Untreatable: Cancer patients are shunned by healthcare

Asha Umrwasingh is suffering from secondary breast cancer, an incurable disease and she is seeking treatment to prolong life.

But earlier this year he learned he couldn’t get NHS access to a newly approved drug to treat the specific mutation of his disease.

The drug, Alpelisib, was approved for use by the NHS in October 2022, and his oncologist recommended using it to treat a mutation called PIKC3A.

Her medical history meant she didn’t meet the criteria for this particular therapy — and her oncologist’s application to the local board of health was rejected, he told National.

“Because I was on one path, I could not continue on this path,” said Ms Umrwasingh, who was first diagnosed with secondary breast cancer in 2015.. “In short, I’ve had too many treatments before.”

Despite major breakthroughs in cancer treatment, some patients in the UK are struggling to gain access to the life-extending treatment of their choice. They spend the last months or years of their lives filling out applications for consent to treatment, raising funds online for personal access to treatment, traveling for treatment abroad or advocating in parliament.

The reasons are various. Some, like Ms Umrwasingh, were told they had to continue with a certain course of medication – even if it had stopped working and a new drug became available. Doctors often weigh the cost of treatment, the chances of success and the licensing regime specific to the UK. Sometimes these rules confuse patients, who find that a drug that has been approved for one type of cancer has not been approved for their disease.

In addition, patients with incurable disease are considered ill enough to gain access to the treatment provided as a second or third line option. Another hurdle is that new treatments, which are approved for use by the NHS, have not yet been included in guidelines and pathways – a process that can take months or years, experts say.

“Many patients do self-advocacy. There are times when you can depend on your doctor for everything but we realized that because the NHS is so busy we have to do a lot of advocacy for ourselves,” said Ms Umrwasingh.

“It’s not just filling out forms, it’s calling GPs, chasing up scans and tests – it takes a toll on you.”

Asha Umrwasingh, center, with two companions of the second cancer patient at Parliament House.  Lemma Shehadi / National

Ms Umrwasingh – who works as a medical doctor in Wales – crowdsourced online to help fund private access to therapy, which can cost up to £1,700 per month.

In May, he reported his appetite returning after three months of treatment.

“Looks like I turned the corner. The best news is that the medicine is working,” he said.

As part of a new series on global healthcare, coinciding with the 75th anniversary of the NHS on Wednesday, National spent months talking to doctors, hospital managers and patients from the UK and abroad, to track changes in the way people were treated. Around the world, patients are becoming healthcare travelers, either crossing borders to seek treatment or moving from the public to private healthcare systems.

Jo Taylor, founder of the campaign charity MetUP UK, which advocates for secondary breast cancer patients, agrees that better access to medicines is needed. “There is a lot of inequality around consent. We need to do something and make a change,” he said.

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

Once a treatment is approved, the NHS has 90 days to make the drug available to patients. Nice then created guidelines for the drugs, which NHS hospitals could choose to follow on their course of treatment.

This means that the latest therapies may not be available in a timely manner, and if they do, patients like Ms Umrwasingh, who have already received existing treatments, may be excluded.

The challenge of getting access to a cancer drug was debated in parliament in June.

Treatments for glioblastoma, a brain cancer, have not changed since their introduction in 2005, due to a lack of training and clinical trials for the disease, MP Siobhain McDonagh said during a debate in the House of Commons.

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

He previously described accompanying his sister, the late Labor politician Margaret McDonagh, on regular trips to Germany to gain access to private cancer care for glioblastoma that is not available in the UK.

Ms McDonagh sought hyperthermic treatment, a targeted therapy in which the body temperature is increased to improve chemotherapy outcomes, at a specialty clinic run by Dr Huseyin Sahinbas in Dusseldorf – a treatment she has no access to in the UK.

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

“There was one night when I stayed and looked at him, because I didn’t think he was going to make it through the night, and how do I explain that to anyone?”

This experience led Siobhain McDonagh to speak out against what she saw as a lack of progress in accessing brain tumor treatment. “Survival rates have not changed for brain tumors in 20 years [ …] there are not enough assessments for new brain tumor drugs and there are not enough clinical trials,” he said.

Others echo patient complaints that treatment criteria sometimes ignore individual cases. “There needs to be flexibility in how drugs are allocated. This isn’t just a black and white checkbox exercise – it never was. We need to focus on individual circumstances,” said MP Jim Shannon.

Good initiatives like the Cancer Fund give patients limited access to drugs under review, if they fit the criteria.

Experts highlight that healthcare providers can prescribe Nice-approved treatments even though the guidelines have not yet been published.

“Drugs that have been evaluated through a technology assessment program should be offered to patients as a treatment option, even if they are not yet included in the Nice guidelines,” said Paul Catchpole, director of Value and Access Policy at the British Association of the Pharmaceutical Industry. National.

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

Yet some patients say that it is not just the speed of judgment that needs to change, but the strict criteria for treatment that may limit options for individual cases.

“When you’re on the NHS line it’s like a monopoly, you can’t go back and take it back,” said Ms Taylor.

Yorkshire breast cancer patient Anne Marie Pezone wrote in an online petition: “Guidelines are not individualized for women who need this treatment and things need to change.”

Ms Pezone sought targeted radiotherapy for brain tumors, known as stereotactic radio surgery, after her breast cancer had 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 he offers is whole brain radiotherapy, which he explains has challenging side effects.

“This is very harsh treatment. I really want to change to a [targeted] treatment, because there are new medications that can cross the blood-brain barrier such as enhertu and tucatinib,” he said National in e-mail.

But he was not eligible for these second- and third-line treatments, he wrote, because the rest of his body was stable.

Patients wishing to access new therapies not available on the NHS can do so by participating in clinical trials. But this is hard to do, says Ms Taylor.

A MetUP advocate reported spending £700 on gas, train tickets and hotels to try to enter the trial – money that would be reimbursed if he was accepted into the trial.

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

“Clinical trials should not be used as a last resort,” he 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, was campaigning for a treatment called Trodelvy, which at the time of diagnosis had not yet been licensed for use in the UK.

He has raised over $110,000 online for a variety of personal care options including Trodelvy and other drugs that are licensed in the UK but not available on the NHS.

Healing ‘incurable’ children: Take a look inside London’s Zayed Center

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During witness testimony in the House of Commons, he said: “When you have brain metastases, there are certain NHS rules about how much the NHS will treat with what’s called targeted radiation, and the amounts are quite small.”

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

With so many patients forced to self-fund treatment in the UK or abroad, better information is needed, said Ms Taylor.

“Many people create GoFundMe pages, they hear about overseas clinics, but they are not given the right information,” he said.

Updated: July 04, 2023, 11:53 a.m

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