The Massachusetts CFIDS/ME & FM Association, a 501(c)3 founded in 1985, exists to meet the needs of patients with CFIDS (Chronic Fatigue and Immune Dysfunction Syndrome, also known as Chronic Fatigue Syndrome), ME (Myalgic Encephalomyelitis) or FM (Fibromyalgia), their families and loved ones. The Massachusetts CFIDS/ME & FM Association works to educate health-care providers and the general public regarding these severely-disabling physical illnesses. We also support patients and their families and advocate for more effective treatment and research.
- Last Updated: 21 January 2016 21 January 2016
The Truth About Getting Sick in America: The Real Problems with Health Care and What We Can Do [Paperback], by Dr. Tim Johnson, Hyperion; 1 edition (October 18, 2011), ISBN: 1401310877.
Review by R. Sanderson
Everyone needing medical care on a regular basis for themselves or a family member has navigated through the labyrinth of health care providers, programs and plans. Reform of the existing heath care system is one of the most hotly debated topics, especially during this election year. The current structure has become very convoluted, extravagant, and inefficient. Change is inevitable. As patients, it is better to be aware of what is going on and what kind of changes to anticipate, rather than to be overwhelmed by all the emotionally charged rhetoric.
Dr. Timothy Johnson uses lessons learned from his extensive medical career and writes candidly about these issues in his book, The Truth About Getting Sick in America: The Real Problems with Health Care and What We Can Do. With a thirty year history as ABC's chief medical editor, "Dr. Tim Johnson", he has followed the developments in health care delivery. Dr. Johnson has been on the faculty of Harvard Medical School, on the staff of Massachusetts General Hospital, and some may be surprised to learn that he graduated from a seminary in Chicago and became an ordained minister before studying medicine.
First, Dr. Johnson dispels the commonly upheld notion that the U.S. has the best health care system in the world-the emphasis is put on the term "system". He explains how there is really no system in place (i.e., an organized, universal method) that is interrelated nor in any way working with each other. Instead, health care is delivered as a “hodgepodge” (using Dr. Johnson's own term for the current structure) of many separate mini-systems and private plans which operate independently. Data is not shared, programs cannot usually be transferred and choices vary from state to state and person to person. Some people can still buy into plans offered by their employers, but benefits packages are rapidly shrinking or coming to end. There may be some individuals who can afford to purchase insurance coverage on their own or retain their own physicians, but for the most part, fewer working Americans have health insurance.
Many obvious problems and defects, but also some more obscure ones, continue to escalate the cost of health care. Dr. Johnson breaks down this Goliathan challenge into five chapters: The Big Question, Problem, Fear, Sermon and Prediction.
The Big Question asks whether what is being spent per capita in the U.S. on health care is a good value and the answer, to no one's surprise, is no. Even though the U.S. spends twice as much as comparable industrialized nations, it actually ranks lower in life expectancy and the number of potentially preventable deaths (i.e., people 75 years old or less). By having to work with so many different insurance companies and plans, the billing process creates overhead and drives up overall costs.
The Big Problem examines how consumers and providers approach health care. Over the years, many American consumers have set a pretty high standard for the kind of medical care they want and expect. They want fast access, choice of the best doctors, and use of the latest technology, but they don't stop to consider the actual cost of these services nor how they get paid. Dr. Johnson finds such attitudes and expectations are unrealistic.
Currently, hospitals and physicians are reimbursed for procedures and services provided -payment incentives are linked to "what is done". Some large hospitals will obtain the latest technologies and use these to attract and retain physicians who will utilize these extensively. This sort of arrangement becomes financially rewarding to both, although it may not be cost-effective and at times, is unnecessary. Physicians have started to rely increasingly more on tests and procedures to get answers, some of which could have been figured out through discussion and evaluation. However, Dr. Johnson points out that in the current system, there is no easy, acceptable way to charge for "thinking time". He would like a change in how doctors are paid, by giving more value to good decisions, preventative care, and positive results. Furthermore, he supports fair and adequate compensation for primary care physicians, given the many important decisions they have to constantly make. Other factors driving up cost of health care, which are detailed in the book, are aggressive promotion of new medications, use of expensive treatments with poor results or no added benefits, malpractice and the practice of defensive medicine- more than a third of what is spent on health care, at about $800 billion, is deemed unnecessary.
