[Ip-health] Consequences of high cancer drug prices in the UK: Stacie Lewis on is she cost effective to treat?

Jamie Love james.love at keionline.org
Wed Apr 29 09:24:13 PDT 2015

The primary method of controlling drug prices today is to restrict or
withhold reimbursements, or to increase patient co-pays, so people can't
afford the co-payment.  We think patients need to press governments to stop
using them as hostages, and to do something else to curb prices.   This is
one woman's story, but there are so many like this.



The Guardian

My plea to the NHS: decide whether or not my life is worth saving, and call
Stacie Lewis

Wednesday 29 April 2015

Wednesday 29 April 2015 11.01 EDT Last modified on Wednesday 29 April 2015
11.09 EDT
I have leukaemia. I’m a mum. A second bone marrow transplant is my only
chance but the NHS must approve it. Six weeks on I’m still in the dark,
waiting …

-----Photo caption: Stacie Lewis, above. ‘No word on how long the decision
will take. This wait is psychological torture. I am really struggling.
Emotionally, I cannot cope.’ Photograph: John Goodman--------

Two years ago, my world fell out from under me when I was diagnosed with
acute myeloid leukaemia.

I had no idea. The day my GP phoned and asked me casually if I might be
able to make my way up to King’s College hospital that afternoon for
further tests, I had been on my way to the leisure centre. I continued on
and swam 30 laps before I arrived [at the hospital].

When the doctors told me, the first words out of my mouth were: “But I
don’t have life insurance.” I felt a dread, as if Death with his scythe
lurked just behind me. “My children,” I thought over and over again. “My

Are decisions made within NHS England based on money, or what is the best
treatment to save my life?
It was a basement office. A slender window, high up on the wall, separated
me from the passing of people’s ankles. I begged them: “Please, I can’t
leave without some good news.” “You are young,” the consultant said
encouragingly. “Only 40 years old. You are otherwise healthy. You have
options. There are treatments. And you will be seen by one of the best
teams in the world.”

It wasn’t a light boast. The haematology team at King’s College hospital
performs more transplants in the UK than any other hospital. One of my
consultants, for example, is developing a groundbreaking leukaemia vaccine.
It is the largest bone marrow transplant centre in Europe. People come from
all over the world to be treated at King’s, and my one bit of luck was that
King’s was my local hospital.

My care at King’s was outstanding. Six months later, I received a bone
marrow transplant and my recovery progressed without complication. After
the hair loss, the fatigue and many dark days, there began to be days of
lightening hope. Tentatively, I made plans again. I began to worry over
normal things, such as how my disabled daughter would cope with travelling
abroad. I also started writing again and even swimming, which I’d really

In addition to a terrifying wave of emotions, I felt foolish when I came
out of remission. So ungrateful for those months of freedom.

Again, that basement. Again, an enveloping dread. I became conscious of my
husband’s hand gripping my knee. My eyes darted about the room. My
consultant spoke gently about treatments moving forward, only this time
they would probably only extend my life, not save it. Except – and here
they used words like “rare” and “exceptional case” – there was one option
that could save me: a second bone marrow transplant. The team had had a
lengthy discussion about it, and they were unanimous: I should have it.
But, it wasn’t up to them. It was up to NHS England. I sobbed. I drowned in
sobs. What, I asked, is NHS England?

My doctor took her time to try to reassure me about the process, though I
was barely able to follow. How they’d fill out an individual funding
request (IFR) on my behalf. It would take about two weeks. The Tuesday
after Easter they’d have a decision, we were told. Day after day, I sat at
home waiting for the call. It was meant to be two weeks. It’s six weeks
now. No word on how long the decision will take. This wait is psychological
torture. I am really struggling. Emotionally, I cannot cope.

Then I made a discovery that shook my confidence further. Online, I found a
blank application for the IFR to NHS England. Questions on the form

9b. If this treatment were to be funded for this patient on an individual
basis, would the decision set a precedent for other requests?

11. What is the evidence base for the clinical and cost
effectiveness/safety of this procedure/treatment?

17. What is the cost of the treatment/procedure and how does this compare
with the cost of the standard therapy it replaces? Please ensure you
include all attributable costs that are connected to providing the
treatment/procedure eg drug/staff/follow-up/diagnostics etc.

I know these questions have to be asked. Bone marrow transplants are
expensive. Estimates I’ve been given are around £100,000. That’s a
tremendous amount of money.

But I have some questions too: 1. What is my life worth? 2. Are decisions
made within NHS England based on money, or what is the best treatment to
save my life?

As the reality of my complete dependency on the NHS sinks in, I begin to
wonder. Over the past few years, I’ve read article after article about
billions of pounds being wasted in the NHS. Is that the same money that
could have funded treatments such as mine?

Every time I get that call, I think it is THE call. My heart rips open in
my chest
Here are the facts: there has been a £790m real-terms cut in cancer funding
for the NHS by the coalition government since 2010. According to a report
by the New Economics Foundation (NEF), the costs of the government
privitisation of the NHS “have been conservatively estimated at £4.5bn a
year – enough to pay for either 10 specialist hospitals, 174,798 extra
nurses, 42,413 extra GPs, or 39,473,684 extra patient visits to A&E”. Or,
for that matter, 45,000 bone marrow transplants. Are these, I wonder, the
real numbers that are stopping my doctors from treating me in the manner
they think is best? My worry turns to fear.

Weeks later, I am still in the dark. After being bumped around from office
to office, today I finally tracked down the number of someone at my local
commissioning support unit for NHS England – and they don’t even have a
record of my application. He did tell me they try to finish applications in
20 working days. It is now 42 days and counting.

This is an open plea to NHS England: On your website you describe yourself
as “transparent about the decisions we make, the way we operate and the
impact we have”. I have no idea of how you are forming your decision. I
have no point of contact at NHS England. My doctors send emails and leave
messages. As far as I’m aware, no one calls them back – and you certainly
don’t phone me.

But, four or five times a day my phone does ring and it says “Caller
Unknown”. Every time I get that call, I think it is the call. My heart rips
open in my chest and sometimes I sob simply at its ring.

Each day that passes is one that reminds me of all I will lose if the
answer is no. I used to be a teacher. How desperately I would like to be
one again. I’m a mother. I can’t even bear here to describe the sense of
loss I feel every day when I look at my children and wonder where we will
all be a year from now.

Call me. Please. I can’t take it.


James Love.  Knowledge Ecology International
KEI DC tel: +1.202.332.2670, US Mobile: +1.202.361.3040, Geneva Mobile:
+41.76.413.6584, twitter.com/jamie_love

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