Red Skin Syndrome (RSS) – Topical Steroid Addiction – A Conspiracy of Silence – 8/8
It appears that appearances are more compelling than facts in contemporary America. Despite my thirty years of careful observation and investigation, scientific research, and appropriate medical reporting, an alarming increase in corticosteroid addiction in the atopic dermatitis patients persists.
A conspiracy of silence has prevented mainstream America from receiving the cure for topical steroid addiction and the resulting Red Skin Syndrome. Those who care for RSS patients hold the power and bear the responsibility for making the cure for this public health problem known.
We hold the power and bear the responsibility.
- IT APPEARS THE NEA TASK FORCE IS DISINGENUOUS IN THEIR COMMITMENT TO PUBLIC HEALTH: The National Eczema Association (NEA) created a task force that sponsored and funded a physician review to ascertain if topical steroid addiction actually exists, to define steroid addiction, to explore the clinical findings, and to determine how common addiction is. Their narrow review of the literature examined only 34 articles that they fully admit are limited by low quality evidence, variability in the extent of data, and the lack of studies with rigorous steroid addiction methodology. Their review conspicuously failed to include my own comprehensive paper analyzing 1500 patients. All of the items the task force was charged to find answers for had already been answered and documented in my detailed paper directly contradicting the NEA who refused to identify topical steroid addiction leading to RSS as the dominant problem of all eczema patients. Instead, they concluded that topical steroid withdrawal is “likely” due to misuse of steroids but is a rare and minor problem only seen on the face and in the groin. Theirs is a grievously wrong conclusion that ignores the 10,000 patients suffering with RSS today. Truthful findings would have eliminated the need for the existence of the NEA. Shame on the NEA and the authors of their disingenuous review.
- IT APPEARS THAT ITSAN AND THE TOPICAL STEROID ADDICTION SUPPORT GROUP VALUE MEMBERSHIP AND FUND RAISING ABOVE PUBLIC HEALTH: International Topical Steroid Awareness Network (ITSAN), The Topical Steroid Addiction Support Group and other smaller private groups are attempting to increase their membership, solicit more contributions, sell more items and acquire more company sponsorship. They have failed to see that their public health mission is to find medical care for their followers to cure their plight not to aggrandize their organization. A recent trip to Washington to plead for legislation to allow RSS to become an “orphan disease” is pure folly. Keeping the organization going appears to be the prime reason for ongoing advertisements. I implore them to return to their original status as a Facebook support group and continue to guide their ailing followers into appropriate medical care hands.
- IT APPEARS THE DRUG COMPANIES VALUE PROFIT ABOVE PUBLIC HEALTH: Instead of finding cures for diseases the drug companies are attempting to find new diseases for their new drugs including biologicals, monoclonal antibodies, and anti-mitotic. Pure science requires the atopic RSS patients cease the use of steroids when they enter into research projects. Pharmaceutical companies have RSS patients continue their use of steroids during the study and that completely skews the results. This poor scientific methodology is a conflict of interest and makes pharmaceutical studies on RSS useless. Further, since they have not looked at the literature about RSS nor recognized its existence they insist that they are studying and treating “bad eczema” patients.
- IT APPEARS THE ACADEMY OF DERMATOLOGY SACRIFICES PUBLIC HEALTH BY VALUING DRUG COMPANY RESEARCH ABOVE INDEPENDENT FINDINGS: The Academy of Dermatology disseminates pharmaceutical company sponsored research, papers and lectures at the meetings of the Academy and in their journals instead of independent research. Why are there no oversight and questioning of methodology or conflicts of interest? If the peer reviewed journals that I am discussing did not find my papers’ findings appropriate and above reproach then let them either retract the results of my work or concur with my findings using the editorial mode and stop this charade.
- IT APPEARS THAT DERMATOLOGISTS HAVE GOTTEN LAZY AT THE EXPENSE OF PUBLIC HEALTH: My fellow dermatologists continue to write prescriptions for the corticosteroids that continue to endanger RSS patients. Why have they also continued to write prescriptions for the “new” side-effect ridden drugs that I mentioned above and needlessly expose the patients? In a recent Academy of Dermatology Journal article looking again at a new drug intervention, the drugs cited as being used previously by these RSS patients included systemic corticosteroids, cyclosporin, mycophenolic acid, azathioprine, phototherapy, methotrexate, interferon gamma, omalizumab, and calcineuin inhibitors and this was only in six patients. My evaluation of the patients’ histories was that they were all steroid addicted.