A Modern-Day Tuskegee and a Glimpse Of What’s Really Wrong With U.S. Healthcare

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The crime of the Tuskegee Syphilis Experiment isn't so much that it was a stupid experiment-medicine improves only through clever experiments, and stupidity is seldom criminal. What made Tuskegee so shameful was that a cure for syphilis had finally been discovered, but news of the cure was deliberately kept from the patients who needed it the most, those with tertiary stage syphilis, just so investigators could see how they died.

For the past 6 years, the world has been hurt hundreds of times worse than by Tuskegee. Like the Tuskegee syphilitics, the patients affected aren't even aware of the injustice. As in Tuskegee, patients are paying with their lives. Unlike Tuskegee, scientific curiosity isn't the motivation, just greed.

In 2002, I published a method to reverse diabetic and hypertensive kidney failure (1). It works for whites, blacks, and Hispanics, i.e. the major ethnic groups on the planet, since Hispanics are a complex ethnic mixture of Caucasian, African, and Amerindian/Asian. The kidney machine claims blacks five times, and Hispanics and Native Americans three-fold, more than whites.

Until recently, Native Americans had no diabetes at all. But in the last generation, half of Native Americans have become diabetic. The explanation is that Native Americans' "thrifty genotype," which permitted survival for thousands of starving generations, produces obesity and diabetes when mixed with a rich Western diet and physical inactivity. As a result, dialysis units are being built on every Indian reservation in the country. The National Institutes of Health (NIH) has been studying diabetes in the Pima Indians for 30 years, with nothing terribly useful to show for it.

So when I published my paper in 2002, I expected it to be front-page news in the New York Times. But the media refused to take my word for it, asking me to get an endorsement from an authority in the renal community.

I suppose that's fair enough, but somewhat depressing: even Larry Altman MD, the medical reporter for the New York Times, confessed to me that he couldn't evaluate a scientific paper on its own merits. Science majors learn how to do this their freshman year in college.

Since 2002, not a single medical authority has come forward to endorse my study, even though the founding Director of the US Renal Data System, Dr Lawrence Agodoa, called my data "beautiful" in a private conference call in early 2004. He said the rules of the NIH, his employer, refused to let him endorse a company. That's the same response the American Diabetes Association gave me, even though they partially funded the underlying research. It's also what the National Kidney Foundation told me repeatedly. Apparently this applies even if a company discovers a cure for the disease they're collecting tax-free funds for, which seems a bit disingenuous as far as the public is concerned.

Apparently, no non-profit wants to repeat the mistake of the March of Dimes, which cured their raison d'etre in the 1950s, and has been a shadow of its former self ever since.

In October, 2004, I presented my paper to the then Medical Director of Medicare, Sean Tunis, and his senior staff, including Sandy Foote. Medicare is the "single-payer" for dialysis and kidney transplantation, and currently spends about $25 billion a year for end-stage kidney disease.

Incredibly, they had no interest. Only later did it dawn on me that they'd be eliminating 90% of their own jobs along with 90% of their budget, which would terrify any bureaucrat.

Neither did the NIDDK (the Kidney Institute at the NIH), the AHRQ, the American Heart Association, the American Association for Kidney Patients, the CDC, the AMA, the National Medical Association, numerous academic Nephrology Divisions, numerous kidney transplantation societies, the American Society of Nephrology (ASN), the International Society of Nephrology (ISN), the European Society of Nephrology, individual nephrologists and transplant surgeons, multiple health insurance companies, multiple health plans, all 50 state Medicaid offices, the American College of Physicians, even religious leaders vocal about healthcare, et al. (2).

Like the American Diabetes Association, the Missouri Kidney Program, which co-funded the key research, has had no comment.

The medical director of Anthem Blue Cross/Blue Shield, whom I know personally, and who is now medical director of Wellpoint, with over 100 million patients, told me that my 1,000 patients weren't enough. "Come back when you have 100,000," he said, knowing full well that it took me 9 years to publish my paper on 1,000 patients. At that rate, he could safely wait 900 more years.

