Think Your Medical Records Are Private? Think Again After New Law Comes Into Effect

When I arrived at UC Health for my prostate cryosurgery treatment on June 20th, one of the first questions asked was 'Would you be interested in allowing us to take DNA for medical research?'   Now, as much as I am foursquare for medical research, and want it to advance as far as possible, I am not willing to just willy-nilly hand out my DNA. But on reading of the emergence of new legislation concerning patient privacy rights in the WSJ a week ago, I am not at all sure it matters any more.

The article by Twila Brase ('Congress Has Exposed Patients' DNA To Prying Eyes') ought to make any reasonable person's skin crawl at the level of intrusion into citizens' lives. The particular law in question is The 21st Century Cures Act which "was hailed as the biggest healthcare reform since Obamcare".

Why is this?

We are informed that this legislation, passed by "unanimous consent" by both houses of congress last December (interesting the big legislative moves BOTH parties can agree on!)  increased the budget of the National Institutes of Health. It also "designated $3 billion for cancer research" - always a good thing - and "set $500 million alone for 2017 to address the opioid crisis". Again, so far, so good.

But before we go further, it's important to reference an earlier law which in many ways opened the doors to the excesses of the one under consideration. That is the Health Insurance Portability and Accountability Act of 1996.  That particular law from 21 years ago "allowed government funded researchers to collect and even share patients' medical and genetic information without their consent."


Yes, you read that correctly.

The 21st Century Cures Act  goes further by putatively creating an "information commons", i.e. a government regulated pool of data accessible to all health researchers, irrespective of background, training or motive. That means any half-cocked fool who slaps an "M.D." after his name, could conceivably snatch your medical data for god knows what purposes. It doesn't matter since the motive is immaterial.

As Ms. Brase writes, and with which I agree:

"Although speeding research is a noble goal, there's little evidence that patients are willing to sacrifice their privacy the way that the 21st Century Cures Act requires. A 2007 survey by the Institute of Medicine found that only 1 percent of Americans were willing to have their health information shared for research without their consent.  Yet the new law doesn't give patients in government funded research any method to opt out of data sharing."

Indeed, the author adds this new law "prohibits 'information blocking by health care providers."  That means the law essentially mandates that doctors and hospitals share data with government researchers.

What about precedents? Well, "federal courts have upheld forced data sharing because patients 'voluntarily' give personal health information to their doctors."  In fact, that is kind of cutting it close to the legal margins.  When a patient, like I've been with cancer, sees a doc - whether specialist or primary care- you are requested to sign forms pertaining to disclosure of your medical information for those that need to know. That doesn't mean we are giving carte blanche for every third party to know!  But that is how these courts have interpreted patients' signing of such forms. Think about that next time you're asked to sign one.

According to Ms. Brase:

"In theory, the data shared under the 21st Century Cures Act can't be traced back to individual people. It's stripped of direct identifiers like names, street addresses and Social Security numbers. But with big data virtually everything is traceable."

She then cites the case a few years ago when Harvard researchers examined about 600 anonymized profiles from a genome research project. The participants themselves had provided only odd pieces of information like sex, birth date and zip code. But the researchers were able to identify nearly half the subjects by name by comparing what they had against public records and voter data.

As Brase observes: "The same approach could work on medical records containing sensitive information about alcoholism, illegal drug use or sexual abuse."

If this 21st Century law was the only one to worry about, in terms of your medical record privacy, it would be bad enough. Especially as we learned yesterday of the massive data breach of Equifax and some 143 million credit records illegally accessed, including; addresses,  credit card and Social Security numbers. Make no mistake if n'er do wells can hack credit records they can get medical records as well.

Another law citizens need to watch out for is the 'Preserving Employee Wellness Programs Act' introduced in March by Rep. Virginia Foxx (R, NC)..  This law would give companies leverage to push genetic tests on their employees. Any one who tries to opt out would be subject to having their insurance premiums jacked up by as much as 50 percent. In other words, having a financial 'gun' pointed at their heads. 

