Untreatables: The cancer patients shunned by health care

Patients denied treatment on basis of cost and viability say fairer access to therapies is needed

Asha Umrawsingh. Photo: Gofundme

Asha Umrawsingh has secondary breast cancer, an incurable illness for which she seeks life-prolonging medicine.

But earlier this year she learnt that she could not get NHS access to a newly approved drug to treat a specific mutation of her of illness.

The drug, Alpelisib, was approved for NHS use in October 2022, and her oncologist recommended its use to treat a mutation called PIKC3A.

Her treatment history meant she did not fit the criteria for this specific therapy – and her oncologist’s application to the local health board was rejected, she told The National.

“Because I’d been on one pathway, I couldn’t get on to this one,” said Ms Umrawsingh, who was first diagnosed with secondary breast cancer in 2015. “In short, I’ve had too many previous lines of treatment.”

Despite the enormous breakthroughs in cancer treatments, some patients in the UK are struggling to gain access to life-prolonging medicine of their choice. They spend the final months or years of their lives filling in application forms for treatment approvals, fundraising online for private access to care, travelling for overseas treatment or advocating in parliament.

The reasons for this are varied. Some, like Ms Umrawsingh, are told they must continue a specific treatment pathway – even if this has stopped working and a new drug has become available. The clinician is often weighing the cost of treatment, probabilities of success and licensing regimes specific to the UK. Sometimes the rules are baffling to patients, who find that drugs that have been approved for one type of cancer have yet to be approved for their illness.

Alternatively, patients with incurable illness are deemed not ill enough to have access to treatment that is reserved as a second or third line option. Another hurdle is that new treatments, approved for use by the NHS, are yet to be included in the guidelines and pathways – a process which can takes months or years, according to experts.

“A lot of patients are doing self-advocacy. There was a point when you could depend on your doctor for everything, but we've realised that because the NHS is so swamped we have to do a lot of advocating for ourselves,” Ms Umrawsingh said.

“It's not just filling forms, but calling GPs, chasing up on scans and test results – it takes a lot out of you.”

Asha Umrawsingh, centre, with two secondary cancer patient advocates at the Houses of Parliament. Lemma Shehadi / The National

Ms Umrawsingh – who works as a medical doctor in Wales – crowdsourced online to help fund private access to the therapy, which costs up to £1,700 a month.

In May, she reported regaining her appetite after three months of treatment.

“I’ve seemed to turn a corner. The best news is that the medication is working,” she said.

As part of a new series on global health care, coinciding with the 75th anniversary of the NHS on Wednesday, The National spent months speaking to doctors, hospital managers and patients from the UK and overseas, to track shifts in how people are treated. Across the world, patients are becoming health nomads, either crossing borders to seek treatment or moving from public to private healthcare systems.

Jo Taylor, founder of the campaigning charity METUPUK, which advocates for secondary breast cancer patients, agreed that better access to drugs was needed. “There are many inequalities around approvals. We need to do something and make change,” she said.

About 92 per cent of cancer drugs submitted to the National Institute for Health and Care Excellence (Nice), which assesses value for money for the NHS in England and Wales, were approved in 2021-2022, according to the Royal College of Radiologists.

Once a treatment has been approved, the NHS has 90 days to make the drug available to patients. Nice then creates guidelines for the drugs, which NHS hospitals can chose to follow for their treatment pathways.

This means that the newest therapies may not be available on time, and when they are, patients such as Ms Umrawsingh, who have received existing treatments, may be excluded.

The challenges in gaining access to cancer drugs were debated in parliament in June.

The treatment for glioblastoma, a brain cancer, has not changed since it was introduced in 2005, due to lack of training and clinical trials for the disease, said MP Siobhain McDonagh during a debate in the House of Commons.

Dame Arlene Foster, former first minister for Northern Ireland, speaks to secondary breast cancer campaigners in parliament in March. Lemma Shehadi / The National

She had previously described accompanying her sister, the late Labour politician Margaret McDonagh, on regular trips to Germany to gain access to private cancer treatment for glioblastoma that was not available in the UK.

