Category: Uncategorized

ACOR, Health 2.0 in the US & Europe: Gilles Frydman tells all

Jan 1, 2010

By Matthew Holt

Gilles Frydman is one of the leading ePatients. He started and runs ACOR (Association of Cancer Online Resources) and has discussed the role of engaged patients with rare diseases at the last few Health 2.0 Conferences. We’ll be hearing more from Gilles in the US this year, but first we’re inviting him to present at Health 2.0 Europe. His twitter name (@kosherfrog) reveals Gilles’ ethnic and national background, so we thought he was a very appropriate person to discuss both the future of online patient activism, and the Health 2.0 scene in the US and Europe.

Matthew says: Gilles, you’re best known for the ACOR list-servs which now see over 1.5 million emails a week go out in around 150 different cancer groups. Can you tell us how it started?

Gilles says: In 95 my wife was diagnosed with breast cancer. She came home and told me of the diagnosis and I immediately went on the Net to find information about the disease and treatments

Matthew says: And what did you find?

Gilles says: Within 30 mins I had the BREAST-CANCER list and joined it. I didn’t follow protocol and jumped right in and asked about the diagnosis and what we were told was the treatment for it. Within 2 hours I had enough info to call back the surgeon and tell her we were going for a second opinion and that we would wait for the surgery she had told us was absolutely necessary. She “fired us” on the spot. Because we went for a second opinion!

Matthew says: I’m not surprised. Probably might happen today too

Gilles says: But as a result of what I was told my wife didn’t have chemo. She didn’t have a radical mastectomy. She didn’t have brain, liver and bone scans. All of which would have been TOTALLY USELESS for the type of BC she was diagnosed with. Thanks to informed patients, she just had a lumpectomy and radiation. No piece of cake but MUCH LESS than chemo. So, that started me

Matthew says: So is that a typical interaction on ACOR?

Gilles says: YES. But ACOR can go into incredible depths. Not just pure info but also deep info mixed with profound human feelings

Matthew says: Can you give some examples

Gilles says: Just yesterday on one of the pediatric lists, a mother was writing about her son’s latest situation where all the doctors have now told them there is nothing more to be done. In short the woman writes about what can only be the worse possible situation for a mother, but she does so in an incredibly rational fashion.

Matthew says: What’s the scale of ACOR activity now?

Gilles says: ACOR is a little under 60K active subscribers, over 165 groups, from 60 members to 3,000. Some of the groups generate close to 200 messages a day

Matthew says: What does it cost to run ACOR in both money and time, and how is it financed?

Welcoming immigrants and robots to fill the nursing shortage

Dec 30, 2009• 36

By DAVID E. WILLIAMS

David E Williams

In a report this week, Nursing crisis looms as baby boomers age, CNN Money repeats a well-known story: there are unlikely to be enough nurses to take care of people as they age. Nursing schools can’t keep up with the demand and trouble awaits. We’ll face a shortage of 260,000 RNs by 2025, we’re told.

I don’t really believe it’s such a big deal.

There are two good solutions to the problem, and they aren’t mutually exclusive:

Increase the recruitment of nurses from abroad
Substitute technology for laborContinue reading…

Making A List and Checking It Twice

Dec 29, 2009• 33

By MERRILL GOOZNER

Goozner Allow me to call readers attention to an article in the latest issue of the New England Journal of Medicine that calls on medical specialty societies to make lists of the five most wasteful practices in their sub-specialties and develop programs to educate their colleagues about how to cut back on these wasteful practices.

Howard Brody, who heads the Institute for Medical Humanities at the University of Texas Galveston Branch Medical School, points out that most stakeholders in health care reform — the drug companies, the insurance companies, the medical device companies, taxpayers, Medicare beneficiaries — have been asked to give up something to insure the uninsured. But physicians?

Although major professional organizations have endorsed various reform measures, no promises have been made in terms of cutting any future medical costs. Indeed, in some cases, physician support has been made contingent on promises that physicians’ income would not be negatively affected by reform.Continue reading…

The Coming Clash over “Cadillac” Plans

Dec 27, 2009• 46

By MERRILL GOOZNER

Goozner Now that the Senate has passed its version of health care reform along partisan lines, let’s look ahead to the single biggest issue that will draw the most heat in conference: The tax on so-called “Cadillac plans,” the largest revenue raiser in the Senate legislation.

As regular readers of this blog know, I consider it ill-considered and unfair, a tax on people stuck in expensive plans because they belong to groups with older and sicker beneficiaries who use more health services; small groups generally; or who live in areas with expensive delivery systems. The idea that taxing those plans will somehow encourage people to reduce their utilization is wishful thinking that ignores who actually makes health care decisions — doctors, hospitals, drug companies, and other providers.

It also ignores why most people use health care — it’s because they are sick. The latest research shows less than 4% of the higher cost of some plans is due to extra benefits. Most of the rest is due to the higher claims of people in those more expensive plans, or the fact that the plans cover people in areas with expensive medicine.

Is it Unconstitutional to Mandate Health Insurance?

Dec 27, 2009• 73

By MARK HALL

Mark-a-hall-150x150 Is it unconstitutional to mandate health insurance? It seems unprecedented to require citizens to purchase insurance simply because they live in the U.S. (rather than as a condition of driving a car or owning a business, for instance). Therefore, several credentialed, conservative lawyers think that compulsory health insurance is unconstitutional. See here and here and here. Their reasoning is unconvincing and deeply flawed. Since I’m writing in part for a non-legal audience, I’ll start with some basics and provide a lay explanation. (Go here for a fuller account).

