PBS Frontline on Medical Care

[Dignan]

http://www.pbs.org/wgbh/pages/frontline/doctor-hotspot/

I thought this was interesting. It focuses on a doctor in Camden, NJ who is trying to better care for the sickest patients. It also shows how the more complex a medical problem is, that the more likely the system breaks down.

(I'm sure we can all relate to going to multiple specialists and getting only conflicting recommendations or confusion that doesnt help anything)

It also notes how it is not in the hospital or medical communities financial interest to see patient visits and costs go down and; therefore, this guy doesn't get help from the medical establishment in his efforts.

I know I've often felt that epilepsy research is nearly all geared towards producing new medications because that makes money. Research geared toward correcting the problem permanently would take money away from drug companies and doctors and it is not their interest to see people get better.

To me, this is a big problem, the for-profit medical system does not work to see people healthy, but rather to make money.

 

[Nakamova]

I do think the current medical model is very flawed, and you are absolutely right about the bias toward drug-based research. But there are researchers and doctors out there who are interested in finding non-medication treatment approaches to epilepsy. You might be interested in CURE (Citizens United for Research in Epilepsy) http://www.cureepilepsy.org/home.asp

This is a recent statement by the Chair of CURE:

As Chair of CURE and a member of the epilepsy community, I am at once dismayed and hopeful as we publish our first annual State of Epilepsy Research Report. In the pages that follow, you will find our first attempt to assess our community’s collective progress toward a cure for epilepsy.

I am dismayed because as I read through this report, the enormous challenges we face in advancing this field crystallize. The data confirms that funds for epilepsy research—from government, industry, and private sources—are totally insufficient given the magnitude of the problem and the status of our progress in the field. We know now that the vast majority of funding goes to incremental improvements in anticonvulsant medications (which are largely ineffective for about 40% of patients) rather than to uncovering underlying mechanisms that may lead to cures. We also know that the number of basic researchers in epilepsy is declining and that those involved have been less collaborative than their colleagues in other neurological disorders.

But, we also have great reason for hope. While our challenges are significant, I have every confidence that, as a community, we have the will and determination it takes to make meaningful progress toward defeating this disease. We are finally making strides in our efforts to communicate well beyond our community the critical importance and urgency of the need. This gives me tremendous faith that together we can turn the challenges detailed in this report into opportunities to make a real difference for our patients and loved ones.

It is within our power to make this happen, but we must act now. Lives are being ravaged and lost every day that we delay. I have tremendous hope that these reports in coming years will tell the stories of great progress toward our common goal—a cure.

Here is a rundown of research CURE is supporting: http://www.cureepilepsy.org/research/current.asp

 

[Dignan]

Yes, I've read that before. I've also read (although I can't remember where at the moment) that roughly 75% to 85% of all epilepsy research funds go to pharmaceutical research, which I feel is pathetic.

 

[NeuroNotes]

It's great to see awareness threads like this. Appreciate the informative links, and I concur with you both. Many of the real researchers and scientists, who haven't sold out to the almighty dollar, either have to raise funds, or fund studies out of their own pockets. They also catch heat if they don't follow status quo. It's encouraging to see non-profit organizations such as CURE.

A quote from the doctor mentioned in OP:

"What I knew from my office is that I'm paid to go from room to room to room as fast as I can, and the faster I go from room to room to room, the more money I make. When I slow down and I get involved in a complex case, I may as well hand money over the patient. I lose money. So that's a terrible model of care."

Their brains are (trained) wired to fire for dopamine reward based on profit, and the more profit, the more dopamine reward. Dopamine is a highly addictive neurotransmitter. Studies conclusively show that too much of it (dopamine) can lead to certain negative behaviors and risk taking. Anything to get their fix, and at the cost of much suffering to others.

This was in the headlines this morning:

FDA finds drug research firm faked samples, documents
Inspections uncovered misconduct, violations at a Cetero facility in Houston Reuters​

"Drug companies that had medicines tested by contractor Cetero Research might have to reevaluate results, U.S. regulators warned after the firm was found faking documents and manipulating samples.

The Food and Drug Administration said on Tuesday two 2010 inspections, an internal company investigation and a third-party audit uncovered "significant instances of misconduct and violations" at a Cetero facility in Houston.

The Cary, North Carolina-based firm does early-phase clinical research and bioanalytics for a number of drugmakers. The pharmaceutical companies can then use those studies as supporting evidence in drug approval applications to the FDA.

"The pattern of misconduct was serious enough to raise concerns about the integrity of the data Cetero generated during the five-year time frame," the FDA said, warning drugmakers they might have to repeat or confirm any studies Cetero did in support of their applications between April 2005 and June 2010.

It remains unclear which drugmakers have used Cetero's services to apply for regulatory approvals and the FDA is asking companies to identify such instances. The regulators said the measure is precautionary and the safety and efficacy of drugs already on the market are unlikely to be affected.
The FDA inspected Cetero in May and December last year and found falsified records about studies.

Specifically, in at least 1,900 instances between April 2005 and June 2009, laboratory technicians identified as conducting certain studies were not actually present at Cetero facilities at that time, the FDA said in its May report.

The FDA also said at the time that Cetero might have "fixed" studies to get the desired result, or did not include failed results in their report.

"Cetero's May 2010 and December 2010 responses are inadequate because the scope of their internal investigation was far too narrow to identify and adequately address the root cause of these systemic failures," the regulators said.

Cetero was not immediately available for comment."

Source: msnbc.msn.com/id/43916257/ns/health-health_care/