A doctor with stage four breast cancer is being refused access to potentially lifesaving treatment on the NHS.
Dr Asha Umrawsingh, 50, was first diagnosed with breast cancer in 2010 before going into remission, but in 2015, the 50-year-old woke up with a pain in her chest and was diagnosed with stage four breast cancer which had spread to her bones and lungs.
The A&E doctor has a tumour with a specific mutation called PIKC3A that requires a targeted drug, Alpelisib, to treat it.
Alpelisib is used to treat breast cancer that has spread to the tissues and lymph nodes around the chest, neck and under the breastbone and breast cancer that has spread to another part of the body such as the bones, lungs, liver or brain.
Dr Umrawsingh’s oncologist requested funding from the Betsi Cadwaladr university health board for the treatment, but the request was denied.
Alpelisib was approved for use in the UK in 2022 but it is not available to patients who have already received a separate treatment plan, according to National Institute for Health and Care Excellence (NICE) guidelines.
Due to the timing of Dr Umrawsingh’s diagnosis, she had already received a different line of treatment so is not eligible for the targeted drug treatment on the NHS.
The 50-year-old said her oncologist approached Novartis, the company that makes Alpelisib after the request for funding was refused, but the company has refused to grant the targeted treatment on compassionate grounds, meaning she has to purchase it on the NHS top-up scheme which provides money back on essential routine healthcare costs.
Dr Umrawsingh does not yet have a start date for the treatment, but she hopes it will be soon.
The 50-year-old from Wales has been off systemic treatment since December 2022 but days before Christmas she was told her cancer had spread further in the brain and she needed to start radiotherapy as soon as possible.
Her husband, Stenny, is now her sole carer, and she said their world has “fallen apart” as a result of the diagnosis.
Dr Umrawsingh launched a fundraiser via GoFundMe to allow her to access treatments outside the NHS and abroad, raising over £40,000 within three days.
She has now raised over £50,000, which she says means she will have the necessary funds for treatment for the next year.
The A&E doctor said without the donations, the next steps in her journey “would not be possible”.
“I live from scan to scan in three-month blocks” explained Dr Umrawsingh.
“I cannot describe the emotions and pain Stenny and I have had to endure. Cancer takes away so much, however, we will continue to hold on to the positive.
“Life itself is the greatest blessing we know and we will continue to make every moment count and keep smiling and living”.
Dr Umrawsingh said she has been “overwhelmed and humbled by the support. I am so grateful to the nurses at Wrexham Maelor Hospital for all their help sharing the fundraiser”.
The A&E doctor has not let her diagnosis hold her back. Last year she helped to launch a campaign calling on the Welsh Government to provide better support for people with metastatic breast cancer in Wales.
The petition, which gathered more than 14,000 signatures, calls for every person with metastatic breast cancer (MBC) in Wales to have access to a dedicated secondary breast cancer clinical nurse specialist. Currently, there is just one clinical nurse specialist for this type of cancer in Wales.
“I am a big believer in the need for patients to self advocate and a believer in advocating for people who are not being sign posted to the right services that they need. There is a big gap in care and resources avaialble to terminally ill people across the devolved nations”, said Dr Umrawsingh.
Dr Umrawsingh plans to use the funds to pay for medical bills and to donate to METUP UK, the only charity in the UK that advocates for Stage 4 Breast Cancer patients, as well as to the Shooting Star Unit at Wrexham Maelor Hospital where she has recieved treatment and works as a doctor.
Dr Nick Lyons, Executive Medical Director at Betsi Cadwaladr University Health Board, said: “We are unable to comment on individual cases.
“These requests are considered by an expert panel under the all-Wales individual patient funding request (IPFR) process.
“Because each patient is different, each case has to be individually assessed. When an IPFR is declined it may be for a number of considerations, including clinical reasons and the panel carefully consider the clinical situation and the evidence that is available.”
A Novaris spokesperson said: “At Novartis it is our priority to provide equitable access to innovative treatment for as many breast cancer patients as possible. We are pleased to have worked with NICE, NHS and our partners in clinical and patient communities to reach positive NICE recommendation for the targeted therapy alpelisib.
“Unfortunately there are instances, where a patient has a serious or life-threatening disease or condition for which all the currently available treatment options have been exhausted and enrolment into a clinical trial is not an option. Novartis “Managed Access Programs” (MAPs) refer to the mechanisms to provide access to any of Novartis’ products outside of clinical trials and before regulatory approval. As a company operating on a global scale we have a procedure for reviewing patient suitability for such programs.
“At a local level, we must respect all U.K. laws and requirements and therefore follow requirements set by health authorities. In this respect, it is important that we abide by considerations of UK healthcare commissioning policies and advice, such as the NHS’ published Free of Charge Medicines Schemes policy and Funding of Treatment outside of Clinical Commissioning Policy or Mandated NICE Guidance. In addition, Novartis follows the criteria for individual funding requests in line with the Funding of Treatment outside of Clinical Commissioning Policy or Mandated NICE Guidance.”
You can donate to the fundraiser here.
