my fundraising pitch: run for the cure

Dear Friends and Family,

This year, I am running/walking in the Run for the Cure in support of the Canadian Breast Cancer Foundation and I'm writing to ask if you'd be willing to make a donation.

As you know, this is an issue that is very personal for me. In November 2006, when I was told that my breast cancer had spread to my liver, I knew no one who had survived this kind of diagnosis. Even my oncologist reluctantly told me that I had “years not decades” to live.

But my response to treatment was immediate and dramatic – by June 2007, there was no longer any sign of cancer in my body. As I write this, I am still in remission. I'm also still in treatment, as we don't know enough about what happens when metastatic breast cancer disappears to make an informed decision about stopping.

There is no question in my mind that I am alive today because of the kind of cutting edge research that is funded by the Run for the Cure and the Canadian Breast Cancer Foundation (CBCF).

In November 2007, I attended a conference that was funded my the CBCF for younger women affected by breast cancer. In one of the plenary sessions, I stood up and asked how many women attending the conference were also living with metastasis.

There were dozens of us. For the very first time I internalized the idea that having stage four breast cancer need not be a death sentence. It's not an overstatement to say that moment changed my life.

I support the Run for the Cure because I don't want any woman with breast cancer to feel alone.

I support the Run so that more of us with stage four can go into remission and even walk away from treatment with confidence.

I support the Run so that no woman need ever fear breast cancer again.

And I'm running with Team No Pink for Profit because I hate the corporatization of breast cancer. Our team name makes me feel a little bit subversive. I'm so proud to be the captain of this team comprised more than 30 women and we're the top fundraisers for our region. It gives me great pleasure to see our team name scrolling on the front page of the regional web site.

Can you help by making a donation? Any amount would be appreciated.

You can click on this link to learn more about me and make a donation: http://www.runforthecure.com/site/TR/RunfortheCure/Ontario?px=1268119&pg=personal&fr_id=1101

Thanks so much!

Laurie

Alzheimer's Disease: Does Disease Management Help COPE?

The Disease Management Care Blog always thought that Alzheimer’s disease is one of those chronic conditions that warrant a full-course press of care management. That's because for community dwelling Alzheimer's patients, every day at home is one less day in a skilled nursing facility. Optimizing the home environment, providing support services for early recognition and management of problems and, most of all, family-caregiver support seem to be the ingredients necessary to keep these patients away from nursing homes. It may cost a lot, but carpet bombing these patients with home and telephonic support services should work, right?

Which is why the DMCB looked at the Care of Persons with Dementia (COPE) trial results reported in the Sept. 1 issue of JAMA. Using its on-line access option, it read that 209 persons with dementia (average age 82 years with a mean Mini Mental State Examination score of 13 out of 30 points – indicating the dementia was quite advanced) and their caregiver family members were recruited using ads and notifying nurse agencies about referring patients to the study. The patients were randomly assigned to COPE (N=102) or to a control group (N=107). The COPE intervention consisted of up to 10 family sessions with an occupational therapist to develop problem-solving skills and tailor the home environment to assist with activities of daily living, as well as a face-to-face and a phone call session with an advance-practice nurse for caregiver education and patient health screening. The authors estimated that the average cost of the intervention was $537. In contrast, the control group received three cheap scripted phone calls of 20 minutes’ duration that offered counseling and arranged for the mailing of educational brochures.

Four months later, individual patient scores in both groups drifted up and down, but statistically significantly more patients in the COPE group had gains in functional independence. Unfortunately, depending on scale that was used, the average gain was quite small or moderate. What's more, direct measures of agitation or quality of life did not change.

There were a lot of drop-outs also. 12% of patients were out of the study at 4 months (including 3 deaths and 2 nursing home placements in the COPE group, vs. 6 deaths and no nursing home placements in the control group).

When the measures were repeated at nine months, any differences in functional independence vanished. An additional 17% of patients dropped out of the study (including 5 deaths and an additional 3 nursing home placements in the COPE group, vs. 7 deaths and 5 nursing home placements in the control group).

The only good news was that, when family members were surveyed about the benefit of the program, the COPE caregivers were more likely to agree that they had a personal benefit, that there was better understanding of dementia and that care giving was easier. They were also more likely to agree that it helped them keep the patient at home.

