Sunday, 8 July 2018

NO to Selexipag

Dear Readers,

Yesterday was a wonderful day for our superb England players reaching the Semi-finals, but for us PH'ers it was a VERY bad day!!

It has been announced that NHS England has again REJECTED a new drug that helps to improve quality of life to those with Pulmonary Hypertension. 

Extracts from Ferguson Mary. 07.07.2018. Press Release, exceptionally unjust and grossly unfair. PHocus2021 [online] 

The Pulmonary Hypertension Association (PHA UK) has been campaigning hard for Selexipag to be available in England, following positive decisions in Scotland and Wales. Today, 7th July, NHS England announced that an earlier decision not to approve the drug would be upheld.

Iain Armstrong, chair of the PHA UK, said: “As a patient organisation we know the rejection of this drug is exceptionally unjust and grossly unfair. The symptom burden of pulmonary hypertension is substantial, so access to any drug that may improve outcomes for these patients is vitally important for their health and wellbeing. An urgent review is needed on decisions regarding new therapies available for PH currently blocked or deferred by national funders. As a PH community we want the same equality and access to treatment as other disease areas like cancer. We are extremely disappointed by this decision and as a dynamic patient organisation we will continue to fight for equality and equity of access to service provision in the UK.”

I also contributed to this press release by saying, 
“Living with PH is difficult enough without having drugs being rejected. My message to NHS England commissioners is this: How do you think it makes us feel knowing there are drugs out there that can keep us stable and you’re keeping them from us?

“Every day we struggle to live a ‘normal’ life with PH. Think about what we have to go through – the chronic pain and fatigue, the severe breathlessness, the tears, the frustration and anger and maybe you would understand why I, as a PH patient, am distraught at this decision. You can’t put a price on a life – but you’re making us pay with ours.”

Selexipag, also known as Uptravi, helps to relax and widen the pulmonary arteries, relieving symptoms of pulmonary hypertension and slowing down progression of the disease. It is taken as a tablet, providing an alternative for the first time to drugs usually only available intravenously or by inhalation.

To read the full press release, click here

It is going to be reviewed again in November but as always, we thankfully have the PHA UK fighting for us and they will continue fighting until this drug is approved! Let's hope November will be the month of celebrating my birthday and the approval of Selexipag! #NoCureAlwaysHope

Thank you for reading.

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