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News and Blog

Date:
10-02-13

Author:
Empower

Empower: Access to Medicine in the Sunday Times

Empower: Access to Medicine in the Sunday Times

Lois Rogers, a Sunday Times journalist who chaired Empower’s Roundtable debate in September, interviewed Les Halpin about the campaign.

The piece looks at Les’ professional background and his diagnosis with Motor Neurone Disease, it also describes his dismay at discovering the “comparatively little research being carried out on the fatal degenerative condition.”

The Sunday Times also describes how Les is “one of an estimated 3.5m people in Britain suffering from a variety of “rare” diseases that are considered uneconomic for research efforts by major drug companies.

On the subject of pharmaceutical companies’ reticence to invest in rare disease, Les says:

Pharmaceutical companies are not interested in so-called rare diseases because the costs of developing new treatments are just too high . . . A lot of academics know about this and are concerned, but nothing’s being done.

We need people to get together. I’ve had luck and opportunities in my life. Making this happen is something I can give back.

The article also directly quotes Geoffrey Clifton-Brown MP from his Westminster Hall debate on 23rd January.

Opening up the discussion around the lack of availability of effective drugs for rare and life-threatening diseases is a vital first step on the path towards accelerating new innovative drugs


You can read the article in full here. Please note the Sunday Times is subscription only.

Comments

  • Good morning,
    I am a Director at Daval International & we have a drug in development, AIMSPRO, which has just successfully completed two proof of concept clinical studies in scleroderma and in secondary progressive multiple sclerosis. There is a clinical Investigator Initiated Study evaluating the safety & efficacy of AIMSPRO for ALS or with clinically proven MND being undertaken in London & this has treated 21 patients so far, with some very encouraging results.
    Due to the early efficacious evidence presented to date & the lack of any serious side-effects to the therapy, the MHRA has granted AIMSPRO a “Specials” Licence. This allows the drug to be prescribed by UK doctors on a named patient basis to treat patients for “unmet medical needs” where there is nothing else available or when all other options have shown to have no effect. It is also available in Australia under Categories A and B of the TGA’s Special Access Scheme.
    Please advise if I, or my company can work with Empower in any way? We have been trying for years to bring some of what Empower is trying to achieve to the attention of the health authorities and national government, so I hope that we can pool some of our efforts together and strengthen the campaign.
    I look forward to hearing from you.
    Edward Jensen
    .(JavaScript must be enabled to view this email address)

    Edward Jensen 10-02-13 12:58pm

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