Will you bite the hand that feeds you?
Thursday, July 2 2009
If you’re sick and need assistance paying for your bills or fighting your insurer, the Patient Advocate Foundation is one of the best resources out there. They don’t charge for their services and – from what I understand – they are pretty effective.
Last week when I attended the Health Care for American Now! rally in DC, I finished the day in a hotel ballroom listening to physicians talk about the need from strong reform. In that same hotel was the National Patient Advocate Foundation’s 10th Annual Patient Congress. “Wow,” I said to myself, “here I am a patient, and I’ve never heard of this.” The National Patient Advocate Foundation – ‘The Patient’s Voice|Since 1996′- turns out to be the national lobbying arm of PAF. Keep in mind that Patient Advocates are not patients themselves, but people who speak for the patient.
They had a table of literature, and as I leafed through glossy tri-folds, a very congenial man began talking to me about the PAF and everything it does. He assumed I was a physician, so I explained that I was a patient. I told him why I was there and what was going on, and I asked: “What’s NPAF’s stance on health care reform?” He told me NPAF is generally in favor, but wasn’t very specific. “You can read about it online.” I wondered: why can’t the National Patient Advocate Foundation say anything stronger about reform?
And then I saw the big banner behind the information table, listing the sponsors of the event: AmeriSource-Bergen, AmGen, Lilly, Genentech, Novartis, Pfizer, Sanofi-Aventis, Schering-Plough, and US-Oncology. Pharmaceutical companies. It was an “a-ha” moment. I wish I had a photo.
When I got home, I looked up the NPAF’s platform on health care reform: Patient-Centered Health Care Reform Solutions (.pdf). Not surprisingly, it’s a milquetoast statement built on the premise that our current system works pretty well (except for the occasional person who falls through the cracks): “Further, NPAF proposes a vision that embraces both government and private sector financing of health care coverage with subsidies for those without adequate resources and tax incentives for individuals and small businesses.” This is basically the health insurance industry’s proposal for reform; NPAF’s board of directors, by the way, includes an Executive Vice President from UnitedHealth Group, an insurance company. Moreover, their reform platform says almost nothing about pharmaceuticals; elsewhere, you can read their positions on generic biologics, price negotiation, and prescription drug reimportation – positions which are nearly indistinguishable from those of the pharmaceutical industry.
Point being: I don’t think the NPAF can credibly claim to “The Patient’s Voice” on health care reform. Obviously, their perspective is colored by the money they receive from industry. This isn’t just about NPAF, either – a lot of patient advocacy and disease-specific organizations get funding from industry. For example, CCFA – check out their corporate partners. And this is probably the main reason why these organizations are not doing much to advocate for health care reform.
If you’re a patient concerned about reform, one thing you can do is contact the advocacy director (the title varies) for any group you are a member of, and ask them to push for reform. Ask the group to commit to what’s right for patients, even at the risk of alienating funders. These groups are too often the pets of industry, and they can’t help us bring about real change unless they’re willing to bite the hand that feeds them.
In 2008. out of 180,000+ Kentuckians who contacted PAF over 900 were given direct case management services and were never asked for a penny! I am the State Policy Liaison for Kentucky and have worked for the last 5 years as a volunteer (I AM NOT PAID) to spread the word that PAF is there and can help with health insurance issues, debt crisis and job retention! Until you know all the PAF does, I wish you would not judge. Check out our web site http://www.patientadvocate.org! I would love to tell you the stories of people who contact me and what PAF did to help!
Please don’t make rash judgements, because what you say, could keep someone from calling 1-800-532-5274 for help!
Luke
Luke – I hope it’s clear that I think PAF does good work. Nobody who needs help should feel discouraged from contacting PAF.
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.
You are so wrong and careless and should admit your gross mistake. i was there, and am a patient. maybe you failed to look around the room and see the bald patients or the ones with bandanas around their heads from cancer treatment? or the husband and wife “patient advocate” who were there for their loves one who died because they could not access care due to insurance denials or were home sick in bed or in the hospital? (so sorry it was not a patient, how dare they send a spouse instead! what a sham! damn them)
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.
alexander – Thanks for your comments. I apologize for any offense, but I don’t think I made a mistake. I wasn’t “in the room” – I was in the same hotel for a different event. At the hotel, I only talked to a representative at their table, and read some of their brochures – but before I wrote this post, I spent a good while reading up on PAF and NPAF, looking at their financial statements, and reading their documents. I am still convinced that NPAF’s reliance on industry funding keeps them from being the strong voice for change that patients need.
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.
we all spoke from one voice on the hill. we asked for health care reform that did not prejudice those with pre-existing conditions, like me. we all had very very personal stories to tell. there was not a whiff of influence on our position. we just wanted what is right. and i am sure our ask was not popular to other interests — insurance and drug companies — but we were forthright and unwavering in our demands.
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.
alexander – Thanks again. I am glad the Patient Congress was able to bring you and people like you to DC, and it makes me feel much better about the organization. Thanks for being an advocate for strong reform. I still have concerns about the industry-advocacy connection, but I would have been much less strident in expressing those concerns, had I heard your views before I wrote the post. I still worry – suspect, in fact – there will come a time when organizations like NPAF are forced to decide: do they throw their support behind a bill with strong reforms that threatens industry? or do they moderate their stance to keep the funding coming? I hope you’ll be among many patients and advocates keeping NPAF in the fight, if it comes to that.