Tightfisted insurance companies and dizzying government bureaucracy are squeezing the art out of medicine, forcing doctors to use one-size-fits-all approaches with patients, and needlessly putting the lives of patients at risk, according to a patient advocate and “My Life is Worth It” Co-Founder Bob Tufts.

Tufts pitched in the major leagues, went on to become a Wall Street executive, and now teaches at Yeshiva University.  He says he never missed a day of work in 30 years before getting a series of small colds a number of years ago.  His doctor ordered tests that confirmed Tufts was suffering from multiple myeloma, a cancer of the bone marrow.

Thanks to excellent instincts by his doctor and the embrace of a novelty drug therapy including thalidomide, Tufts says he felt largely back to normal within nine months.

But he says his experience is far from normal, starting with doctors willing to do extra tests to hunt down possible ailments.

“They’re getting scared to do it because many doctors have been forced, due to the cost of electronic health records and all the government mandates into hospital systems.  And the more you’re into a system, they’ll over-regulate what the doctor can and cannot do,” said Tufts.

He says the art of medicine is lost as a result and doctors are instead practicing the science of medicine and simply treating patients based on the odds.  Tufts says if he lived in the United Kingdom or some other country with government-run care, he’s probably be dead.

“When I was diagnosed, my drug was just approved for off-label use in the United States.  It was not approved in the UK.  And frankly, for front line use it was not approved until much later,” he said.

“Considering the way my cancer was high-risk, by the time I’d have begged, borrowed or whatever to try to get this drug and maybe used other ones which were harsher, I’d probably have been dead under the [National Health Service] and [National Institute for Health and Care Excellence] system,” said Tufts.

He says anytime the government gets involved in making the rules and paying the bills, the health care priorities move farther and farther away from what’s best for the patient.

“Unfortunately, as we have more and more government use and control of health care, it becomes a budgetary issue, as we’re seeing in many of the debates going on.  The more the government controls, the more it’s on a budget line and people start thinking about what that number is on the line and look at people as little pixels on a chart, not as humans trying to fight to survive,” said Tufts.

“We create a bureaucracy and what does a bureaucracy do?  It feeds upon itself.  It creates more layers and makes it more confusing for patients and anyone who enters this Byzantine system,” said Tufts.

And Tufts sees that frustration up close.

“Let the doctors practice the art of medicine and the science of medicine as opposed to spending 50,000 a practice to fill out these forms.  It drives me crazy.  Even though I love my oncologist, of our 15 minutes together, over half is spent looking at the computer entering codes so he can be paid appropriately.  That’s nonsense and a waste of time and money,” said Tufts.

But Tufts is clear to point a major finger of blame at insurance companies who increasingly challenge their responsibility to pay for novel courses of treatment.  He says the insurers force patients to jump through cruel hoops in an effort to save money.  Again, it’s not something he’s been faced with but many of the people he helps deal with it every day.

“You found out how other people were being basically denied care by step therapy or fail first.  You are to take the older, cheaper medicine for at least 30-60 days before they would allow you to try another medication,” said Tufts.

“I had a dear friend who they did that to who had terrible neuropathy, who the insurance company made go through the hell of pain for 30 days before they gave him the meds.  What was the cost difference?  Four dollars.  Over four dollars, they made a man suffer,” said Tufts.

At other times he says insurers force patients down an unnecessary, far more expensive track.

“[They are] making people go to the hospital and having the liquid transfusions as opposed to, in my case, being able to take a pill at home.  The cost out-of-pocket of going to hospitals twice a week for a transfusion versus taking a pill every day.  Those two things really got me going and I found out I was really fortunate compared to many other cancer or rare disease patients,” said Tufts.

And Tufts says the bean counters at the insurance companies are making doctors’ lives miserable too.

“I have personally seen my oncologist get on the phone and, in my early stage of treatment, and spend 15-20 minutes arguing with an insurance company that, ‘This person needs this treatment.  This is what I recommend.  This is a standard of care,’ and having the hemming and hawing  and seeing the time wasted by my doctor basically having to beg for me to keep the care that would keep me alive,” said Tufts.

Tufts says he would like to get lawmakers in a room and “knock heads” until they agreed on solutions for the current health care system.  He also thinks doctors and patients should be helping to draft legislation and that lawmakers should not just rely on number crunchers to arrive at a final bill.

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