I agree with what has been mentioned. This organization was built on the need of addressing a disease little understood and one that is grossly overlooked. We have volunteered thousands of hours to further the cause of this devastating cancer. We want answers, we want resolutions, and we want a cure, as does every physician and researcher I have been privileged to work with.
Lung, Colon, Breast, Pancreatic and Prostrate Cancer represent 50% of (potentially) fatal cancer diagnoses in the US. Hence, we see where the focus is placed by the government and subsequently by the pharmaceutical industry.
About $200 billion have been spent on cancer research since the early 1970s. As far as I know, the cancer survival rate only has increased from 50 percent to 65 percent today.
Medicine is a business and we are the pawns in this business. To bring a new drug to the market approximately 1 billion dollars have been spent and 5 to 7 years have elapsed.
More than 90% of all drugs will not make it to the market.
Having said that, like everyone else we are frustrated with the system, how we develop drugs, and how much money is made for those benefitting from the financial gain.
Researchers can identify cells or pathways, but eventually it will take drugs to prove the response of the cancerous cells. Institutional Medical Researchers don’t develop drugs – Pharma does.
Clinical Trials have to be conducted in order to prove that patients can tolerate the drug (toxicity) Phase I. Phase II is to prove the patient response in a larger control group (generally 80 to 100 patients, Phase III compares the new drug to the standard of care. If indeed a drug shows overwhelming positive response, it can be fast tracked by the FDA and subsequently be administered to the patient. The greatest financial gain by Pharma is due to the off-label use of a particular drug. In other words, a drug shows promise in other cancers also.
And, this is it in a nutshell; not a pretty picture for those not fortunate to be lucky enough to benefit from the positive developments.
It is for that reason that patients need to take an active role in their medical care. Natural remedies may work, but have not been proven in clinical trials. As noted, it requires millions of dollars and more in order to conduct cohort medical studies. But, given the situation people are entitled to make choices and so they should.
Have we won the war on cancer? No, we are not even close to it. Will we see much in the next few years – I find it doubtful certainly concerning our cancer.
We are a small group in comparison to most of the other cancer hence, we need to stick together, work together, and if possible help each other in the most positive way imaginable.
This organization volunteers hundreds and thousands of hours to this cause. We are represented in the NCI, FDA, NIH and numerous other organizations. We have helped bring this cancer out of obscurity by connecting those affected by this disease. We started by handing out leaflets at major medical conferences (literally, Sara and I occupied the exit doors.)
Behind the scene the work is endless, but we are driven by passion and commitment with only one goal: to bring life saving treatments to those affected by this rare and little understood disease.
My two cents.
Hugs to all,
THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER