A Revision of the Treatment Options in Acromegaly

This is a most interesting and accomplished talk by Professor John Wass, one of the world’s foremost experts in acromegaly, a serious illness caused by a tumour of the pituitary gland, that results in too much growth hormone.

It’s a ‘must view’ video for all physicians who treat patients with acromegaly. It’s also important for acromegaly patients to watch, although some may be upset by parts of the content. That, I am sure, was not the intention of Professor Wass, especially as his talk was aimed at medics, not patients.

During the talk Professor Wass commented that, despite the UK being a developed nation, the rate of control of acromegaly patients is “really very poor”, a situation he described both as “salutary” and “humbling”. For patients with uncontrolled acromegaly it will be even more humbling, since they will know first-hand that the condition can dramatically impair their quality of life, as well as potentially shortening it.

Professor Wass conceded that if surgery fails to control acromegaly, patients are often treated next with cabergoline, a drug that only works in about 20% of cases and might cause heart problems. It’s used because it’s the cheapest option; an indication that in the UK at least, cost more than clinical efficaciousness can influence treatment options. Does this provide a clue as to why so many patients with acromegaly are not adequately controlled? Certainly, if my car broke under warranty and the manufacturer offered a cheap replacement part that only worked in 20% of cases, and could at the same time damage the engine, I would not be happy. Patients are not happy to be offered the cheapest, least effective option, especially in the world’s sixth richest economy.

Neither will acromegaly patients derive much comfort if they learn after-the-event that they were treated by an inexperienced surgeon, now it’s understood, as Professor Wass’s talk demonstrated, that their operations mostly failed as a result. Nor those who were urged to have radiotherapy, only to discover from this talk, maybe for the first time, that doctors gave this treatment “without thinking”. With the benefit of hindsight, as Professor Wass advised in his talk, it’s now known that conventional radiotherapy often doesn’t work, and even years later, can cause serious brain and pituitary damage, as well as result in tumours in some patients.

Of course, doctors have to learn, but often its patients who are the guinea pigs for that learning and who pay the highest price for the gaining of the new knowledge. Armed with this knowledge, however, patients also need to be alert. Ignorance in the past may have been an excuse for doctors offering acromegaly patients cheap, ineffective or potentially harmful treatments and procedures, but this can no longer be acceptable. In the internet and YouTube age, information provided to doctors is now available to patients too. We all have to use it wisely.

      -Jon Danzig

Faces of Acromegaly

There was a study published recently about how a computer can be better than a doctor at diagnosing acromegaly (Early diagnosis of acromegaly: computers vs clinician, PDF) based on photos of acromegaly patients.  I thought that study was really exciting, because it means that potentially one day, anyone with a webcam can be diagnosed!  Of course, the system is not perfect yet, but if it helps encourage people who suspect acromegaly to get a blood test and/or MRI, that means their diagnosis and potential for a cure is that much closer. On the second page of the report, there is a photo of a pair of twins, one who has acromegaly and one who does not, which I thought was fascinating.  There's lots of really interesting info about acromegaly in general, such as, "As the prevalence of a disease in a population rises, the outcome of screening becomes more successful. In the last few years, the presumed prevalence of acromegaly has risen from about 50 per million subjects to 106, 124 and 1034 per million in three separate investigations."  The article is well written and surprisingly easy to read, even for those without a medical/computer science background so give it a look.

The New York Times published an article about faces last week, which briefly mentioned acromegaly as one of the diseases that can be diagnosed by looking at the face: "... a very broad forehead and large nose may signal acromegaly, a dangerous condition caused by too much growth hormone."  I wish they also mentioned jaw enlargement, but I'm glad it was mentioned at all.  Hopefully the article will still help raise awareness of the disease, and someone can get diagnosed earlier.  I wonder if plastic surgeons know about acromegaly, and they refer their patients to an endocrinologist before going ahead with performing their nose jobs/botox or whatever.