<p>Aibarr, thank you for your post and for letting me know about the donation - congratulations and many thanks to that graduating class. I am thankful - and impressed - that they are aware of such a serious problem, and that they chose this as their priority, vs. other competing priorities. On Monday I will be reaching out to Patient Advocate Foundation to see what we might be able to do together. I am going to see if the five year survivor in Texas will join me on the call. </p>
<p>I have read so many times that most cancer patients who lose the battle don’t die of their disease, but rather they die of things like malnutrition, opportuntistic infections, toxicity issues from chemotherapy drugs, etc. And in many cases, in my opinion, they simply give up. I am convinced that a lot of these issues might be mitigated if some of these people just have some help - quantity and quality of food to eat, for example. Or help keeping their home environments clean. Or even just providing some stress relief by helping offset some of the bills, the co-pays. </p>
<p>I am so shocked and saddened when I hear of matters like a man being fired from his job and losing his insurance while laying in the hospital, or, a widow having to fight with insurance companies while grieving and raising children, or, heavens, I cannot even imagine the loss of a three month old and then having to argue with an insurance company about a muscle biopsy - yikes, can this possibly get any sadder? </p>
<p>To plagiarize a line from Hannibal Lector (either SOTL or the next book, I forget), within reach of my arm, the world will not continue to be this way. I will do everything I can, everything in my power to try to impact this situation.</p>
<p>Thinking about, it struck me that my oncologist and I did NOT spend an hour talking about how we’re going to beat my cancer. We spent an hour discussion politics, and his great, great frustration with the system, and the patients he is prevented from helping, because of financial, insurance, and legal issues. </p>
<p>I don’t want him focused on that; I don’t want it to even have to enter his mind space. I want 100% of his brain power focused on how to treat - and if possible - cure his patients. I am thankful that he has dedicated resources to reseach, so at least he knows how to treat me, and when to change those treatments. It’s not that he is neglecting me or anything, it’s just that I don’t think it’s right that he has to be focused on these things. </p>
<p>Thank you again Epistrophy for the information, it appears that this may give us the avenue to help people that we have been looking for. </p>
<p>CountingDown, I have a weird situation in play too - lab work double pay/over pay and now they’re sending me bills. It’s not worth my time to call them, so, I will wait until they call me…but if they don’t call me it will sit unresolved, and, if they even think of putting any entry on my credit report, it’ll get nasty…I’m with you on another matter too - the last few days, I have learned what it feels like to feel so lousy that you cannot even summon the strength to write an email or make a phone call. Thank heavens for at least being well enough to do these things - my heart breaks for those who cannot…</p>
<p>I am feeling better, the antibiotic was the culprit - managed to actually eat solid food yesterday, for the first time all week. And it helps a great deal to have my daughter here. :)</p>