the head of PAF/NPAF lost her best friend to cancer and started this organization because the clock was ticking and her best friend lost, maybe because of our system. she started this organization out of her kitchen with no funding for years. she is a cancer survivor. her husband is a cancer survivor. they walk the walk and talk the talk. they have an army of patients and family and friends who would bring tears to your eyes with stories for what this organization has done for them.

they seek funding from individuals, grants, federal government, state governments, and, yes – “industry” — anyone who can help. Industry knows that patients oftentimes can’t access their drugs or medications or therapies or treatments. they set aside special programs that many people don’t even know about – and their doctors dont even know about. and they donate through their foundations to organizations who they can refer patients who call their switchboards looking for access to their life saving products who can help them. so maybe their contributions help build qualified staff at organizations like PAF to help others who don’t know the complex web of potential avenues for accessing these products and can battle with insurance companies and even the companies themselves. maybe this gives some industry a white hat for supporting these types of groups — but that is perfectly acceptable to me. in fact, private sector needs to do more on this front, and i wish they would do more. if they are looking for “white hat” areas to donate, i have a great suggestion….

I know for a fact that PAF and its advocacy arm — NPAF — will be the first to tell you they hope there isn’t a need for them in the future. but for now, they are the last hope — the last call you make when you hit the end of the road — and their efforts are saving lives and keeping families together.

The leading cancer groups in the country partner with PAF to solve their most difficult cases — ones no one else have been able to remedy. the last stop before your home is turned over to the bank or your next dose of a possible cure is just out of reach.

i appreciate your thoughtful response — i really, honestly do — and i thank you for it. we have the best healthcare in the world and middle class families and others are losing loved ones because the system does not work. NPAF has taken some pretty bold stances and has fought to have a seat at the table to speak for us — the patients — not the industry — so the fortunate ones like me can look our kids in the eye and tell them that we are going to be ok. we can keep our house and you can still stay in our neighborhood because daddy does not have to sell the house because of my chronic disease condition and the collection calls we get several times every night during family dinner for medical expenses — those have been taken care of. and i thank PAF – and NPAF – for helping me and my family during the lowest of lows to help wipe out my medical debt and get the medicine i need to keep on working and living.

and Mrs. Edwards was FANTASTIC!

sorry if i overreacted, but my (our) perspective is just so so much different. and out of all the organizations out there that need fixing, PAF/NPAF is not one of them. they exist because health care is broken. i owe them so much.

See my very next post, on Elizabeth Edwards’s speech to the Patient Congress; it’s clear from the video that most of the people in the room are in favor of pretty strong health care reform. But however strongly those people feel about reform, their perspective doesn’t come out in what I have seen in the policy documents and lobbying work that NPAF does.

Moreover, I have been pretty careful to distinguish between the PAF, which does good work, and the NPAF. But Ms. Edwards’s point remains valid: if our health care system was fair, if it worked for patients, there would not be a need for organizations like the PAF.

I will continue to applaud the work that PAF does, with the caveat that they are only treating the symptoms, not the disease. For all the patients PAF can help, what about the millions they can’t help? Who speaks for them? NPAF ought to, but doesn’t.

I don’t mean to pick on NPAF; this seems to be true of lots of patient-focused organizations. I don’t think we can rely on them to speak for us, so we have to speak for ourselves.

check out their website for funding: private individuals (wills), state medicaid funds, federal funds from congress, private corporate foundation contributions, grants and pilot projects. seems pretty reasonable.

their primary legislative focus is access to health care and health care insurance. especially with those with chronic disease conditions who bankrupt their families. (ME) and many of their positions are not popular with “special interests”

PAF successfully closed over 50,000 cases last year. their case managers are angels — nurses, medical professional, insurance professionals. people owe their lives to them. no one is pulling their strings when they engage volunteer lawyers to sure insurance companies for access to care, or work directly with drug companies to get complimentary drugs which costs thousands, so go pick on some other organization and do your homework.

My concern is NPAF – not the PAF itself. As far as health care reform goes, check out the Elizabeth Edwards quote in my next post: “The problem still exists as long as there is a need for the Patient Advocate Foundation.” My concern is that the NPAF is doing patients a disservice by not advocating for stronger reforms nationally – and that undermines the good work they are doing more locally.

Please don’t make rash judgements, because what you say, could keep someone from calling 1-800-532-5274 for help!

Luke