With genetic test results at their disposal companies would then be free to cherry pick their employees, say avoiding hiring those at high risk of getting a serious illness like cancer or MS. Other workers already employed, if new tests disclose problems, could be given bad reviews or denied raises to either get them to quit or force their resignations.

Incredibly, while many have been obsessed with the NSA and its XKeyscore and MUSCULAR programs violating 4th amendment rights,  equally intrusive laws governing the health sector have been at work.  One is almost led to ask at this point why it is our congress critters can only unite in the spirit of bipartisanship to undermine citizens' privacy.

Ancient Parasites Released By Arctic Melting

Cross section of Sarcocystis pinnipedi (purple dye) which has been newly released from Arctic ice and now wreaking havoc

While dummies, disinformationists and tools continue to try to deny global warming, havoc reigns in the larger world from cracking glaciers and melting ice sheets to now....ancient parasites being released from their frozen lairs to parasitize new hosts.

One such newly identified parasite,  once frozen safely in Arctic tundra is Halichoerus grypus. As reported in research published by Michael Grigg - a molecular parasitologist at the National Institutes of Health -the parasite has now been linked to the deaths of hundreds of grey seal pups on Canada's Hay Island.

Grigg and colleagues also found another  parasite (see graphic) that infects about 80 percent of ringed seals but doesn't make them sick. However, it does cause inflammation and damages tissues. This happens by the process of cyst formation, a natural reaction of many mammals to parasite infestation. For example, tapeworm larvae which make their way to human brains are often encysted, e.g.




Interestingly, researchers had noticed parasite-filled cysts in ringed seals before but hadn't identified the organism. The pressure
 wasn't on to do so until it began laying waste other species.  These included: Hawaiian monk seals, and Stellar sea lions.

Grigg suspects rising temperatures and melting ice encouraged grey seals to follow fish into ringed seal territory where they've  become prey to the newly thawed parasites.  Even worse, the new parasites have also been found in some beluga whales in the Beaufort sea, north of Alaska.

Researchers also point out that a warming Arctic may help the parasites survive further north than it ever could before.  Meanwhile, humans continue to dither and debate whether global warming is "real" as the entire planet and now whole ecological niches are being altered around us.

Perhaps humans aren't fit to be stewards of this planet!

Another Medical Reversal - This Time On Niacin

"No more niacin for you!"

Reversals on key medical issues are causing many of us to wonder if it makes any sense to use medical guidelines at all, given they seem to change with each passing week.  The latest turnaround is on Niacin, which had been advised to control HDL - the high density lipoprotein cholesterol that wreaks havoc in arteries. It also had been found to lower triglycerides.

I had been faithfully taking it the past five years for these reasons - and had found that my last lipid panel last year yielded the best results ever (though granted, a role may have been played by other factors such as eating more fish, avocados, good fats in general). But what caught my attention was a medical brief in the most recent AARP Bulletin (September, p. 4) entitled 'Nixing Niacin'.  It noted:

"For 50 years, doctors have recommended high doses of the B vitamin niacin to lower cholesterol and improve heart health. But two large new studies show that niacin not only doesn't reduce deaths from heart disease, it puts patients at risk for serious side effects including infections and diabetes. 'This is no longer a drug for routine use' says Northwestern University preventive cardiologist, Donald Lloyd Jones."

Since I'd only just purchased some $35 in niacin a few days before I was curious to learn more about how the whole issue changed.  It turns out  the National Institutes of Health sponsored an American study, and the drug company Merck funded a large international study. One tested extended-release niacin, and the other evaluated a combination of extended-release niacin and laropiprant, an agent designed to make the niacin more tolerable.  Both studies failed to show that niacin reduced the risks of heart disease, stroke and death.

