[Rolepaul]

I think the part that really angers me is that there are approved drugs and the ability to combine them in treatment is not allowed. So if TDM-1 and Perjeta both have approval, there is not approval to use them at the same time.
Congress told the FDA to simplify the Compassionate Use/Compassionate Care path. If the patient requests a specific treatment because they have a life threatening condition, the ability to treat the person with a specific method that shows promise shall occur. Unfortunately, that does not happen. The standard approvals from many years ago are in place to prevent malpractice suits against hospitals and doctors, and pharma is not approving the use due to the massive lawsuits for side effects that caused damage. In the meantime Rome burns while Nero plays his fiddle.
Phil, I have worked with many outspoken people, and many advocates for the HER2+ cause at NIH/NCI/BreastCancer.org/etc. All of this pink ribbon garbage just makes me mad! Do the research, and do not give away the store to big Pharma. Help the patients with travel, with co-pays and deductibles, and with normal living expenses. We spend $25,000 plus every year on healthcare expenses. One out of every three hours I work goes to cover those costs. Insurance covers the direct cost of 98% of what it takes to keep Nina alive, but the indirect costs are crushing me.
I am a strong advocate for treatment and push the drug companies to go faster because it is in their best interest in terms of profitability. I push the government agencies because they are tax payer funded, and I push the hospitals because they need to save lives without cookbook medical treatment. In fifteen years, this will all be done with a set protocol, but they do not know what to do today. I believe we are where the Dallas Buyers Club movie was with AIDS. Today HIV is under control, but HER2+ is not. I plan on changing that as soon as I can. I work behind the scenes, but we need to have others work in front of the media and with their politicians.