This blog is a way of sharing the information and resources that have helped me to recover my son Roo from an Autism Spectrum Disorder. What I have learned is to view our symptoms as the results of underlying biological cause, which can be identified and healed. I say "our symptoms" because I also have a neuro-immune disorder called Myalgic Encephalomyelitis.

And, of course, I am not a doctor (although I have been known to impersonate one while doing imaginative play with my son)- this is just our story and information that has been helpful or interesting to us. I hope it is helpful and interesting to you!


Sunday, February 26, 2017

Problems with the Medical System in the US

In the US, we pay more for our medical care compared to every other country, yet we as a nation keep getting sicker. We have higher rates of many diseases than countries that spend just a fraction of what we do on medical care. The infant mortality rate in the US is embarrassingly high- we rank among third world nations. Something is deeply wrong at the heart of this system- well, many things, on pretty much every level. People are getting sicker, many patients have complex health issues that often go undiagnosed and untreated for years, doctors and other medical personnel are burned out. Many "new" diseases are being "discovered", known diseases that were once rare are becoming more common, and for those of us in this boat it is especially obvious that this medical system is not set up to handle any of this.

The Big Picture:

Being American Is Bad for Your Health
"Americans under age 75 fare poorly among peer countries on most measures of health. This health disadvantage is particularly striking given the wealth and assets of the United States and the country's enormous level of per capita spending on health care, which far exceeds that of any other country."

Living Sick and Dying Young in Rich America
"But it’s not just that Americans are getting sicker—it’s that young Americans are getting sicker. A 2013 report by the National Research Council and Institute of Medicine (NAC/IOM) echoes the shock of that fact. “The panel was struck by the gravity of its findings,” it reads. “For many years, Americans have been dying at younger ages than people in almost all other high income countries.”

The US Health Disadvantage Relative to Other High-Income Countries: Findings From a National Research Council/Institute of Medicine Report
"The United States spends more on health care than does any other country, but its health outcomes are generally worse than those of other wealthy nations. People in the United States experience higher rates of disease and injury and die earlier than people in other high-income countries. Although this health disadvantage has been increasing for decades, its scale is only now becoming more apparent."

"The scope of the US health disadvantage is pervasive and involves more than life expectancy: the United States ranks at or near the bottom in both prevalence and mortality for multiple diseases, risk factors, and injuries."


Shorter Lives, Poorer Health: Panel on Understanding Cross-National Health Differences Among High-Income Countries
(This is the report made by National Research Council and The Institute of Medicine that is referenced in the articles above.)

Bias, Prejudice, and Abuse of Patients:

Leana Wen: What your doctor won’t disclose
TED talk by a doctor about issues of trust in the doctor-patient relationship, doctors resisting transparency about themselves and how they practice (including disclosing payments and perks from pharmaceutical companies).

My Son Has Autism.  Discrimination Almost Cost Him His Life.
"Five years ago, when my son Lief was 9, he fell ill with a virus. The virus attacked his heart and flooded it with fluid. The pressure from the growing pool inside his heart tore the muscle fibers. In a matter of weeks, he was transformed from a healthy kid to a critically ill hospital patient with only one hope for survival: a heart transplant.


Because of our son’s disability, the doctors at our local children’s hospital told us that no facility would perform the transplant, and we should prepare for him to die. A second hospital also refused to consider him. As Lief’s condition swiftly deteriorated, one young physician pleaded Lief’s case to a third transplant hospital, and Lucile Packard Children’s Hospital at Stanford University opened its doors to us.

We were warned that Lief would not survive the flight from Portland, Ore., to California. As we flew through the night, Lief’s heart stopped again and again. When we arrived, he was outfitted with a standard “bridge therapy.” This cumbersome computer and heavy batteries that hang from outside the body had the power to extend his life by years. The device is used by 7,000 children and adults. Our local hospital had failed to make us aware that this therapy existed and could extend his life."