Constitutional attacks fall into two basic categories: (1) lack of federal power (Congress simply lacks any power to do this under the main body of the Constitution); and (2) violation of individual rights protected by the “Bill of Rights.” Considering (1), Congress has ample power and precedent through the Constitution’s “Commerce Clause” to regulate just about any aspect of the national economy. Health insurance is quintessentially an economic good. The only possible objection is that mandating its purchase is not the same as “regulating” its purchase, but a mandate is just a stronger form of regulation. When Congressional power exists, nothing in law says that stronger actions are less supported than weaker ones.

Voters Want Abortion-Neutral Health Care Reform

Dec 26, 2009• 9

By MARK MELLMAN

Mark-Mellman-resized A few months ago, I warned that some folks were attempting to misuse healthcare reform to restrict access to abortion. They have come a long way since then, endangering the vital struggle for healthcare — indeed, torpedoing reform is a key goal for many involved in this effort.

Americans oppose using abortion as a means of derailing health care reform and oppose using health care reform as a means of restricting abortion. The more voters find out about what is happening on Capitol Hill with respect to this issue, the angrier they are getting, because language inserted in the House bill will take away coverage for abortion that tens of millions of women already have.

Taking away existing coverage not only violates the public will, but also does fundamental violence to Democrats’ explicit promise that if you like what you have, you will be able to keep it.

States Should Have Flexibility to Develop Own Health Reform Plans

Dec 26, 2009• 14

By MAX BARTLETT and JOSE AGUILAR

One issue has generated little discussion during the heated health care reform debate: whether states should have the right to develop their own approaches to universal coverage.

The Health Security for New Mexicans Campaign wants to see language included in the national proposal that gives states flexibility to develop their own approaches to solving rising health care costs and growing numbers of uninsured.

The focus of current health care reform proposals is to create “insurance market exchanges.” These one-stop-shopping insurance exchanges must offer consumers — primarily the uninsured — choices of different insurance products, including some type of public option. A less than robust public option is in the proposal passed by the House of Representatives. The Senate is in the process of negotiating an alternative to the House version.

Why buy insurers stocks, When the Obama health bill would bankrupt them?

Dec 23, 2009• 30

By DONALD JOHNSON

Don Johnson

On Monday, liberals sneered when insurers’ stocks rose, indicating that speculators thought ObamaCare (HR 3590) would be good for the big regional companies. But today several of the stocks are sinking, probably in response to University of Chicago Professor Richard A. Epstein’s op-ed piece in The Wall Street Journal, “Harry Reid turns insurance into a public utility; the health bill creates a massive cash crunch and then bankruptcies for many insurers.”

Here are charts for AET, CI, CVH, HS, HUM, UNH and WLP. Click on a chart for more information. The stocks that are sinking serve the individual and small group markets. Those that are rising are less invested in those markets, I think.

Now, the big companies might benefit from having smaller insurers that serve individuals and small employers bankrupted. But they would be crushed by new regulations and price controls that would not allow them to make profits. Nothing in the bill says insurers should be allowed to earn market returns. That means they’re as likely to go bankrupt as the smaller insurers.

Epstein’s impact graph:

The perils of the Reid bill are made evident in a recent Congressional Budget Office (CBO) report that focused on the bill’s rebate program, which holds that once an insurance company spends more than 10% of its revenues on administrative expenses, its customers are entitled to an indefinite statutory rebate determined by state regulatory authorities subject to oversight by the Secretary of Health and Human Services. Defining these administrative costs is a royal headache, but everyone agrees that they are heaviest in the small group and individual markets, where they typically range between 25% and 30%, without the new regulatory hassles.

Equally important, Epstein writes, the bill would turn insurers into heavily regulated utilities without giving them the right to make market rate returns on investments, which is unconstitutional.

That the bill appears unconstitutional may be good news for insurers, but think of the uncertainty that investors in insurers will face for years as the courts take their time deciding the case.

How Will the Senate Bill Impact the Insurance Companies and Their Customers?

Dec 23, 2009• 6

By ROBERT LASZEWSKI

How will the Senate bill impact health insurance companies and their customers?

Even better, how will it impact a not-for-profit health plan–one with a reputation for being a “good guy” that continually wins the country’s top awards for member services and with historic profits of less than 1% of premium? And, one that is operating in Massachusetts–a market that has already been through much of this?

I will suggest that, in combination, these are three intriguing questions.

That is why I thought that the Harvard Pilgrim’s CEO’s recent post on their website was important. It is short, direct, and to the point. And, from everything I know, it is bang-on.

2009 Homeless Gift Guide

Dec 23, 2009• 4

By DOC GURLEY

Gurley This time of year, no matter what your worldview, religion or culture, it’s hard, as you hurry past the homeless huddled on the street, to not feel like Scrooge. Whether you’re taking your family to the Nutcracker, or pounding the pavement for a job yourself, walking past so many shivering mounds of human misery takes a toll on the psyche. Maybe your kids are tugging on your arm, asking why can’t something be done? Maybe you (like so many of us) just don’t feel comfortable handing out bits, or even wads, of cash. So what can YOU do to make a small difference? Here, folks, is the 3rd Annual Doc Gurley Homeless Gift Guide, with tips for how you too can safely give an affordable, life-saving gift to the neediest among us. Because when it comes to the homeless, that’s when, truly, The Giving Is Easy. And once you see how simple and rewarding it can be to drop a gift with a homeless person, be sure to pass the word along. Email friends, post your efforts on Facebook or MySpace. Put together gifts to have in your car for those awkward moments when you’re waiting at an intersection, staring at a scrawled “anything helps, even a smile” cardboard sign. It will change the whole tenor of your life.

Still feeling reluctant to throw together a homeless gift? Keep in mind that, when it comes to your health, studies show that acts of altruism benefit YOU – your life satisfaction, your overall level of contentment, and even how long you live. If altruism was a drug, it would outsell Viagra.