METUPUK are saddened by the news that one of our members and friend Asha Umrawsingh has died.

Asha’s diagnosis and access to treatment was a roller coaster of how strict treatment lines are affecting drug access, highlighted by the challenges of her access to Alpelisib. She was denied the drug by her Health Board in Wales and then subsequently denied by the Cancer Board for independent funding. Why couldn’t Asha get the medication on the NHS? Because of the indications for use, as stipulated by NICE, that she had already had too many lines of treatment. Imagine navigating this while undergoing brain radiotherapy.  

Asha managed to access Alpelisib eventually via the NHS Top Up scheme. This was granted because another oncologist agreed to her oncologist’s recommendation.  Asha and her husband Stenny started a Go Fund Me page to raise money for Alpelisib. Friends, family and strangers contributed raising the money needed in three days!   

Going through treatment for metastatic breast cancer is hard enough, together with all the emotional turmoil. Add into this mix the jumping through hoops to get treatment, makes it an emotional nightmare. It is a scenario many of us face and drug access is still creating inequalities across the UK. Asha’s campaigning for drugs didn’t stop with Alpelisib, she then needed to campaign for access to Enhertu.  

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.   

Asha advocated for us and supported campaigning against treatment line restrictions.  In March 2023, she came to the House of Commons with our Darker Pink exhibition and other METUPUK Patient Advocates, talking to MPs about the issues with drug access, data and clinical trials. Asha’s MP Sarah Atherton attended the exhibition and spent time with Asha discussing the issues nationally and locally to Asha in Wrexham.  

We are sending love to Stenny and all who loved Asha. We will miss you so much. But we will continue to demand change with the issues we all raise as we try to navigate the issues that we see living with this disease. 

Love all your friends at METUPUK x