Women Are Dying Because Doctors Treat Us Like Men
"Studies have shown that female patients' symptoms are less likely to be taken seriously by doctors, and women are more likely to be misdiagnosed, have their symptoms go unrecognized, or be told what they're experiencing is psychosomatic. "It happens all the time," says Dr. Martha Gulati, head of cardiology at the University of Arizona College of Medicine, after hearing the details of Mirza's case. "If you're in health care and take care of a lot of women, you certainly hear these stories and shake your head, because you know what they're going to say, because you see it far too often, unfortunately. The bottom line is, we don't do as good of a job taking care of women as we do men." In the decade Mirza spent waiting for a proper diagnosis, her heart sustained damage that can never be undone. She has had a dozen heart surgeries, went into heart failure in 2013, and will almost assuredly need a transplant one day. "There is inherent bias that makes us undervalue women's symptoms," Gulati adds. "What [Mirza] experienced is a great example of the problem with us not recognizing women at risk—by the time we make a diagnosis, they are living with the consequences of the lack of care."

Being a Good Girl Can Be Hazardous to Your Health

We Cannot Continue to Let Doctors 'Gaslight' Chronic Illness Patients

For people with disabilities, doctors are not always healers
"As with James, patients may have unnecessary tests ordered because of their disability. Doctors and nurses label this approach “veterinary medicine.” In other words, just as for an animal that can’t speak for itself, they order tests rather than talk to patients who are perceived as being “slow” or “difficult.” These patients often receive inadequate care: Either doctors can’t see past the disability and attribute all problems to it, or they fail to acknowledge the true impact of these impairments...
Numerous reports have documented that people with disabilities have poorer health and receive inferior health care."


The Danger of Treating ER Patients as Drug Seekers
"Recently the news has been covering the story of Barbara Dawson, a Florida woman who was arrested after she refused to leave a hospital that would not treat her for abdominal pain. While being escorted from the hospital in handcuffs, she collapsed in the parking lot and later died."

Detroit EMT fired for refusing to help save distressed 8-month-old baby that died next day

Hospital staffers took photos of an unconscious patient’s genitals and shared them

Ohio State has more than 100 firsthand accounts of sexual misconduct by former athletic doctor


Systemic Problems (shortages, incompetence, etc)

The FDA keeps an updated list of drug shortages and has an app that can notify you about them.

Drug Shortages Forcing Hard Decisions on Rationing Treatments
"In recent years, shortages of all sorts of drugs — anesthetics, painkillers,antibiotics, cancer treatments — have become the new normal in American medicine. The American Society of Health-System Pharmacists currently lists inadequate supplies of more than 150 drugs and therapeutics, for reasons ranging from manufacturing problems to federal safety crackdowns to drug makers abandoning low-profit products. But while such shortages have periodically drawn attention, the 
rationing that results from them has been largely hidden from patients and the public."

FDA approves first generic version of EpiPen 
The article discusses how the new generic version will help ease the chronic shortage of EpiPens that worsens near the end of the summer as kids need new prescriptions for school and other activities.  It also talks about how Mylan, the brand name version, actively fought the approval of the new generic
version out of self interest.

National Practitioner Data Bank 
national database that tracks problem doctors.
Congress created the national clearinghouse in 1986 to prevent problem medical workers from crossing state lines to escape their pasts and keep practicing.

VA conceals shoddy care and health workers' mistakes
"In 88 cases, the VA concluded, Franchini made mistakes that harmed veterans at the Togus hospital in Maine. The findings reached the highest levels of the agency. "We found that he was a dangerous surgeon," former hospital surgery chief Robert Sampson said during a deposition in an ongoing federal lawsuit against the VA. Agency officials didn’t fire Franchini or report him to a national database that tracks problem doctors. They let him quietly resign and move on to private practice, then failed for years to disclose his past to his patients and state regulators who licensed him.

In other cases, veterans’ hospitals signed secret settlement deals with dozens of doctors, nurses and health care workers that included promises to conceal serious mistakes... In at least 126 cases, the VA initially found the workers’ mistakes or misdeeds were so serious that they should be fired. In nearly three-quarters of those settlements, the VA agreed to purge negative records from personnel files or give neutral or positive references to prospective employers. In denying requests for information, the agency cited federal privacy law and said protecting employees’ privacy outweighed the public’s right to know about problems involving veterans’ care."


