Before natalizumab and after natalizumab; general neurologists in the UK need to see the transformation. #MSBlog #ClinicSpeak
"I am at a MS meeting in London and there has been some discussion about general neurologists holding patients with MS in their general practice for some years before referring, them onto the MS Service, for a DMT assessment. These referrals are happening too late, often after the person with the disease has lost brain and/or spinal cord and has irreversible disability. Why is this occurring? I think this is UK-specific problem and is the legacy of NICE and the Department of Health's risk-sharing scheme. When the interferons and glatiramer acetate were turned down by NICE, as not being cost-effective, the neurology community interpreted this as these treatments being ineffective. This is not the case; NICE said they were effective, but not cost-effective. Once the risk-sharing scheme was launched pwMS could only access DMTs via specialist units and hence the average neurologist has not seen the transformation natalizumab has made to the management of MS. I now refer to the management of MS as being in the 'before natalizumab' (BN) and 'after natalizumab' (AN) era."
"Natalizumab is the DMT that transformed the field of MS. On natalizumab not only have we seen the majority of patients becoming free of disease activity (NEDA), but a significant number have seen improvements in their disability. Because pwMS on natalizumab are not being followed in general neurology clinics general neurologists have not seen this transformation in care and outcomes. If only they could see what a difference early effective treatment has made to pwMS things would be very different."
"Who is at fault then for general neurologists not referring pwMS to MS services sooner? I think we the wider MS community are at fault. We need to engaged and educate our colleagues and make it clear to them that the sooner they refer their patients for an assessment the better the outcome. They need to know that natalizumab is only the beginning of the transformation; some of us are even beginning to have the discussion of potential 'MS cures'. We have come so far, but clearly have many miles to go before we sleep."
Stopping by Woods on a Snowy Evening
BY ROBERT FROST
Whose woods these are I think I know.
His house is in the village though;
He will not see me stopping here
To watch his woods fill up with snow.
My little horse must think it queer
To stop without a farmhouse near
Between the woods and frozen lake
The darkest evening of the year.
He gives his harness bells a shake
To ask if there is some mistake.
The only other sound’s the sweep
Of easy wind and downy flake.
The woods are lovely, dark and deep,
But I have promises to keep,
And miles to go before I sleep,
And miles to go before I sleep.