This morning in a harrowing article entitled, Setting a price for putting off death:
A few more months of life may not be worth the costs of new cancer therapies, some argue, The Los Angeles Times chronicles how ordinary (in this case, tragically, older and terribly vulnerable) Americans struggle to pay for life saving and life prolonging cancer drugs. Then even more troubling, poses the question: who lives and who dies in America?
On Tuesday, the Food and Drug Administration approved GlaxoSmithKline's Tykerb, a once-a-day pill for late-stage breast cancer patients that costs nearly $35,000 a year. It's the latest of half a dozen new cancer therapies with names such as Avastin and Tarceva that can run as much as $100,000 for an annual supply.
Although the medications work much longer in some patients, they help extend the lives of most for only a few months.
The drugs' sky-high costs compared with their relatively small health benefits have sparked arguments among policymakers and medical professionals about what to do with the growing number of people who are depleting their life savings on the drugs or, worse, who can't get them at all.
More broadly, they ask, is this the best way for society to spend its increasingly limited healthcare dollars?
http://www.latimes.com/...
Meet Harriet and Mort Frank.
Since December, the retired Mission Viejo couple have been paying as much as $2,000 a month in out-of-pocket costs for Harriet's lymphoma medication, Rituxan, by Genentech Inc. and Biogen Idec Inc.
The Franks get by on $1,432 a month with their combined Social Security checks and a small amount of savings. But with the drug's expense eating into their modest nest egg, they're worried about what might happen next.
"So far this medication is working wonders," Mort said. "But I keep thinking, how are we going to keep affording it?"
Or 81 year-old Irene Knoll. This could be my mother, or yours.
Irene Knoll, 81, of Santa Ana is suffering the financial consequences of taking expensive medications. She was diagnosed with pancreatic cancer in December and is now on regular chemotherapy while taking several other drugs, including Johnson & Johnson's Procrit, which boosts red blood cells, to treat her cancer-related anemia.
Her Medicare HMO plan requires her to pay 20% of many medical bills. As of this week, she has an outstanding balance with her oncologists for $4,700. With her $1,200 monthly Social Security check, she has paid only $400.
I suggest you read the entire LA Times story, it will break your heart and scare you.
Which brings me to the other purpose for this diary. At YearlyKos, we too are going to chronicle these healthcare tragedies which unfold across America 365 days a year.
WE NEED YOUR HEALTH HORROR STORIES.
Keep reading and find out what we're planning and why we can't do it without you.
Try and come to YearlyKos, I was in Las Vegas, it was extraordinary. It's going to be a million times better this year.
You can register here: http://www.yearlykosconvention.org/
We want your health stories. We want to know how the for-profit American health care system, the most expensive in the world, has impacted your health, or the health of someone you know and love.
We want to hear from you.
We want to know if you are one of the 47 million without insurance and how you cope with this national catastrophe?
We want to know if you are underinsured? We want to know about the booby traps you must surmount, the gauntlet you must run with for-profit insurance companies, to obtain approval for life-saving health care.
We want to know if you believe your for-profit insurance company is practicing medicine without a license?
This is your chance to weave you own experiences into the narrative we will craft for the Journal of Netroot Ideas. This is your opportunity to stand up for single-payer universal health care in the United States.
Even if you can't be in Chicago, you can still participate in the YKos Journal of Netroot Ideas which we call JONI.
This diary is also an update on the Kossacks who have already taken leading roles and are working on various aspects of YKos Health Policy planning.
I'm just organizing the troops. Think of nyceve as the ringmaster of a three-ring circus, albeit a very serious circus.
But we've only just begun, and now is the time to join our people-powered effort. There's plenty of work for everyone.
The Health Policy Panel will make several submissions to the JONI. I hope one of our submissions will be a group effort which we will tentatively call, KOSSACKS SPEAK. This is where you come in, please read on.
Story Submission Guidelines:
Folks, this is a work in progress, we're trying something very new here, people-powered politics, so you'll have to bear with us. All we have is us. We have our passion and we have Daily Kos.
I think the best (and probably the only way to proceed), is anyone who wants a story considered, should write a brief, synopsis of your health catastrophe as a comment. Please be brief. We will read them and select those we believe best illustrate the collapse of the health care system in the United States.
If you want to be considered, you must have an email address on your Kos page. If you don't have an email, sadly we can't contact you, so submitting a synopsis without an email is an exercise in futility which will result in nothing happening. Sorry.
Whether these stories will be weaved into other sections of our JONI or will become stand-alone testimony is still an unknown. As I said, this is very much a work in progress.
Who's running the show:
Everyone and no one. But several people have volunteered to supervise various aspects of the JONI.
Please welcome, blue jersey mom. I met this amazing mom at a NYC Kos meet-up and she is exactly what you'd expect of a blue jersey mom--terrific.
bjm, has volunteered to edit, coordinate and supervise the section of the Journal which I've tentatively titled DENIED. More on the reason for the title in another diary. But I'll give you a hint, attend the YKos Health Policy Panel in Chicago. . .
DENIED willfocus on the Historic Role of Disinformation (Harry and Louise), why the Clinton Plan failed and, going forward, Building a Public Mandate.
Most important and this is where you come in, bjm and I will pour through all the brief stories that you will hopefully tell today and select those we believe are most compelling. Yes, of course they are all worthy of a place in the JONI, but life ain't fair, so please be understanding.
bjm, will also supervise the editing, writing, etc. of DENIED, the JONI submission.
The Policy Section of the JONI:
We are blessed to have two extraordianry Kossacks, DemFromCT and DrSteveB, leading this effort.
DrSteveB a well known Kossack, is a force of nature who no man or beast can control. DrSteve and DemFromCT a former DKos front page contributor, are writing, editing and supervising the policy section of the JONI.
If you want to contribute to, or make suggestions for the health policy section of the JONI, DrSteveB is the go-to person. DrSteve is the hands on person.
DemFromCT is contributing an entire essay on panflu to the JONI.
Now is the time to scream from the mountaintops: We're mad as hell and we're not going to take it any longer.
Please join us. All hands on board. Our voices will be heard.