More sobering, researchers stopped the American study prematurely because the possibility of finding any benefit became so remote that its continuation seemed futile. Additional follow-up analyses conducted in both studies did not show that niacin provided a convincing benefit to any group of patients. 

 

 

But the worst news was that niacin caused  multiple side effects, many of which are serious.

 

It was learning about this that got me to (reluctantly) toss the 250 count  re-supply bottles I'd just purchased. As wifey said: "You can't continue to take it knowing what you know now."  And, of course, I will have to inform our family physician when we see her tomorrow.  One disturbing aspect of these recent studies is that in addition to the discomfort (i.e. flushing, random itching) that many patients have, they show that niacin can cause more serious side effects. In the international study, niacin increased the risk of gastrointestinal events such as diarrhea and ulcers by 28 percent; as well as musculoskeletal problems such as muscle damage and gout by 26 percent; rashes, skin ulcerations and other serious skin-related problems by 67 percent. Worse, increased infections by 22 percent; and gastrointestinal bleeding or other bleeding by 38 percent.

 

In addition, patients on niacin were 32 percent more likely to receive a diagnosis of diabetes than those not on the drug, and in those with diabetes, niacin increased the risk of serious problems with disease management by 55 percent. Safety problems were also apparent in the American study, in which those taking niacin had a higher risk of gastrointestinal problems and infections than those taking a placebo. It was the concordance of these studies in showing harms that is so convincing and which doubtless led to the AARP Bulletin notice - which I suspect many will now take to heart.

 

SO, without niacin in the cardiovascular arsenal what can be done? As I noted above, eating more good fats - such as found in avocado and fish like salmon. Also, it is possible that my consistent consumption of those alone may have been responsible for bringing my HDL and triglyceride numbers more in line - much more than the 500 mg of niacin I'd been taking every day.

 

Stay tuned, more medical turnarounds are bound to come!

Liver Damage: Let's Not Confuse Vitamins With Dietary Supplements

The new report released that discloses a major uptick in liver damage incidence arising from weight loss, energy and other supplements ought to get everyone's attention (New York Times, 'Spike in Harm to Liver Is Linked to Dietary Aids', Dec. 22, p.1).  The problem is many may not distinguish "supplements" from dietary supplements" and believe the latter are implicated too.

But according to the piece (ibid.):

"More popular supplements like vitamins, minerals, probiotics and fish oil are not linked to patterns of adverse effects".

This according to Duffay MacKay of the Council for Responsible Nutrition. The actual culprits are in the realm of "weight loss" powders, pills etc. as well as those claimed to be for muscle building. (The latter often spiked with unlisted steroids, etc.). Also alleged "fat burning" products like OxyElite Pro "that was linked to one death and dozens of cases of hepatitis).

The risk to livers arises as "half of Americans use dietary supplements and most take more than one product at a time". The next step for many? Severe liver damage which may be so severe one must either restrict activities radically, or await a liver transfer because the organ ceases to function entirely.

According to the piece, the FDA estimates that 70 companies are not following quality control standards so many Americans have no idea what they're putting into their bodies. Further, of about 55,000 such supplements sold in the U.S. only about 170 (0.3 %) have been studied enough to determine side effects. What we do know is that when the National Institutes of Health began tracking liver injuries in 2004, dietary supplements accounted for 7 percent of the 115 severe cases.  But that has increased to 20 percent of over 300 cases last year.

The list included dozens of men sickened by taking body building supplements, with all the patients fitting a similar profile. According to one investigator (ibid.):

"They become very jaundiced for long periods of time. They itch really badly, to the point they can't sleep. They lose weight."

Meanwhile, another two -thirds of  liver damage victims were "middle aged women who used supplements to lose weight or gain energy."

Is it worth it to take this crap? I don't think so. Risking your liver when liver transplants are not exactly any easier than kidney transplants is not a smart move. If you want muscles that badly....well, buy a muscle suit. If you want to lose weight....EXERCISE more, eat less. If that doesn't work, you need more help than a dietary fix can provide!