The Big Fear is that of federal government involvement. Despite much criticism and phobia about the federal government's role in health care, Dr. Johnson reports that federal employees, including members of Congress, receive their health insurance from a program called Federal Employees Health Benefits (FEHB), sometimes also called the "Congressional Plan" (because this is how Congress is cared for). The FEHB program is overseen by the government, but it not owned nor operated by the government (i.e., for instance, it cannot and should not be compared to the British system). It offers many choices and these are the same to all federal workers nationwide; thus, the FEHB model provides a good example of a sensible, government-managed program, according to Dr. Johnson. What the American public may hear and fear are scary words such as "takeover" or the loss of one's "freedom of choice". But what they don't hear, or may not know, is the real reason why private insurance companies tend to be strongly opposed to this sort of program-their high overhead and the need to generate profit for stockholders negatively impact their ability to compete against such a program.
The Big Sermon touches on the moral aspects of health care. While many Americans feel that care should be given when it is really needed, Dr. Johnson would much rather try to prevent illness and provide treatment during an earlier stage of illness. People without health insurance are at a higher risk of premature death (i.e., at the rate of 45,000 deaths per year according to a recent Harvard study). Dr. Johnson uses two well-known parables to further review the ethical principles in health care and believes the debate may continue on how to provide basic health care for everyone, but not on whether to do so.
The Big Prediction starts out with this bold statement (in Dr. Johnson's own words), "NO DEVELOPED COUNTRY-INCLUDING THE UNITED STATES-WILL BE ABLE TO PAY FOR EVERYTHING FOR EVERYONE AT EVERY AGE THAT MODERN MEDICAL SCIENCE MIGHT DREAM UP". Some of the proposals made by Dr. Johnson as being vitally necessary in order to reorganize and improve overall health care, would include:
- Payment Reform: change the way we pay providers
- Independent Payment Advisory: create a board to manage Medical spending
- National Information Technology Standards: build a functioning computer system through which data and records can be shared
- Comparative Outcomes Research: create a program to study comparative effectiveness of existing and new treatments, drugs, devices, and use this data to guide decisions
- Emphasis on Primary Care: restore coordination of patients' care to primary care providers and improve their pay and working conditions
- The Medical Home: a new term referring to a facility where patients would go to for the majority of their care including diagnosis, treatment, prevention, screening and management of chronic conditions
Dr. Timothy Johnson tries to look at the big picture and urges changes from political leaders right down to the individual consumer. One has to give him credit for being so outspoken as he tries to help the average person separate fact from fiction, truth from scare tactics. Since the release of his book, many of the issues raised or the suggestions made by Dr. Johnson are echoed by other medical professionals or physician organizations in the news.
The Massachusetts CFIDS/ME & FM Association understands that patients with Chronic Fatigue Syndrome/Chronic Fatigue and Immune Dysfunction Syndrome/Myalgic Encephalopathy (CFS/CFIDS/ME) or Fibromyalgia (FM) have a much harder time in getting adequate or appropriate medical care. Any revisions, especially those tied to positive outcome, could be cause for concern for chronically ill individuals. The Association will keep readers informed about major changes as they happen. Meanwhile, we encourage you to make the most of your doctor visits and consider tips and suggestions provided at our website: Working with your HCP.
Notice about names
The Massachusetts CFIDS/ME & FM Association would like to clarify the use of the various acronyms for Chronic Fatigue Syndrome (CFS), Chronic Fatigue & Immune Dysfunction Syndrome (CFIDS) and Myalgic Encephalomyelitis (ME) on this site. When we generate our own articles on the illness, we will refer to it as ME/CFS, the term now generally used in the United States. When we are reporting on someone else’s report, we will use the term they use. The National Institutes of Health (NIH) are currently using ME/CFS. The Centers for Disease Control and Prevention (CDC) are calling the illness CFS.
Until there is consensus on a name for the illness, the Massachusetts CFIDS/ME & FM Association name will not change.