Asha died in March this year. She wrote this blog explaining the problems that she experienced trying to access a drug that she was ineligible for because she fell outside of the treatment lines guidance.   

There are many reasons why patients fall outside of treatment line guidance, but often it is because of an earlier treatment line they accessed.  Asha lived with metastatic breast cancer for around 10 years, for most of that time working as a full-time NHS A&E doctor.  When she was diagnosed, today’s first line NHS treatment did not exist and the drug that she was given is no longer used as a single therapy.  This then had implications which impacted on her later treatment lines.   

It is unbelievable that rationing medicines according to treatment line occurs in the NHS.  When patients are diagnosed with progression in their disease, they should be getting support.  Instead, they are navigating an awkward and laborious system. At a time when you have so many other health issues to deal with, this is wrong.   

The strict criteria of treatment lines need to stop and patients need to get the right drug at the right time to support them, whether NHS or private with a top up. This is not personalised care; we also need to roll out further genetic testing to identify which treatments are best for individual patients.  Every patient is different, no two cancers are identical.  Asha was failed by inflexible guidelines, and yet these guidelines remain in place. We call for oncologists to be given back control of sequencing treatments. 

There is a huge #CostOfLiving crisis which has been going on and still is going on for metastatic breast cancer patients and this needs to stop.   

My Journey to Alpelisib  

Oh, how I wished it were a walking journey! That I could deal with! In the last 6 months, my oncologist’s quest to get me to have this PIKC3A targeted drug was admirable and left us with a rollercoaster of emotions. 

In December 2022, when there was evidence that Paclitaxel chemo was not doing the trick, my oncologist and the local MDT decided that Alpelisib was the next logical step. Only snag was I’d developed brain mets and needed radiotherapy before anything else.  

His request was denied by the health board and then subsequently denied by the cancer board for independent funding. He then approached the drug company to ask for it on compassionate grounds.  

In the meantime, I was looking to procure Alpelisib privately from drug companies outside the UK. The cost proved cheaper than if I bought on the NHS Top Up scheme. The problem being that privately accessed drugs could not be dispensed on the NHS and everything related to my treatment would have to be done as a private patient. This included scans, blood tests, all other medications.  

Why couldn’t I get the medication on the NHS? Because of the indications for use as stipulated by NICE. I had already had too many lines of treatment.   

All this was happening whilst I was undergoing brain radiotherapy and with each passing day, it was another day without systemic treatment. Each step in the above process takes time and added more delay. And yes, the drug company then came to my oncologist and refused to grant me the medication for the same reason: too many lines of treatment. Can you imagine the mental anguish?  

My last hope was the NHS Top Up scheme. This was granted because another oncologist agreed to my oncologist’s recommendation.   

Now the delay was that I needed to be weaned off the steroids that I was on from the radiotherapy. More waiting.   

So, my husband and I decided to start a Go FundMe page, to raise money for the Alpelisib. I had been unable to work for the last year and we had used up our savings. I never wanted to ask for help or put my plight out there to the world, but what a response we had. Friends, strangers, and family contributed, raising the money we estimated we would need in three days! We are forever grateful.  

The steroids eventually stopped, we made the payment and I’ve started the Alpelisib.  

It still is not easy. Going through treatment for metastatic breast cancer is hard enough, together with all the emotional turmoil. Add into this mix the ‘fight’ to get treatment, makes it an emotional nightmare. I was exhausted….I am still.   

It is a scenario many of us face. The longer we live with this disease and new treatments are developed, the less we may be able to access them because of treatment line restrictions 

METUPUK is constantly striving to bring increased information to the public and campaign for access to more treatments.  

I will continue to advocate for them. Please support the charity.  

Twitter @AshUmJo