This post was inspired by the article Patient Advocates: Flies in the Ointment of Evidenced Based Care by Jessie Gruman at Health Affairs Blog. Patient advocacy and evidenced-based medicine are both intimately entwined with several matters in rheumatological care, but first a word about flies.
Patient advocates probably are flies in the ointment, and there would certainly be no flies in a perfect world. But in a perfect world, we wouldn't be sick. In a perfect world, doctors could comprehend our pain. Treatments would work on every patient. Tests would always tell the truth'
A tug of war between medical evidence and advocates?
Jessie's post considers the clash between 1) patient advocates who promote exceptional care for all victims of a disease, and 2) the conflicting ideal of reliance upon established scientific evidence by those who try to fairly administer health care policy or health care itself. 'In past decades, the aims of advocates have frequently been at cross purposes with those of government officials charged with balancing a national research agenda.' At hand was the US Food and Drug Administration's withdrawal of its approval for Avastin as treatment of advanced breast cancer and the fever pitch of emotion that came with it.
Did you watch any of the coverage? I agree that media tend to focus on the emotional side of issues like Avastin. Yet, the last comment by Steven Walker made a point that is significant with regard to RA: Sub-types of the disease and genetic differences make one-size-fits-all treatment impossible. Unfortunately, unlike cancer, RA doesn't even have any of its sub-types classified yet. All RA treatment today is still trial-and-error, though evidence that subtypes do exist has begun to trickle out.
Evidence in the case of the 9/11 workers with cancer
Also in the news are the cancer-patient 9/11 World Trade Center (WTC) responders. Patient groups representing first responders from 9/11/01 are convinced that there have been an abnormally high number of cancers in previously healthy people. Several forums are full of anecdotal evidence. They believe that exposure to toxins such as asbestos in airborne debris contributed to their cancers. However, a committee who manages funds for health care claims of 9/11 WTC responders won't add cancer to the list of compensated conditions because they don't have evidence that WTC debris causes cancer.
The list for continued coverage does include asthma, acid reflux, carpel tunnel syndrome, and sleep apnea which some 9/11 cancer patients point out are illnesses which are far less costly to treat than cancer. However, a study has found 'very little' evidence that exposure at Ground Zero caused cancer.
Evidence outweighs hunches and sympathies. But is it sufficient?' Continue reading this post...