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I suffer from an inherited syndrome named Marfan syndrome that is highly lethal if left untreated. Marfan syndrome is a connective tissue disorder caused by a faulty gene named FBN1 located on the 15th chromosome pair; the defective version of FBN1 causes the body to create an insufficiently elastic version of a key protein named fibrillin-1, which is an essential component of connective tissue. Marfan syndrome also causes overactivity of a hormone named Transforming Growth Factor beta (TGF-beta); the results of this are that organs throughout the body suffer structural defects, and persons with Marfan syndrome frequently present with unusual height, high myopia, highly arched palates, "crowded mouth" problems, skeletal abnormalities, sinus hypertrophy, and other problems that cannot be attributed to the defective version of fibrillin-1 coded for by the damaged version of FBN1 alone. Marfan syndrome is autosomal dominant -- if one parent has this syndrome, each of that parent's children has a 50% chance of inheriting the syndrome; if both parents have this syndrome, each of that couple's children will definitely inherit the syndrome. The most serious, life-threatening complication of this syndrome with which I present is an ascending aortic aneurysm; the aorta is the largest artery in the body, and an aortic aneurysm is a weak spot in the wall of the aorta that can disintegrate ("dissect") over a period ranging from a few seconds to several days. It can also rupture abruptly as opposed to dissecting; when this happens, the patient is usually dead within seconds. Very few people survive aortic dissection or rupture without surgery. When the weak spot reaches a size with which the cardiologists and other doctors are no longer comfortable, the standard of care consists of surgery to section the damaged aorta and to replace the aortic valves (if necessary) with artificial valves, or valves from the heart of a pig. The latter valves wear out and have to be replaced after a number of years, whereas artificial valves last a lifetime. Up until recently, there was not much that patients could do other than take beta blockers (which act indirectly, by reducing the pressure applied to the wall of the aorta with every heartbeat) and carefully monitoring the size of the aortic aneurysm. Recently, however, Dr. Harry Dietz (of Johns Hopkins) established that overactivity of TGF-beta is also at the heart of pathogenesis of this syndrome. Commonly prescribed drugs named angiotensin-II receptor blockers (or antagonists) (ARBs) can reverse the effect of TGF-beta, and administration of ARBs such as losartan, candesartan, and irbesartan has been shown to reverse aortic wall damage in pediatric cases (clinical trials with adults are yielding very promising results too). Consequently, I now take losartan 200 mg daily in divided doses of 100 mg; this finding has revolutionized the treatment of Marfan syndrome, and it is entirely possible that my aortic aneurysm will never require surgical correction. Unfortunately, there is nothing that can be done about the severe and permanent damage to my spine and joints that has already occurred. I suffer from levoscoliosis, facet joint arthropathy, disc compression, multilevel annular bulges, prominent spur formation, prominent Schmorl's nodes, disc desiccation, bone marrow signal changes, prominent osteophyte formation, marrow edema, and other indicia of severe degenerative changes; and I present with bone infarcts above and below each of my knees. I also suffer from osteoarthritis, which causes me severe and unremitting pain when not appropriately medicated. I also suffer from osteoporosis, which renders me an unsuitable candidate for treatment with rods inserted into my spine (as has been done in the case of many other patients suffering from osteoarthritis). In 1995, my primary care physician (PCP) in New York City prescribed OxyContin. We titrated the dose until I obtained excellent pain relief at 80 mg twice daily (total dose of 160 mg every 24 hours). This dose remained effective for many years; I have been lucky in that I have developed tolerance relatively slowly. My PCP also prescribed Norco 10 / 325 for breakthrough pain; Norco 10 / 325 consists of 10 mg hydrocodone mixed with 325 mg acetaminophen. My PCP was very generous, and I received 240 Norco tablets every month; in addition, my Norco prescriptions were almost always written with five refills. I moved to the UK about two years ago, and over the course of this timeframe, my doctor here in the UK increased my dose from OxyContin 120 mg twice daily to my current dose of 200 mg twice daily (total dose of 400 mg every 24 hours). This is definitely a high dose - I am receiving high dose opioid therapy. I cannot overemphasize the fact that I do not abuse my medications. My doctor here in the UK trusts me with an eight-week supply of my medications, which means that I take home a total of 224 OxyContin 80 mg tablets and 112 OxyContin 40 mg tablets every eight weeks. She also prescribes OxyNorm (named OxyIR in the US) 10 mg and 20 mg capsules for breakthrough pain, and gives me a total of 168 OxyNorm 10 mg capsules and 168 OxyNorm 20 mg capsules every eight weeks. In addition to this, she prescribes the UK equivalent of Tylenol #3 with codeine; I receive a total of 448 Co-codamol tablets every eight weeks. When the breakthrough pain is relatively mild, I take the Co-codamol tablets; on the other hand, when the breakthrough pain is severe, I take the OxyNorm 10 mg and OxyNorm 20 mg capsules. If these quantities sound excessive, it is because doctors in the US are notorious for UNDERTREATING chronic pain. This is not news; several studies have confirmed that there is an appalling tendency on the part of doctors in the US to avoid prescribing opioids and