Should cancer clinical trial results be public?

jenrio

Every year hundreds of new agents are touted as potential cure for metastatic breast cancer and other deadly cancers.   Few got into early stage human trials often by small startup companies.   Some do well, some do ok, some do badly.     Big Pharmas could afford to buy dozens of these small startup companies.   And mostly these new agents are never heard from again.  The public has no idea which ones do well, ok, or badly.  These results were sealed,  should they be somehow accessible to public?   

http://www.nytimes.com/2013/06/30/business/breaking-the-seal-on-drug-research.html?pagewanted=all

Several related issues about metastatic breast cancer funding and drug development are discussed here:

http://community.breastcancer.org/forum/73/topic/806626?page=2#idx_45

Etacstil was once a promising breast cancer drug that performed ok or better in early stage human trial, but the company was acquired by BMS, and its early stage human trial's data was never published.   When its development and clinical trial was abandoned and existant tablets destroyed by BMS, patients who were doing well on that drug sued to try to stay on the drug, but to this day, results on its performance IS NOT accessible by public:

http://community.breastcancer.org/forum/8/topic/806200

This movement towards data openness started in Flu treatment, but will not end there.   

Also in today's news, another *attempted* acquisition of a big cancer drug maker onyx by other even bigger drug maker amgen.   How does drug development for MBC and other deadly cancers changes with this kind of consolidation going on all the time?   Which project (on either side) will live, which project will die?   What happens to the acquired clinical trial data under the new overlord?   

http://www.latimes.com/business/money/la-fi-mo-onyx-pharmaceutical-amgen-20130701,0,2996281.story

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  Also, in wall st journal

  Roche, Astra to Share Drug Research Data

  In another example of big drug companies pooling resources to try to improve R&D, Roche and AstraZeneca will share data on early-stage drug design to try to speed up development of effective medicines.

My question is this:  If they are sharing data with each other, why not with to the cancer patients who risked their own lives to search for the cure?  Is it good for competition, ultimately good for patients, to allow data sharing just within 2 giant companies?

leggo

Yes , imo, they should. Also imo, pharmaceutical companies are greedy swine and it will never happen.

jenrio

Big Pharma, little pharma are like any other business.   When the public hold out money without asking questions or putting in check/balances, it will ALWAYS be taken advantage of.

The question is:

How should we help in finding a metastatic breast cancer cure?   What change should we make in our laws and healthcare strategy?   Who should we recruit to make such changes?   FTC and/or  FDA?  researchers?  economists?  computer geeks?  media?

Heidihill

Personalized medicine seems to me to be the way to go. This study shows the way in my idealized view.

http://www.sciencedaily.com/releases/2013/06/130613104106.htm

The investigators leveraged data from past NSABP breast cancer prevention trials that involved a total of more than 33,000 high-risk women -- the largest sets of such data in the world. Women in the trials gave scientists permission to use their genomic and other information for research purposes.

The scientists analyzed the genomic data by focusing on more than 500,000 genetic markers called single nucleotide polymorphisms (SNPs).

Is anyone doing this for MBC? I think we need researchers and computer geeks to get on the case if not. Medical ethics would tell us that the sickest should be helped first. Is there no database of MBC women to be mined? There must be. 

jenrio

Heidi, another story about Gene test information (in this case BRCA risks tests) being hijacked to pad corporate profit.  While patients and taxpayers pay through the nose, yet are unable to see their own information or share with researchers valuable information that could advance science:

http://www.nytimes.com/2013/06/19/opinion/our-genes-their-secrets.html?_r=0

Yes Heidi, there are whole genome projects for MBC.   Their price is coming down.   The only thing that goes as fast as cancer, is  computing and genome test power.   That's about the only good news I, as the MBC cure grinch, allow myself to be cheery about.