In this series of blogs Len Woodward explains and describes how he became an aHUS advocate and where the journey has been taking him to this day.
Len Woodward was a founding Trustee of aHUSUK and a founding affiliate of the aHUS alliance. He is also a Director Trustee of aHUS alliance Global Action. By his own admission he is a reluctant patient advocate , it is something that he had not been prepared for, and which he has no natural inclination to do. But for nearly 8 years now that is what he has been doing. See more below.
A change in gear
“It’s a ‘no decision’. I said having read through an incoming e mail that morning.
“They said ‘no’.” my wife replied incomprehensively.
“ No ,they said ‘yes’.” I replied confusingly.
“They said ‘yes’?” she returned.
“ Yes” I confirmed, “but the Minister cannot make a decision now as he wants it all done again, but this time by NICE, so it is a ‘no decision’ until then.
“They” were the Advisory Group for National Specialised Services “affectionately” known as AGNSS ( “Agnes” ) . They had, after evaluating the case for nearly a year, recommended eculizumab for the treatment of aHUS patients in England.
AGNSS had gained an international reputation of excellence in the way it evaluated “Highly Specialised Therapies” (HST) , usually drugs to treat those with rare, complex, life threatening and life changing diseases. Eculizumab was the last drug that AGNSS would work on.
NICE was the National Institute for Clinical Excellence. NICE was often in the news when it had decided not to approve new drugs for those who were dying, or severely ill with no quality of life. Eculizumab was the first HST drug that NICE would work on and it was noway ready to do so.
The Minister was The Right Honourable The Earl Howe, Parliamentary Under- Secretary of State for Health. Earl Howe was the Health Minister who was introducing changes brought about by a controversial Act of Parliament which had been background noise when the AGNSS process was in full swing, but which now had jeapodised all the work that had been done.
What they were saying “yes” or “no” to as you can guess by now was whether a drug called Eculizumab, reputedly the most expensive drug in the world, could be made available in the NHS England for the treatment of atypical Haemolytic Uraemic Syndrome, aHUS , a very rare disease.
It was the morning of 19th January 2013.
The news that morning had been a game changer. Already nearly eighteen months had been devoted to something which had become a matter of life or death to our family. It marked a moment at which my family’s hitherto reticent involvement in patient advocacy went to a new level, up a gear, and would consume our lives for the next five years.
How had it happened and why was aHUS the cause?
NATIONAL INSTITUTE FOR HEALTH AND CARE EXCELLENCE (NICE) regarding Highly Specialised Technology Evaluation (HSTC)
Eculizumab for treating atypical haemolytic uraemic syndrome. Highly Specialised Technologies Guidance: HST1 (Pub: 28 January 2015)
Eculizumab for treating atypical haemolytic uraemic syndrome (aHUS): 2nd Evaluation Consultation Document (ECD)
Atypical haemolytic uraemic syndrome (aHUS) – eculizumab: Evaluation Consultation Document 2
Read the aHUSUK Comments on ‘Consideration of Evidence’, courtesy of NICE.org.UK
Highly Specialised Technology Evaluation: Eculizumab for the treatment of atypical
haemolytic uraemic syndrome (aHUS) Committee Papers
My Health Apps – their article on the Reluctant Advocate
Sharing Patient Group Experience Through Blogs – aHUS Alliance
Read this Series in Book format
The Reluctant Advocate, 2023 Edition (pdf)
Share via the newest edition via this Custom Link: https://bit.ly/ReluctantAHUSpdf
The Reluctant Advocate, Original edition (pdf)