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.)

What vets know and physicians don't
Bias, Prejudice, and Abuse of Patients:

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

Systemic Problems (shortages, incompetence, etc)

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."

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"

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).

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

"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."

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 randomised clinical trials published in reputable medical journals and seem to be evidence-based."

Medical Costs and Insurance

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.

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."

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