Currently, 100,000 patients go on dialysis in the US each year. My method could prevent 90% of whites, and 95% of African Americans and Native Americans, from losing their kidney function. It's fair to say that, had my paper received the notice it required, back in 2002, 90-95% of patients could have been kept off the kidney machine at least since 2006, and perhaps earlier. (I have to treat patients early, before they've lost half their kidney function, i.e. while their serum creatinine is less than 2 mg/dl. Once they're on dialysis, it's too late).

So conservatively speaking, 200,000 patients are currently on dialysis whom I could have kept off, had anyone at the NIH, CDC, NKF, etc. simply expressed interest in my paper to a reporter.

Once on dialysis, patients live only a handful of years. A 65 year old man starting dialysis has a life expectancy of 2.5 years--as opposed to decades with syphilis.

So I reckon the collective silence of the medical community, including government as well as non-profit institutions, is at least 500 times worse than their silence during the Tuskegee experiment: 400 Tuskegee patients vs. 200,000 dialysis patients. And the crime continues. Each day, another 275 patients go on dialysis for the first time, and soon die, 250 of whom GenoMed could have prevented.

Not to mention the people outside the US whose kidneys fail.

This issue painfully illustrates what's really wrong with US healthcare and, indeed, with hospital-based healthcare everywhere around the globe. Its business model requires disease. Patients must get sick for revenues to flow. A dialysis patient brings in $100,000 annually for the roughly 3 years s/he's alive. See, for example: http://medicine.lifescienceexec.com/

Access turns out not to be the real issue; quality improvement is. Spreading manure doesn't change it. Healthcare everywhere, not just in the US, is anti-innovative and therefore exploitative.

Single-payer advocates should realize that Medicare is already a single-payer for dialysis. National Health Services in other countries, e.g. Canada, Germany, Spain, France, Germany, Russia, Japan, Singapore, etc. have had no interest in my method of preventing dialysis, either. In other words, Medicare is just like every other Single-Payer around the globe. Bureaucrats want to hang onto their own jobs just like everybody else. Unlike other people, they have the power to do so. The essence of bureaucracy, as Kafka made clear, is lack of personal responsibility. Bureaucrats are anonymous and unaccountable, and all-powerful.

I believe that any discussion of healthcare reform is dangerously uninformed without taking into account this stark example of what's really wrong with the healthcare industry.

The fix is simple. To improve outcomes, start by making sure they're reported. Next, encourage competition. Keep at least two payers around. A single payer, like any monopoly, gets complacent. And bureaucracies are inherently unaccountable, no matter how many figure-head Inspectors General and Ombudsmen they have.

This solution is practically free: just mandate reporting of clinical outcomes for any patient whose healthcare is paid with federal dollars. That covers half of American patients. Post clinical outcomes for each insurance plan, each hospital, and each physician on the web, for all to see. How many diabetic patients seen by Dr. X go on dialysis? How many in Dr. Y's practice?

Medicare is already starting to do this already with the PQRI (Physicians Quality Reporting Initiative).

Then let patients vote with their feet. This would ensure competition on outcomes, and tie economic survival of health plans and practitioners to their patients' survival. In one neat trick, we will have inverted the current business model for healthcare, so that it actually benefits patients rather than preys on them.

References

1. Moskowitz DW. From pharmacogenomics to improved patient outcomes: angiotensin I-converting enzyme as an example. Diabetes Technol Ther. 2002;4(4):519-32. PMID: 12396747. (For PDF file, click on paper #1 at: http://www.genomed.com/index.cfm?action=investor&drill=publications)--this paper reports on 1,000 white and black male veterans. An additional 350 Hispanic men and women with diabetes were treated during the period 2001-2007, and showed no progression of their normal kidney function (unpublished data).

2. Moskowitz, DW. Promoting dialysis alternative. Letter. ACP Observer, Dec. 2006 (http://www.acponline.org/journals/news/dec06/letters.htm)

Dave Moskowitz is well-trained nephrologist and founder, CEO, and Chief Medical Officer of GenoMed, a Next Generation DM(tm) company (DM = Disease Management). GenoMed is a patient-friendly company which does business over the Internet. For more information please visit www.genomed.com

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