The Breakdown in Biomedical Research
"Contaminated samples, faulty studies and inadequate training have created a crisis in laboratories and industry, slowing the quest for new treatments and cures"

‘Ain’t nobody got time for this’: 911 dispatcher sentenced to jail after hanging up on thousands of callers

Cincinnati officers searching for teen crushed in van never got out of cruiser

A doctor with a chronic health condition describes just how hard it can be to get a routine prescription filled for a long-term medication.

Bacteria infected 10 infants at UC Irvine hospital, but the public is just finding out

Evidence of the Superiority of Female Doctors
Not all medical care is equal in quality, and steps could be taken to improve the quality of doctor care, which would limit mortality and morbidity.

The System is Also Not Working Well for Many Doctors and Other HCPs

Why Doctors Kill Themselves TED talk

Let Doctors Be Doctors
There is starting to be a movement by doctors and other health care personnel to move away from the intensive use of EHR (electronic health records) , particularly in settings such as the ER in which the need to keep up with the EHR can be dangerously distracting for providers.  There are many other reasons why this is an issue, and they are covered in a funny parody song by ZDoggMD (a med student, possible doctor now, and the founder of the Let Doctors Be Doctors movement (he also does a mean Darth Vader as Doc Vader).

Miller Philosophical, Blunt, Calls for Systemic Change
"Why is medicine no longer a noble profession?” he said to a capacity crowd. “If you don’t like what I have to say, you are welcome to leave, but … we must do this for our patients.” A self-described individualist with rightwing roots, Dr. Miller said a single-payer system, similar to that used in Great Britain, will force doctors to improve the quality of care they are providing their patients.“I started off as a far right-wing Goldwater supporter and I may leave this world a socialist,” he said. “It is the god damnedest thing I’ve ever seen. This is hard, …we don’t want regulations, but perhaps we need them.

The inverted incentives that doom the current system to failure are a good example of external forces that need be eradicated, Dr. Miller said. They (incentives) are perverse and they are certainly not sustainable,” he said. “If we adopted best practices throughout the country, one-third of the health care practitioners in the country would be fired and would have to be retrained."


Patient Care Can Be Compromised by The Involvement of Other Systems

Fallout continues for detective who assaulted a nurse, and why there may be a lot more to this story

Are clinical practice and public health policies actually supported by current evidence?

The Four Most Dangerous Words? "A New Study Shows"
This talk, given by philanthropist Laura Arnold, is about how much programs and policies meant to help people (anything from medical treatment to reading programs to job training programs) are not based on sound evidence, and when subjected to rigorous scientific study, are found to be worthless at best and harmful at worst.  She makes the point that since millions of dollars are spent on such programs each year we need to know what works and what doesn't so that the money can go to support programs that actually work.  She talks a bit about the culture around research, publication, and policy-making that has led to this situation.

"For all the truly wondrous developments of modern medicine—imaging technologies that enable precision surgery, routine organ transplants, care that transforms premature infants into perfectly healthy kids, and remarkable chemotherapy treatments, to name a few—it is distressingly ordinary for patients to get treatments that research has shown are ineffective or even dangerous. Sometimes doctors simply haven’t kept up with the science. Other times doctors know the state of play perfectly well but continue to deliver these treatments because it’s profitable—or even because they’re popular and patients demand them. Some procedures are implemented based on studies that did not prove whether they really worked in the first place. Others were initially supported by evidence but then were contradicted by better evidence, and yet these procedures have remained the standards of care for years, or decades."

Dangers and side effects from treatment and medications

Prescription Drugs Now Kill More People In The US Than Heroin And Cocaine Combined

When Half a Million Americans Died and Nobody Noticed (Vioxx)

Drug executives to testify before Congress about their role in U.S. opioid crisis
"Current and former executives with the pharmaceutical distributors that are accused of flooding communities with powerful prescription painkillers have been summoned to testify before Congress about their role in the U.S. opioid epidemic."

"Since 2000, the epidemic has killed 200,000 people — more than three times the number of U.S. military deaths in the Vietnam War."


