Something you can do – right now – about health care
Saturday, July 11 2009
This coming Friday – July 17th – the National Press Club is hosting an event called Health Care Reform: Putting Patients First. Naturally, the event involves precisely zero (0) actual patients.
It does, however, include a roster of notable med-bloggers: Kevin, MD; Dr. Wes; Dr. Rob from Musings of a Distractible Mind; Nurse Kim from Emergiblog; Dr. Rich from Covert Rationing – and was organized by Dr. Val of BetterHealth.
Keynoting the event will be Congressman Paul Ryan*, along with policy expert Robert Goldberg of the Center for Medicine in the Public Interest**. This is, to put it mildly, a rightward-leaning context. You can expect every effort to be expended in tying patients’ health care to the logic of the markets.
But let’s say your idea of health care reform doesn’t depend on giving more control of the health care system to insurance companies. How can you participate? For starters, you can go right now to the BetterHealth announcement and leave a comment. Tell them what you want from health care. Tell them what “putting patients first” really means. Seriously – right now: I’ll wait here.
…
Great. Thanks. The second thing you can do is go to the participants’ blogs, and drop comments there. Nearly all of the above-linked bloggers have posts about their participation; tell them what you want to hear them say.
Third, you might consider attending the event, if you are close enough. I’m going – not that I was invited, of course, but I’ll be making the trip anyway. If you can’t make it, trust that I’ll take notes and maybe ask questions – if my head doesn’t explode first – and report back on what I’ve learned. So: check back here a week from now to learn what “Putting Patients First” sounds like when patients are the last to speak.
*Congressman Ryan has made headlines for introducing the “Patients’ Choice Act” into the House of Representatives. The core of this bill is that you can use a $2910 tax credit to purchase the insurance your employer used to provide through a state exchange that guarantees you access to insurance through a variety of mechanisms that have never worked before. Basically, the PCA keeps government out of health care by putting state government in charge, without giving the states any real authority to do anything helpful. See the difference?
**CPMI is funded in part by the pharmaceutical industry, solicits corporate donations, doesn’t disclose those donations, and has a who’s who of right-wing think tanks on its advisory board.
Duncan,
If it makes you feel any better – and I’m not sure it should – for the past decade the only direct interactions I’ve had with the healthcare system have been as a patient, and I expect that arrangement to continue to the bitter end. But I take your point and it’s a good one.
If you attend, I’d love to meet you. If there were (a lot) more patients like you, covert healthcare rationing would dry up and blow away.
Rich
The Covert Rationing Blog
Duncan. First, I’m sorry that you are sick. Second, if you respect these doctors enough to have them on your blogroll, why are you trying to sabotage them from speaking out?
Rich – it does and it doesn’t. I admit I’m sometimes a little overwhelmed by your blog, and not sure what to make of it. I’m curious to hear what you’ll say – and I’ll introduce myself if I get a chance.
Just Sayin’ – I am trying to encourage patients to talk to medbloggers about their perspectives on health care reform. How is that sabotage? How am I trying to prevent them from speaking out? And why is it more important that medical professionals get a chance to speak out, when patients have no such opportunity. If I achieve nothing else with this post, I’ll at least be driving a little traffic to their sites – so, for Pete’s sake, don’t tell me I’m doing these folks any harm.
Duncan,
Glad you’ll be attending the event. Make every effort to find me and introduce yourself – it would be great to meet you.
As for the political context of the event, I think you’ve noticed that the medical blogosphere tends to be generally politically moderate, and the bloggers attending represent that.
I think that you’ll find that our remarks will be independent of the whomever is sponsoring the event. Mine will assuredly be.
Thanks,
Kevin
Hey Duncan,
I’m planning to attend as well. It will be nice to meet you. As for the trending of the chosen medbloggers toward the “right,” I agree with you. I also agree with Kevin that those in attendance will likely say what they believe regardless of sponsorship of the event. Now I have some reading to do so that I can think of some intelligent questions to ask.
I will echo what Kevin said. I made sure that, despite the fact that CMPI was hosting, I would be free to say things that reflected my opinions, not theirs. You know that none of us wish to be a shill for any one political opinion. I asked Val that specifically before I accepted.
Having you there will be a treat, and I would love to hear what your opinion is on this. I personally don’t see what you suggested as being sabotage; I see it as making sure the patients’ voice is really heard.
I think it’s a fair question to ask if those participating are being paid for their appearance, or if they are receiving the “standard” comped nice hotel room and free airfare? I ask these questions not to impugn the integrity of those attending, but to point out that subconscious changes in behavior when physicians accept free gifts from drug companies has been proven to happen; if it didn’t happen, drug company reps wouldn’t still be handing out the free stuff. See:
http://www.scu.edu/ethics/publications/submitted/morreim/prescribing.html
http://www.nytimes.com/2009/04/29/health/policy/29drug.html
http://www.publicintegrity.org/investigations/pentagon_travel/articles/entry/1409/
As for health care reform, the real problem is that we have an insane system when it comes to the treatment of chronic illnesses. Insurance bureaucrats–many of whom own stock options in the companies they work for–spend their days trying to figure out how to not pay for maintenance care for the chronically ill. This care is expensive, but it doesn’t break the bank. The result is they drive the chronically ill out of the insurance market with purges and high prices (see Bill Moyers this week for proof of that). Then patients stop taking their medications (see: http://www.upi.com/Health_News/2009/06/19/Many-MS-patients-not-filling-prescriptions/UPI-31731245388651/).