The DMCB is disappointed but unsurprised. It’s notoriously difficult to alter the “trajectory” of Alzheimer’s disease. While the authors argue that their results are similar to the improvements seen in Alzheimer's drug trials, that’s not saying much: they also typically result in small to modest temporary improvements. While caregivers seemed to higher levels of confidence and satisfaction, both the COPE and control group patients had more than their fair share of admissions to nursing homes.

Four DMCB closing thoughts:

1) the study population had a high burden of disease (low Mini Mental scores) with relatively advanced dementia. It wonders if the intervention would have worked for patients with less dementia?

2) There seemed to be little in the intervention that included the patients' principal physicians. Without their active engagement, was this study destined to have disappointing results? This is a lesson that was learned by the disease management industry years ago. If COPE were part of a Patient Centered Medical Home, would it have fared better?

3) Relatively speaking, $537 per patient is not a lot of money. From the point of view of an insurer, the spend doesn’t appear to result in any meaningful patient improvement. Given the family-caregiver satisfaction, however, perhaps families would be willing to pay for this service out of pocket.

4) The clock is ticking on the U.S. Alzheimers’ time bomb. If medications and high touch approaches like this don’t work, what are millions of families with aging baby boomer parents going to do in the coming decades?

Reducing ER Utilization? More Likely With Disease Management

Even though this literature says otherwise, the Disease Management Care Blog always thought emergency room (ER) physicians were a cranky lot. Thanks to being largely salaried, buffeted by ER overcrowding and serving on the front lines of a system in crisis, who can blame them for feeling as if they're being taken advantage of? To hospital administrators, ERs and their docs are a large fixed cost to be mitigated by high patient throughput and mining it for remunerative hospital admissions. No wonder they're advertising wait times.

Which is why the DMCB thinks it can always count on ER physicians to point out reasons why ERs are being overused. Case in point is this hot-off-the-presses study that was discussed at a recent Health Affairs Briefing attended by the DMCB. Drawing on yearly Federal survey data from 2001-2004, the authors calculated that Americans currently experience 321 outpatient visits per 1000 people per month - a considerable increase compared to 1961, when were about 250 visits per thousand. About one third - or about 107 visits per 1000 per month - were for "acute care," defined as also including chronic disease flare-ups. Nationwide, ER docs, who account for only 4% of the nation's physician workforce, handled 11% of all ambulatory acute care visits. Two thirds of these visits occurred on weekends or after office hours.

Quoting literature that shows that most primary care practice is underfinanced and filled with chronic care follow-up visits that take up the entire day, the authors reviewed the possibility that Patient Centered Medical Homes, Accountable Care Organizations, urgent care clinics and retail clinics will reduce ER utilization.

That's a big maybe, says the DMCB. It's difficult to define just what constitutes an emergency, and the HMO backlash resulted in the open access to ERs with a prudent layperson legal standard. Smart managed care organizations have been working on this problem for years and haven't made much progress. In the meantime, enterprising hospitals know ERs can be a cash cow. Last but not least, the finding that 4% of the physician workforce can handle 11% of all ambulatory acute care visits suggests they're giving the U.S. a great deal. The likelihood that this mix of policy, reform, financing and politics will have any impact on current ER utilization rates in the near future is nil.

But, the DMCB would like to point out one area of research that, strangely enough, went unexamined by Health Affairs' authors, reviewers and editors. There are a group of interventions that have been shown to reduce unnecessary ER utilization for acute exacerbations of disease that were included in the analysis above. They're collectively called disease a.k.a. care population-based management. Not hard-to-find examples can be found here for diabetes, here in heart failure (where ER visits typically lead to hospitalizations), here for COPD and here for asthma. '

Sure, the literature isn't perfect, but the DMCB says it's better than the current science supporting PCMHs or ACOs when it comes to ER utilization. As noted previously, modern Ver. 2.0 disease management promises to be part of the right interlocking mix of services that will include ACOs, medical homes, health information technology, physician payment reform and value-based insurance designs. The DMCB is very optimistic that the Feds, States, policy makers, Departments of Insurance will eventually discover that, especially if they don't limit their reading to the traditional print media dominated by an academic perspective.

Where To Put All That Money......

The Disease Management Care Blog figured Don Berwick would keep a low profile. Yet, thanks to this update from Kaiser Health News, the DMCB caught up with with the healthcare brouhaha in the body politic. In addition to declining interview requests for interviews with the Boston Globe, Dr. Berwick's been busy managing the billions of dollars of research/demo hyperalimentation for our academic-industrial complex. The tone of the Globe article suggests that Dr. Berwick's Boston groupies are already measuring the drapes for their new research office wings.