Secret Clinical Trial Data to Go Public: Drug companies have begun to share their clinical trial data. The long-overdue shift heralds a new era in medicine (from Scientific American)
"How well does a prescription drug work? It can be hard for even doctors to know. Pharmaceutical companies frequently withhold the results of negative or inconclusive trials. Without a full accounting, a physician who wants to counsel a patient about whether a drug works better than a sugar pill is frequently at a loss. Drug companies share only airbrushed versions of data on safety and usefulness.

As a consequence, regulators can approve drugs that have hidden health hazards. Clinical trials of GlaxoSmithKline's diabetes drug Avandia (rosiglitazone) and Merck's anti-inflammatory Vioxx (rofecoxib) revealed an elevated cardiac risk from the drugs, but relevant findings were held back from regulators or never published.* Far more drugs have gone to market with critical safety data kept secret. These scandals have tarnished the reputation of the pharmaceutical industry."


Pharma's Undue Influence on Clinical Practice

Transparency in medicine Dr Wen

Pharmaceutical advertisements in leading medical journals: experts' assessments.
"In the opinion of the reviewers, many advertisements contained deficiencies in areas in which the FDA has established explicit standards of quality. New strategies are needed to ensure that advertisements comply with standards intended to promote proper use of the products and to protect the consumer."

Accuracy of pharmaceutical advertisements in medical journals.
"Doctors should be cautious in assessment of advertisements that claim a drug has greater efficacy, safety, or convenience, even though these claims are accompanied by bibliographical references to randomized clinical trials published in reputable medical journals and seem to be evidence-based."

Fraud, Conflicts of Interest, and Ethics Violations

Martin Shkreli Is Found Guilty of Fraud
This is a case of fraud that was bigger than just medical issues, but it did involve a shell pharmaceutical company and sheds some light on how corporations involved in the medical field can be affected by larger-scale fraud in the financial sector.

EpiPen maker failed to investigate product flaws associated with patient deaths, FDA says
"The FDA said Meridian Medical Technologies, a Pfizer company that manufactures the auto-injectors used to treat life-threatening allergic reactions, had detected faults in some units of the EpiPen and failed to adequately respond. In addition, the company received "hundreds of complaints" that the drug did not function properly -- "including some situations in which patients subsequently died."

Medical Costs and Insurance

Frequency and Magnitude of Co-payments Exceeding Prescription Drug Costs
"A co-payment suggests sharing the total cost between patients and payers. However, drug co-payments sometimes exceed costs, with the insurer or pharmacy benefit manager (PBM) keeping the difference. Furthermore, some pharmacists are contractually prevented from alerting patients when their co-payment exceeds the drug’s cash price. Although some have argued that the practice is uncommon, a 2016 survey of independent pharmacists indicates otherwise."

Lawmakers grill Mylan CEO over EpiPen price hikes
"Jason Chaffetz (R-Utah), chairman of the House Committee on Oversight and Government Reform, held up an EpiPen to punctuate his point that epinephrine — “the juice” inside Mylan’s device — costs about $1 a dose. The list price of a two-pack of the pens is $608, up about 500 percent in a decade."

"You virtually have a monopoly, and you've used it to your advantage - but unfortunately, it's at the expense of people who need it," said Rep. Gerald E. Connolly (D-Va.). "I'm wondering what your sense of social responsibility is to those people."


Hospitals are fed up with drug companies, so they’re starting their own
"A group of major American hospitals, battered by price spikes on old drugs and long-lasting shortages of critical medicines, has launched a mission-driven, not-for-profit generic drug company, Civica Rx, to take some control over the drug supply.
Backed by seven large health systems and three philanthropic groups, the new venture will be led by an industry insider who refuses to draw a salary. The company will focus initially on establishing price transparency and stable supplies for 14 generic drugs used in hospitals, without pressure from shareholders to issue dividends or push a stock price higher."
CNN Exclusive: California launches investigation following stunning admission by Aetna medical director
"California's insurance commissioner has launched an investigation into Aetna after learning a former medical director for the insurer admitted under oath he never looked at patients' records when deciding whether to approve or deny care."

Why the U.S. pays more for health care than the rest of the world (Piece by NPR)

The case of the $629 Band-Aid — and what it reveals about American health care
We have all experienced the bizarrely high prices charged for many medical services and devices, and I think we can all relate to the parent who wrote this article about the absurdity of medical pricing.

