CategoryPolitics, campaigns and information

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...

Politician G

If I was a politician I would change the way drug regulation works to stimulate repurposing of off-label and unlicensed drugs. The wider MS community thinks off-label prescribing is accepting second-best. This is not the case.  The fact that a drug has a license or a label for a certain indication is because a pharmaceutical company has submitted an application to one of the regulatory...

Catastrophe

Have you heard the term catastrophic health expenditure or CHE before? You should have as many MSers and their families are exposed to catastrophic health expenditure.  CHE occurs when the spending on health exceeds a pre-defined percentage of a person’s or household’s capacity to pay. CHE has a massive impact on MSers’ lives and usually discourages them from using healthcare services and often...

HSCT and fake news

I post to manage expectations and counteract fake news.  There is a group of pro-HSCTers going around and saying HSCT is a cure for MS even in MSers with more advanced disease, i.e. it halts and reverses their disability. This is simply not correct and we have no published, peer-reviewed, data to support their position.  The meta-analysis below from Paulo Muraro and colleagues clearly...

Ask your GP

Should we expect your GP or family doctor to take on more of the day-2-day management of your MS? In the UK specialist physicians are called consultants because there was always too few of them to get their hands dirty with the day-to-day management of patients with special medical problems. General practitioners used to refer their patients to a specialist for a ‘consultation’ and...

Inequality

Prof G why the sudden and recent fixation with inequality?  There is overwhelming evidence that many health outcomes, including life expectancy, infant mortality, obesity, cancer survival rates, suicide, addiction and many more are linked to the level of economic inequality within society. In short, greater economic inequality leads to worse health outcomes.  Inequality does not necessarily refer...

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