The result is illnesses spin out of control. The patients loses the job and their insurance. They inevitably end up in ERs with terminal forms of their illness. Hundreds of thousands of dollars are spent trying to make up for the decision to not pay for the ten thousand dollars of maintenance treatment which was denied in the first place. It is insane; the economics of this are backwards.
The problem is that everybody needs to give up somethings. Doctors are going to have to give up compensation because there will be less big ticket procedures. Patients are going to have to give up the idea that life prolonging measures in terminal illnesses are always a good thing. Insurance companies are going to have to give up some, though certainly not all, of their profits–a solid public option which doesn’t rescind and pull various other stunts to purge the sick will be required for that. Lawyers are going to have to give up the ability to sue every doctor in sight. Medical schools are going to have to give up the ridiculous tuition inflation that has occurred over the past 15 years. Drug companies are going to have to give up the ability to set their own prices without any real negotiation with the public option.
In short, for a good bill to happen, nobody will be thrilled. But a good bill will increase up-front access to maintenance care while eliminating wasteful end of life treatments (feeding tubes in Alzheimer’s patients, dialysis in patients who do not qualify for kidney transplants and who have less than 3 months to live, chemo and surgery for stage V cancer patients, etc). It’s why there is so much shouting in Washington now–nobody wants to do the heavy lifting required to make our system better.
That’s just called politics as usual.
Hi Duncan,
Just to be clear – the intent of the press conference was to give medical bloggers an opportunity to speak directly to politicians inside the beltway about their healthcare reform concerns. I invited medbloggers who have been the most outspoken about reform, and who have the largest reach – but sadly I couldn’t include as many people as I’d like due to budget constraints, etc.
The conference needed a name – so as I thought about what medbloggers really wanted to communicate, it seemed to me that we cared most about putting our patients first, and that this message often got lost in the “who’s going to pay” arguments.
The spirit of the conference is about expressing the need to preserve the patients’ right to choose (along with their providers’ advice and input) the best path for their care. It was never my intention to exclude patients from the conference in any way – patients and physicians/nurses are each others best allies, and we need to stick together!
I will see if I can include a patient medblogger to add some balance – my apologies for any upset that this might have caused!
Yours in the struggle for quality, affordable, healthcare for all,
Val
P.S. I can assure you that the bloggers’ opinions are (and will be) their own and I did not try to influence them in any way.
Thanks all for the comments. I’m looking forward to meeting some of you in DC later this week. I’ll figure out a way to make myself visible.
Dr. Val – thanks for the clarification, and thanks for organizing this even despite its – ahem – lackings. I would point out just one thing: as far as I can tell, patients do not have the right to choose the best path for their care. Health care reform that would do that is something I could get behind 125%, but we can talk about what that should look like in practice.
I appreciate the comment Val, and I do hope you find patient bloggers to participate that represent a different point of view.
That said, you haven’t answered the question I posed above. Are those who are participating in this event being paid for their appearance, or is their travel being comped? If so, was funds raised from the pharmaceutical, health insurance, and hospital industries used to pay for the appearance fee, travel, or the cost of renting out the national press club?
Those are very important questions which should be answered.
And I totally agree with Duncan. Many patients don’t have a choice. Many are forced to not seek the treatments they need by the fact that they are uninsured or have poor coverage.
Hi Dr. Val,
Where is the invite for Duncan to sit on that panel? He is clearly qualified as one of the most politically savvy patient bloggers out there. Whereas many patient blogs simply gripe, Duncan has built wonderful bridges with lots of the panelists despite his difference in opinions. He’d be a fantastic addition, plus you wouldn’t have to answer his question as an audience member of why no patients are on the Putting Patients First Panel.
But just in case you don’t issue a last minute invite for him to participate on stage, can I be in charge of designing his costume that will make him identifiable to the large crowd of people who are excited to meet him?
Best,
Kairol
Too often the patient community is left out in discussions of health care reform and it’s time for a change. As luck would have it, this Friday’s bloggers event has the identical name as a National Health Council (NHC) campaign dedicated to Putting Patients First in health care. Made up of more than 100 national health-related organizations, the NHC’s core membership includes 50 of the nation’s leading patient advocacy organizations.
Our Campaign to Put Patients Firstis a nationwide initiative dedicated to mobilizing people with chronic diseases and disabilities to achieve effective and affordable health care – health care that meets their personal needs and goals. The Campaign is focused on 5 core principles (http://www.nationalhealthcouncil.org/forms/5-healthcare-principals.pdf) for Putting Patients First ® which will guide our efforts to improve health care in this country.
We encourage you to check out more information on the Campaign to Put Patients First at http://www.nationalhealthcouncil.org/pages/patients-first.php. We truly believe that it will be the united patient voice that makes a difference in this year’s health care reform debate. In the spirit of this Campaign and in an effort to represent the patient community as you recognize is essential, the NHC will be attending this bloggers event.
National Health Council – Thanks for the comments and heads-up. I would, however, be a lot happier about your organization if its membership didn’t include more than a dozen pharmaceutical companies and PhRMA itself. I have already written extensively about pharmaceutical money influencing advocacy agendas for patient groups, rather than letting patients speak for themselves. I’m not convinced NHC is any improvement on the issue.