Ms McDonagh sought hyperthermic treatment, a targeted therapy in which the body temperature is increased to enhance the outcomes of chemotherapy, at a specialised clinic run by Dr Huseyin Sahinbas in Dusseldorf – a treatment which is not available in the UK.

The MP said: “There were times when I thought that I would not be able to get Margaret on the plane – that somebody would stop her because she was so unwell.

“There was one night when I stayed and stared at her, because I did not think she was going to make it through the night, and how would I explain that to anybody?”

This experience led Siobhain McDonagh to speak out against what she sees as a lack of progress in access to treatment for brain tumours. “Survival rates have not changed for brain tumours in 20 years [ …] there are nowhere near enough appraisals for new brain tumour drugs and nowhere near enough clinical trials,” she said.

Others echoed patients complaints that the criteria for treatment sometimes overlooked individual cases. “There needs to be flexibility in how drugs are allocated. It is not just a black and white, tick-box exercise – it never is. We need to focus on the circumstances of the individual,” said MP Jim Shannon.

Nice initiatives such as the Cancer Fund gives a limited number of patients access to drugs that are undergoing review, if they fit the criteria.

Experts highlighted that healthcare providers can prescribe Nice-approved treatments even if the guidelines have yet to be published.

“Medicines that have been evaluated through the technology appraisal programme have to be offered to patients as treatment options, even if not yet incorporated into Nice guidelines,” Paul Catchpole, director of Value and Access Policy at the Association of the British Pharmaceutical Industry, told The National.

“According to the NHS constitution, patients have a right to Nice-approved drugs 90 days after their approval.”

Yet some patients say that it is not only the speed of appraisals that needs to change, but the strict criteria for treatments which can limit the choices for individual cases.

“When you are on an NHS pathway, it's a bit like Monopoly, you can’t go back and collect £100 when you've passed GO - once you've been on a drug, you cannot go back on it,” said Ms Taylor.

Yorkshire breast cancer patient Anne Marie Pezone wrote in an online petition: “The guidelines are not individualised to the women needing these treatments and things need to change.”

Ms Pezone sought a targeted radiotherapy for a brain tumour, known as stereotactic radio surgery, after her breast cancer spread to the brain.

Then prime minister Tony Blair, right, and deputy prime minister John Prescott with Margaret McDonagh in 2004. Getty Images

However, the only treatment she was offered was whole brain radiotherapy, which she explained had challenging side effects.

“This is a very harsh treatment. I really wanted to change to a [targeted] treatment, as there are new treatments that can cross the blood brain barrier such as enhertu and tucatinib,” she told The National in an email.

But she was ineligible for these second and third-line treatments, she wrote, because the rest of her body was stable.

Patients seeking to access new therapies that are not available on the NHS can do so by joining clinical trials. But these are difficult to access, said Ms Taylor.

One METUPUK advocate reported spending £700 on fuel, train tickets and hotels to try to join a trial – money which would be reimbursed if she was accepted into the trial.

The absence of a single database for all the clinical trials happening in the UK adds more hurdles for women seeking treatment, said Ms Taylor.

“Clinical trials shouldn’t be used as a last resort,” she added.

Some patients have successfully campaigned for new treatments to become available more quickly on the NHS.

Philippa Hetherington, who died aged 37 of metastatic breast cancer in 2022, campaigned for a treatment called Trodelvy, which, at the time of diagnosis had not been licensed for use in the UK.

She had raised more than $110,000 online for various private treatment options including Trodelvy and other drugs that were licensed in the UK but not available on the NHS.

During a witness testimony at the House of Commons, she said: “When you have brain metastases, there are certain NHS rules about how many the NHS will treat with what is called targeted radiation, and it is quite a small number.”

The drug was approved for NHS use in April 2022, months before Ms Hetherington died.

With so many patients compelled to self-fund for treatment in the UK or abroad, better information is needed so that they don't spend money on a drug that may not work or cause harm, said Ms Taylor.

“A lot of people are setting up GoFundMe pages, they hear about clinics overseas, but they’re not necessarily provided with the right clinical information and knowledge about treatments” she said.