In my previous post, The Anticipation… It’s Killing Us!, I spoke about Benlysta, the only drug specifically designed for Lupus patients in it’s 900 year existence. In particular I explained how in the UK the National Institute for Clinical Excellence (NICE) [*See note] has not approved Benlysta for use in the UK as:

The Committee concluded that belimumab could not be considered a cost-effective use of NHS resources.

In response to this, we have decided to fight back. A petition has been set up at (link further down the page) and the aim is 5,000 signatures. After some shameless plugging across all the forums I am involved, along with the help of my just as shameless advocates across the globe, we have managed to get 650 signatures in less than 24hrs.

But this isn’t enough.

As far as I’m concerned 5,000 is too few anyway. By my calculations there are upwards of 2,000 lupus patients in the UK, with each one having at least two people who would support them in this this becomes 6,000, the petition is not just open to the UK, it’s for anyone who wants to voice there opinion about this disgrace it then goes worldwide… go figure.

Although this doesn’t directly affect me at this point in time, there may become a day where “standard treatment” becomes ineffective, and personally I’d like to know that there will be another option available for me to try, rather than rolling over and putting up with it.

I find it disgusting how the possibility of adding a few years to someone’s life comes down to “cost-effectiveness”. On the estimation that 5% of UK patients will be suitable for treatment with Benlysta, we are talking approximately 100 people. Not the biggest burden on NHS resources…

…but what if one of those 100 was your mother, father, brother, sister, cousin, close friend, wife, husband?

How hard would you fight for the appropriate treatment?

Please sign the petition.

The Petition Site – Cover Benlysta
The Petition Site - Cover Benlysta




*perhaps the National Institute for Cost Effectiveness? a different acronym, notNICE?

  1. Annie Taylor says:

    My reply……..I am a mother, wife and worker with Lupus. Effective treatment keeps me functioning. Sadly this life saving treatment is being denied to other, wives, mothers, daughters and friends of millions of people in the UK because of government bean counting and lack of any compassion. To extend a valued life in a quality way is priceless. I am ashamed of this decision. Even Australia has approved Benlysta .This is a poor reflection on the British government, health service and the NICE. I think you can properly remove the the E from the acronym..this is NOT excellence in Health and Clinical Practice…

  2. Sharon says:

    as the daughter/niece of family members with lupus i understand the struggles and Lupus suffers should be able to get the best treatment possible to help them function for daily life

  3. Lupus Veteran says:

    I am equally shameless – I’ve plugged this everywhere I can think of!!

    • Lupus Veteran says:

      Wow – over 1000 signatures – and rising!!! Well done ‘Lupoid’ !!!

      • Lupoid says:

        If I could climb on my roof without the risk of it caving in or me falling off, I’d be up there shouting to the world… it’s important. And an absolute travesty that it’s come to this. If it were, fro example, a cancer drug that was not “cost-effective” it would be main headlines with worldwide outrage. Why should any other treatment be any different?

  4. kate lindsay says:

    Hi… ive been on the uk trial of this drug… and it has changed my life enormously!!…. im still receiving it from the drugs company… what happens now? do i go back to living in my bedroom?.. and for cost effectiveness… let me have 5 mins with those people and i will explain how its much more cost effective it is to have me as a contributing member of society….

  5. I am a retired nurse spent over 30 years in the field and I am disgusted when I read or hear about a medication that can improve someones lives or maybe cure what ever the disease they have.
    Here in the USA the FDA makes the decision as to what drug they will allow on the market and the Pharmacutical Companies charge an outrageous amount for the medication and then the Insurance companies make the final decision to let the patient take the medicine or they deny the patient, I have challenged people at the insurance Companies about their knowledge and some tell me they do not have ANY medical experience(and this is who makes decisions for us) however they do have Doctor’s on staff that review the patients medical records and they are really the ones that make the decision, I feel this is unfair because they are looking at writing on a piece of paper or a computer screen and NOT talking to the patient, we all are different and respond differently to medications.
    I am in favor of going back to the “good old days” when a Dr. prescribed something then the patient should get it and by not allowing this new medication to be made available to patients with Lupus is stupid because in the long run more money will be spent on different meds. and the need for the patient to be admitted to the hospital……in the end the one person that pays the price is the patient. WAKE up people and do the right thing after all it might be the decision makers family member that gets Lupus are they going to deny them??????

  6. Liliana says:

    I have lupus and am in the hospital…

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