for breast cancer

I'm sorry, but this is nothing more than feel-good legislation. There is nothing in this proposed bill that isn't already being done, by the professional medical organizations, philanthropic groups, BC-specific "awareness" groups, etc.



All the bill would do is order the creation of yet another "commission" -- this one not even composed of experts knowledgeable about the current research on BC. This hodgepodge of a group would be charged with evaluating the ongoing research and identifying areas that need more attention. What I see is congressional meddling. Then, if 3 years go by with "no progress" being made (by whose criteria?), the whole thing gets disbanded. There would be no money appropriated for this project.



Sounds like someone's re-election project. Sorry, but it's not convincing.



otter

In general, I dislike screening/prevention methods too (mammograms, awareness, finding environmental causes), as they have inherent limitations that will fail a big percentage of early stage patients and do no good for late stage patients.

However, research into metastasis and preventing metastasis is still a good direction because even late stage patients would benefit if further metastasis after NED could be prevented.

The cure has to come from a multi-pronged attack, understanding metastasis and preventing metastasis is an integral part.   Look at the cure for AIDS, ultimately it comes from a cocktail of drugs that does different things. 

 Still I don't like "prevention of metastasis" as primary focus.  It might be journalist speak for "let's get all the other patients on the bus and throw the current stage IV patients under the bus"...

details in my blog http://killerboob.blogspot.com

Science works by collaboration and competition.   I totally agree with data sharing and think it's time for the creation of a massive BC patient database, that includes patient records, response to various drugs, genetic analysis of tumors that's only possible now.   That database would improve targetting of future trials and allow old drugs to be re-evaluated.    Finally it's possible to understand why the best chemos we have only works in about 50% of tumors, and which 50% of patients would benefit;  why many chemos that we have tried in the past and abandoned worked for maybe 5% people, and which 5% would benefit;  Can we revive these drugs?  or repurpose them for a better delivery to tumor cells?  or create completely new drugs?

There were time in the early 1990s, when some people said AIDS could never be cured.   Well scientists proved them wrong.   There have always been people who thinks cancer could never be cured.   I think patients joining together with scientists and clinical trials can prove them wrong too.  One day terminal cancer would also have cures, then we could fund the prevention of breast cancer.   

I think the idea of the legislation is good.  Just the idea of metastasis prevention as the "primary" focus makes me suspicious.  Metastasis prevention is a great idea and even late stagers would benefit from this research.   So I'd love to see this direction being funded and pursued.  but so are a lot of other cancer treatment directions.

Thank you Kay for sharing the great links.    I'm all for sharing data and building the biggest database, the best database possible and speeding up the peer-review publishing and clinical trials that give out results immediately after results are in.  It would greatly sped up the research.

Given the millions of patients and hundreds of thousands dying each year all over the world, it's a shame that the biggest studies done so far is only on <10000 patients/samples.   Even with <10000 patients samples, there are so much insight gathered, it's unbelievable.  

The idea of collaboration vs competition is an interesting idea.    In the ideal world, we can divide the problem and assign each problem to a different researcher, no duplication of work, no waste of money, maximum effeciency.   But the researchers are human too, competition can be the best motivator.    So don't write out competition, it could easily be the key to the cure.

AIDS patients aren't divided into terminal vs curable ones, stageIVers vs stager Iers.   They asked for the cure, and they got the cure (much better options than terminal BC patients got anyway).   I'm all for funding increases for basic/translational science and research on whys and hows. Just not "primary prevention" type of studies. I admit my bias against all solutions that do not help stage IVers.  Fundamentally,  all BC patients are stage IV, as long as there's no cure.

Kayb, No arguments from me. I was referencing another post actually....doesn't bother me but I can envision some of the responses. Hope I'm wrong and the thread stays informative.

http://www.aidsmap.com/Prognosis/page/1044536/

"Most HIV doctors are now hopeful that the right treatment and care can mean that a person with HIV in the UK will live a more or less normal lifespan.

Researchers calculated in 2008 that modern HIV treatment would mean that many people with HIV will be able to live well into their 70s.

There is growing agreement that most people with HIV in the UK will die with HIV not of HIV."

If it's not a cure, it's way better than the few year life expectancy BC stage IV face.   And remember AIDS was a new disease that was discovered <30 years ago.   and AIDS patients get great new drugs while BC patients still using the same old chemo from 30 years ago.

I do not begrudge their great treatment, I applaud them.  But BC patients need to advocate their own interest, which is the same as the stage IVers' interest.   Primary prevention is a bit of a side-track.   

I'm thankful for the millions spent on research which has yielded a lot of understanding.   There are so many directions and ways we can understand the disease and work out the cure.  Yet spending on metastatic breast cancer research is a small percentage of total funds spent on breast cancer, I'm talking about a few percentage points.   I do not agree with that spending priority. 

When I finished chemo (good ol ACT) and got ready to do mastectomy, my sister asked me: but aren't you cured?   I'm like,  metastatic breast cancer has prognosis of a few years if you are lucky and bigger percentage of young women with early stage breast cancer relapse.    my sister has a PHD, yet she is brainwashed into complacency.   If the delusion of "cure" and "survivorship" is all  that billions of dollars buy, then we can do better.

Personally, I'd rather have AIDS than metastatic breast cancer.   And I'd rather spend my tax dollars on MRIs for song birds than "primary prevention".   MRIs for song birds are more likely to yield some new/useful insight than the 1000000000th mammogram...   Maybe one day, when there is cure, nobody needs to "prevent" anything or do any mammograms or mastectomies, and little kids don't need to thank their moms for "not dying"