Yet, assuming Dr. Berwick is interested in eventually securing a U.S. Senate confirmation, the DMCB calculates it would be politically savvy to keep most of the Affordable Care Act booty out of Massachusetts. It won't take much (relatively speaking, hundreds of millions is not a lot) to appease his posse and make Sen Scott Brown (R-MA) think twice about voting against him. The smart money says to swing the billions toward the States with potential Senate allies in his upcoming confirmation hearings: moderate Republicans and wavering Democrats.

Which is the problem. Despite Dr. Berwick's reputation for scientific excellence, he'll inevitably have to struggle with conflicts of interest - between allocating precious national treasure on the basis of scientific merit and granting pork on the basis of holding onto political power. Welcome to their world, Dr. B.

The DMCB predicts this will be one of the more interesting stories of the fall health reform news cycle. Where will all that money go and how will a sympathetic news media, Dr. Berwick's allies, his critics and, most importantly, the U.S. Senate respond? Stay tuned.

A Competent Administration? Is That All It Takes?

To get an idea of just how complicated the next three years of health reform will be, check out this highly readable article by Christopher Jennings and Katherine Hayes appearing in the latest New England Journal of Medicine. While past civics teachers taught the gullible Disease Management Care Blog that the purpose of Federal law is to ..... well, set law, the Affordable Care Act (ACA) gives the Administration an astonishing amount of leeway in its interpretation and execution. While the Journal authors describe the leeway in the context of an enlightened, righteous and competent government determined to do good for its citizens, the DMCB instead gained an appreciation of how easily things could go wrong.

Not only is there the matter of having to constantly manage the grumpy opponents on the right and the left, the Administration is likewise vulnerable to under or overdoing it in the setting up of insurance exchanges, providing tax credits as well as other forms of financial assistance, defining the "grandfathering" of existing health insurance plans, enforcing the individual mandate and defining the composition of the medical loss ratio. Thanks to the potential of Congressional meddling, budgetary shortfalls, bureaucratic inertia, government employee incompetence, unintended consequences and political jockeying, the thousands of moving parts that make up the ACA could seize up in myriad ways - no matter who controls Congress or the White House - in the coming years.

Addendum: For a discussion of the definitional, legal, regulatory and political complexity of our brave new world of health insurance reform, see what Uwe has to say.

The Latest Health Wonk Review Is Up!

Hank Stern. Here and Now. Insure Blog. Good stuff. Enjoy.

Dog Whistle Politics and the Repeal of the ACA: The Endgame is the Privatization of Medicare?

Emboldened by the further erosion of pubic support for health reform, it seems opponents have become more brazen in their plans to repeal the Affordable Care Act. As the politically naive Disease Management Care Blog understands it, they're planning a two step roll-back. Step 1 is to take control of Congress at the midterm, followed by Step 2, when Mr. Obama is replaced in 2012 with a politician sympathetic to their cause. In the meantime, the DMCB expects the opposition to pursue a scorched earth policy and do everything it can to hobble the ACA. This includes defunding the bill, meddling in the formulation of regulations (if the Dems can do this, so will the Republicans) and relegislating parts of the bill.

The DMCB says watching this partisan overreach unfold is for amateurs. The keen-eyed DMCB will instead be tracking a fundamental endgame far more pernicious than simply strangling the ACA in its crib. The DMCB will be on the look out for the re-runs of Republican mischief such as cancellation of the Department of Education, tax cuts for gazillionnaires, the OK of caribou-killing Alaskan oil drilling, the OK of flounder-killing Gulf drilling and, worst of all, the privatization of Medicare.

As a physician, the DMCB has learned use symptoms to look out for disease. When it comes to health reform, the class of symptoms the DMCB will use to monitor the disease of privatization will be dog whistle politics. It's defined as the use of otherwise innocuous terms that have an important meaning for an political-insider knowledgeable base (a good example is here).

In the coming weeks and months, the DMCB scouring press conferences, speeches, press releases and position papers that use dog whistle terms like "high risk pools," "reinsurance," "individual health savings accounts" and "patient choice." Come to think of it, the DMCB will also examine closely examine any statement that includes "The American People," "common sense," "listening," and "restore Medicare."

Be afraid. Be very afraid.