CategoryPolitics, campaigns and information

“Useless Lives” – the Dark Story of MS and the Nazis

At the start of the UK Disability History Month, let us not forget… By Rachel Horne I never thought I would end up writing the words Nazi and multiple sclerosis in the same sentence.  Then I went to Auschwitz.  After passing under the infamous Arbeit Macht Frei “Work Sets You Free” gate, our group followed the tour guide into Block 5. There inside the dim, low-ceilinged room, I was...

Participating in Oratorio-Hand?

At the recent ORATORIO-HAND investigators’ meetings in Barcelona and Athens, several investigators’ made the point that it may be hard to retain people with PPMS in this trial because ocrelizumab has already been licensed to treat MS. I said YES and NO.  For one a lot of neurologists, HCPs and payers don’t think the original ORATORIO trial was positive. They think the trial was driven by the 25%...

Unaccountable

The European Union and its Institutions have been heavily criticised as part of the Brexit debate as been undemocratic and unaccountable to the man or woman on the street. However, it is only when their decisions impact on you, or your patients, that you realise that these critics have a valid point.  Last week the European Medicine Agency’s safety committee (PRAC or Pharmacovigilance Risk...

Alignment

Professor Gavin Giovannoni (Prof G) and his team of clinicians and researchers at Barts and at the Royal London Hospital — like many of their medical colleagues — are in frequent contact with pwMS (people with multiple sclerosis), many of whom are untreated. The reason that these pwMS are on no treatment is often economic. No treatment due to economic reasons and can occur in both developed as...

Rituximab combination therapy

A dark age is when society regresses; it goes backwards in time. The shocking revelations in last week’s New England of Journal of Medicine on the dire situation of some type 1 diabetics upset me and indicates we may be entering a dark age. An age when we are forcing our patients to turn their backs on innovation because they, or society, can’t afford to purchase the necessary medications...

Affordable DMTs

My post on the ‘Damp Squib’ has upset several close colleagues. I need to explain my reasons for doing it; the main one being is that I am very frustrated that change happens so slowly, whereas shit happens so quickly. The catalyst for our Barts-MS off-label initiative was my sabbatical 5 years ago and kicked-off with a blog post I did on the 3rd October 2014. I am ashamed that it is now 5 years...

Damp Squib

The Editors’ of The Lancet Neurology weigh-in with a commentary on the decision of the WHO committee not to recommend glatiramer acetate, fingolimod and ocrelizumab for the WHO EML (Essential Medicine List).  The Editors’ reiterate the usual recommendations to address the challenge of treating MS in resource-poor countries.  They acknowledge that adequate funding is needed for national...

Compounding Pharmacies

“It was the best of times, it was the worst of times, it was the age of wisdom, it was the age of foolishness, it was the epoch of belief, it was the epoch of incredulity, it was the season of Light, it was the season of Darkness, it was the spring of hope, it was the winter of despair, we had everything before us, we had nothing before us, we were all going direct to Heaven, we were all going...

Buyers Club

Have you seen the film Dallas Buyers Club? It is one of the movies that haunt me and keeps coming back to me in my thoughts and dreams. I now know why. Dallas Buyers Club is a 2013 American biographical drama about a patient diagnosed with AIDS in the mid-1980s when there were no licensed treatments for HIV. It was in an era when HIV infection was highly stigmatizing. Out of desperation, the main...

Off-label methotrexate

Prior to interferon-beta being licensed, I used to manage several patients under Prof. W. Ian McDonald who were insistent on being on treated with some form of DMT. The rationale was better to be on something rather than nothing. At the time there was some evidence that methotrexate was effective in MS and as it was relatively safe, so Prof. McDonald acquiesced. In retrospect, I have no idea if...

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