I’m extracting this from my previous post into a separate one. As I say below, payment policy isn’t my focus, but what happened in this session is an important example of the difference it makes when patients are running the show and dominate the audience. Don’t jump to conclusions until you get to the end.
Whoa: this subject has caused eruptions among the patients in the audience. After the speakers finished (see below), during Q&A an audience member explained what was really going on, which had not been made clear by the (non-patient) panelists. An audience that had been silent all day became a small roar:
“You are out of touch with reality: look downward, at the lower parts of society!”
“We have a child with a brain tumor – he had surgery … we have no insurance card, and he has complications and now he cannot get surgery!”
Any of this sound familiar in the U.S.? Yes – but you don’t generally hear it said loudly, by people who feel the personal impact, at conferences.
The subject was the European Directive on Cross Border Care, which gives insured patients the right to go get care in another member country. The details of this policy are over my head, but in some ways the arguments are familiar in the U.S.: speakers on the dais gave talks about important new things that are possible, but to the patients in the audience it’s a whole lot of BS, because if you can’t go do what the speakers are talking about, it’s a waste of time:
“I’ve been listening to you since morning and it’s all for nothing”
“It’s not possible to do this, so what difference does it make??”
This is what you get when a conference is created by the ultimate stakeholder, instead of the conference organizer bringing in a few to hear what they think. But I’m still not sure why there aren’t more patients speaking on the panels!
9:02 a.m ET update
During the coffee break I learned what the patient uproar was about. (I’ll welcome corrections on any of this – it’s a new subject to me and it’s not my area of focus.)
The Directive gives citizens of European countries the right to get services in another country. What was not said from the stage was this: when you get care abroad and come home, you only get reimbursed at your home country’s rate.
Greece is in an economic disaster, and prices are predictably low – “a small fraction” of prices in other countries, I was told by two different people. You’re still responsible for the difference. So, boom: you’re right back to where the only solution is to have private insurance for care beyond what your home government offers.
But if you can afford private care at home, who needs to go abroad? It ends up only being a benefit for the people who don’t need it as much. (Greece has 28% unemployment – comparable to America’s Great Depression 80 years ago.)
Hence the quote above, directed at a government official: “You are out of touch with reality: look downward, at the lower parts of society!”
That was the woman with the brain tumor child.
The e-patient takeaway
As I said above, this isn’t my area of focus – I talk mainly about patient engagement in the clinical encounter. But Let Patients Help does touch on money – the section “Ten Ways to Let Patients Help” includes these:
5. Let patients help control the cost of care
6. Let patients vote on what’s worth the cost
7. Let patients use their informed shopper skills
And here we saw a big room of patients engaging in understanding the rules, to be responsible for getting what they need. So I’ll comment:
The real issue I witnessed is that if health policy people aren’t in touch with citizens’ street reality, they can’t possibly serve those citizens – and they probably won’t be able to explain the policy clearly. So the truth – “what we just heard doesn’t actually pay for much” – was said by someone in the audience, and the rest of the audience got mad. And the policy people were surprised.
Last night before the conference Kathi Apostolidis said she learned long ago that it’s very important for activists to get involved very early in policy, because after the ship leaves the dock it’s hard to change its course.
How often do we have to say it?
- Involve the ultimate stakeholder in everything – including difficult trade-off decisions. Don’t assume you know what the ultimate stakeholder would prefer, in difficult times.
- Patients – get involved proactively! Don’t wait to be asked. In an earlier session Nikos Dedes recalled the AIDS movement thirty years ago: stand up and say what you want! Don’t depend on policy people to see things from your point of view.
Mighty Casey says
Delighted to hear that even in the EU there are silos, since from this side of the pond healthcare access in Europe can seem so much more comprehensive and all-in than it is here in the good ol’ USA.
Healthcare decision-making must include patients, from the ground level to the policy-making C-suite. The days of the grownups talking to each other over the inert/supine/compliant form of the poor little patient are over. NOT including patients means accepting the risk of rotten outcomes. Who needs more of that? None of us …
e-Patient Dave says
Casey, make no mistake about it – the Greek economy is a disaster, and after a massive whole-country bailout (the WHOLE COUNTRY, not just one evil bank at a time, like we had), there are tough austerity measures in place, imposed by those who bailed them out. One is that the absolute *cap* on government funding of drug purchases is 2 billion euros for the whole year, period.
With 11.28 million people, that’s €177/person, less than $20/month, absolute cap on prescription benefits. And that’s in a country with 28% unemployment.
It’s clear that there is no monolithic “in Europe,” to a much greater extent than there’s no single “in America.” And as you can imagine, the whole idea of “decision making” takes on a different tenor when there’s not much of anything to go around.
You want messy? Compare that €2bn cap with these numbers, from Wikipedia:
On 2 May 2010, the Eurozone countries and the International Monetary Fund (IMF) agreed on a €110 billion bailout loan for Greece, conditional on compliance with the following three key points:
The payment of the bailout was scheduled to happen in several disbursements from May 2010 until June 2013. Due to a worsened recession and the fact that Greece had worked slower than expected to comply with point 2 and 3 above, there was a need one year later to offer Greece both more time and money in the attempt to restore the economy.
In October 2011, Eurozone leaders consequently agreed to offer a second €130 billion bailout loan for Greece, conditional not only the implementation of another austerity package (combined with the continued demands for privatisation and structural reforms outlined in the first programme), but also that all private creditors holding Greek government bonds should sign a deal accepting lower interest rates and a 53.5% face value loss.
That’s €240 billion poured in – that’s €20,000 per person.
And note that as in Wall Street’s fiascos, pretty much none of the individual patient/citizens in the room were involved in the disastrous decisions. They’re just left holding the bag, with sick family members among the sufferers.
Now, as you know, my usual discussions are not about who should pay for what. My whole point, always and tomorrow, is that no MATTER who’s paying for what, it’s in a patient’s best interest to do what they can to learn about their condition and speak up about what they want.
So that’s what we’ll talk about Saturday morning.
I was wondering whether you Americans, would find interesting our discussion about the Directive. It is indeed complicated, I bet that besides a handful of people in the room, no one really understood what was it about. It was a boring legalese discussion to which the audience would not have shown interest, unless Dorina and Nikos Sklikas had not insisted on commenting on the fine print…That was what awakened the till then patient audience..
e-Patient Dave says
> It was a boring legalese discussion to which the audience would not have shown interest,
> unless Dorina and Nikos Sklikas had not insisted on commenting on the fine print
That was clear – yes. Do you have any idea how that happened – how people got one idea and didn’t understand the REAL impact? Was it not presented clearly when it was first enacted? Was it sneaked past people?
Personally it seems to make sense that if I go “out of network” (to use the American term) my reimbursement would be the same as if I stayed at home, because that means the insurance benefit ($ amount) remains the same. But what makes sense is a separate question from what a regulation actually says, which in turn is different from what people were told.