Are we failing in our advocacy efforts? What can we do to change that?

According to the New York Times the situation for men diagnosed with prostate cancer is muddled.

They say:

The reasons behind the lack of data on prostate cancer are complex. A lack of financing and advocacy have roles. But so does the fact that prostate tumors grow slowly and can take 10 or more years to turn deadly. Not only does that make the disease particularly expensive and time consuming to study, but it is also a built-in disincentive for the drug industry, which typically has patent protection from 7 to 20 years.

A bigger obstacle to finding answers may be the patients, who have long been reluctant to participate in clinical trials, and their doctors, who tend to scorn such trials because they are already convinced that their chosen treatment is the best option.

One major clinical trial called Spirit, for Surgical Prostatectomy Versus Interstitial Radiation Intervention Trial, would have compared surgical removal with brachytherapy, which involves implanting radioactive seeds. Just 56 of the 1,980 needed patients enrolled, and the trial was called off in 2004.

“Men don’t go into the clinical trials,” said Dr. Daniel P. Petrylak, associate professor of medicine and director of the genitourinary oncology program at the Columbia University Medical Center. “That’s the whole problem. Patients ask me all the time, ‘What is the best treatment?’ And I can’t give them an evidence-based approach for that, because we don’t have the data.”

Prostate doctors and patient advocates often compare their cause with that of the other leading sex-specific cancer: one of the largest prostate cancer support groups is called Us Too, a play on the Y-ME National Breast Cancer Organization. The dismal state of prostate cancer research and advocacy pales in comparison to the campaign against breast cancer.

“We’re at least a decade behind where breast cancer awareness is,” Thomas Kirk, president of Us Too, said. “We need to catch up. The lessons learned by breast cancer are the ones we’re trying to apply to prostate cancer.”

I encourage you to read the entire article by clicking here.

Where do we go from here?