Our daughter was born with half-a-heart. Instead of treatment, Cigna has put our family through insurance nightmare.

A Giant Pain in the Wallet
How an effort by the FDA to evaluate drugs that have been on the market since before testing was required has allowed pharmaceutical companies to price-gauge patients.

The U.S. Health Care System: An International Perspective
"This fact sheet will compare the U.S. health care system to other advanced industrialized nations, with a focus on the problems of high health care costs and disparities in insurance coverage in the U.S. It will then outline some common methods used in other countries to lower health care costs, examine the German health care system as a model for non-centralized universal care, and put the quality of U.S. health care in an international context."

"The OECD found that in 2013, the U.S. spent $8,713 per person or 16.4 percent of its GDP on health care—far higher than the OECD average of 8.9 percent per person. Following the U.S. were the Netherlands, which allocated 11.1 percent of its GDP, then Switzerland also at 11.1 percent, and Sweden, which allocated 11 percent of its GDP to health care in 2013. In North America, Canada and Mexico spent respectively 10.2 percent and 6.2 percent of their GDP on health care."

"On a per capita basis, the U.S. spends more than double the $3,453 average of all OECD countries."


The Reason Health Care Is So Expensive: Insurance Companies
"But the thing that few people talk about, and that no serious policy proposal attempts to fix—the arrangement that accounts for much of the difference between health spending in the U.S. and other places—is the enormous administrative overhead costs that come from lodging health-care reimbursement in the hands of insurance companies that have no incentive to perform their role efficiently as payment intermediaries."

"Because insurers are paid a fixed percentage of the claims they administer, they have no incentive to hold down costs. Worse than that, they have no incentives to do their jobs with even a modicum of competence."


Medical Bills Leading Cause of Bankruptcy, Harvard Study Finds
"Illness and medical bills caused half of the 1,458,000 personal bankruptcies in 2001, according to a study published by the journal Health Affairs.  The study estimates that medical bankruptcies affect about 2 million Americans annually -- counting debtors and their dependents, including about 700,000 children.  Surprisingly, most of those bankrupted by illness had health insurance. More than three-quarters were insured at the start of the bankrupting illness. However, 38 percent had lost coverage at least temporarily by the time they filed for bankruptcy."

"Using a comprehensive database of closed claims maintained by the Texas Department of Insurance since 1988, this study provides evidence on a range of issues involving medical malpractice litigation, including claim frequency, payout frequency, payment amounts, defense costs, and jury verdicts. The data present a picture of stability in most respects and moderate change in others. We do not find evidence in claim outcomes of the medical malpractice insurance crisis that produced headlines over the last several years and led to legal reform in Texas and other states. Controlling for population growth, the number of large paid claims (over $25,000 in real 1988 dollars) was roughly constant from 1990–2002. The number of smaller paid claims declined. Controlling for inflation, payout per large paid claim increased over 1988–2002 by an estimated 0.1 percent (insignificant) to 0.5 percent (marginally significant) per year, depending on the data set we use. Jury awards increased by an estimated 2.5 percent (insignificant) to 3.6 percent (marginally significant) per year, depending on the data set, but actual payouts in tried cases showed little or no time trend. Real defense costs per large paid claim rose by 4.2–4.5 percent per year. Real total cost per large paid claim, including defense costs, rose by 0.8–1.2 percent per year."

Are Things Changing?

What Veterinarians Know That Physicians Don't
This is a TED talk given by Barbara Natterson-Horowitz (Professor of Medicine in the Division of Cardiology at UCLA Medical School), in which she argues that human medical treatment could be improved if doctors thought of patients as "human animals".  She argues that while animal bodies are can be very different from each other, thinking in terms of similarities could open up many options and treatments that are routinely used on animals but no one ever thought to try for humans.  This change in paradigm may not be so easy to manifest, as there is a rampant culture of "human exceptionalism" in conventional medicine and a corresponding arrogance on the part of MDs that can interfere with doctors providing the best care.

IBM's Watson learning to diagnose cancer