opiates, even in those cases where the prescription of such drugs is clearly indicated. The terms "opiophobia" has been coined to describe the shocking tendency of so many doctors in the US to avoid prescribing drugs from this class; about 20% of family practice physicians do not even bother to order the triplicate prescription blanks that are required in the US for the prescription of drugs from this class! Doctors in the US wrongly assume that addiction and physical dependence are the same thing; they are NOT the same thing, and the fact that doctors, of all people, fall into this trap is testament to the ignorance that plagues so many doctors with respect to pain management and the prescription of drugs from this class. This is not entirely the fault of the doctors. The "war on drugs" has been conflated with the legitimate prescription of powerful analgesics from the opioid and opiate classes of drugs, and many doctors feel under constant threat of being audited by the respective state boards of health and by the Drug Enforcement Administration (D.E.A.) whenever they contemplate prescribing opioids and opiates. This situation is both ludicrous and tragic; politicians and petty bureaucrats, uninhibited by wisdom, knowledge, or experience, make decisions as to what constitutes the "excessive" prescription of opioids and opiates, and then impose these determinations on medical professionals who have spent seven years or more obtaining hard-earned professional qualifications. It is little wonder that so few doctors are willing to prescribe as many Schedule II painkillers as they deem necessary. (Schedule II painkillers include pure codeine, pure dihydrocodeine, pure hydrocodone, pure oxycodone, and other opiates and opioids that are not compounded with acetaminophen. Schedule III painkillers include many of the weaker opioids and opiates compounded with acetaminophen. For example, pure codeine is a Schedule II medication, whereas Tylenol with Codeine #3 is a Schedule III medication. Schedule II prescriptions may not be issued with refills; every time the patient needs another month's supply of the medication concerned, the doctor has to issue an entirely new prescription. Schedule III prescriptions, on the other hand, may be issued with up to five refills. Schedule II prescriptions have to be written up on triplicate prescription blanks - one copy of the prescription is retained by the doctor, one copy is retained by the pharmacy, and one copy is retained by the state department of health. Schedule III prescriptions, on the other hand, may be written up on ordinary prescription blanks. There is therefore an understandable, but very unfortunate, tendency on the part of doctors in the US to prescribe large quantities of weak opioids and weak opiates compounded with acetaminophen, as opposed to prescribing more powerful opioids and opiates unadulterated with acetaminophen; the result is that a large number of patients end up taking large quantities of acetaminophen that, at best, are useless to them, and at worst, are damaging to their livers.) When prominent personalities such as Rush Limbaugh and (possibly) Michael Jackson are found to have abused OxyContin, they do an incalculable disservice to those men and women who are in genuine need of this particular medication, as well as to concerned friends and relatives of patients who take this medication. Following Michael Jackson's death, and the questions raised about OxyContin (including newspaper articles describing OxyContin as "hillbilly heroin" and articles describing the "struggle" that various persons have had trying to wean themselves from OxyContin), well-meaning members of my immediate family badgered me for weeks, trying to get me to stop taking OxyContin, and describing the articles that they had read about the bad press that OxyContin has received, and the "chokehold" that OxyContin has had on the lives of other men and women. THANK YOU, I GET THE POINT - when an irresponsible fool abuses a drug such as OxyContin, the results are bound to be tragic and unfortunate. When Sonny Bono skiid into a tree at high speed whilst in a Vicodin-induced stupor, his wife insisted that Vicodin (hydrocodone mixed with acetaminophen) was a "dangerous" drug that "robbed people of their thought process" - without regard to the fact that the dumb fool should never have been performing high-speed physical exertions whist under the influence of hydrocodone in the first place! But I reserve unfettered, open contempt for Rush Limbaugh - an abusive, vicious bully, who had repeatedly and savagely mocked people suffering from substance-abuse problems, and who had attacked the Americans with Disabilities Act (ADA) precisely because this Act protects people whom Limbaugh refers to as "defectives" (his word to describe people addicted to drugs). This mealy-mouthed hypocrite had the effrontery to seek refuge in a drug rehabilitation center when news of his dalliance with OxyContin and hydrocodone preparations hit the fan. Instead of accepting personal responsibility for his behaviour (bullying his housekeeper, Wilma Kline, into diverting her husband's post-operative Vicodin prescription), Limbaugh actually blamed OxyContin and Vicodin for his downfall, insisting that there was something inherently dangerous about these particular drugs that forced him to abuse them. This variant of "the Devil made me do it" is particularly stomach-turning when it is uttered by moralistic bigots who hurl accusations against gay Americans (for example). To those persons who have become addicted to OxyContin - you have my sincere sympathy. However, please do not make the assumption that all people who take OxyContin will necessarily become addicted to this drug. I have encountered this mentality with depressing frequency, and it is frankly both arrogant and ignorant. PHILIP CHANDLER