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.”
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.
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.
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.
The specs: 2017 Ford F-150 Raptor
Price, base / as tested Dh220,000 / Dh320,000
Engine 3.5L V6
Transmission 10-speed automatic
Power 421hp @ 6,000rpm
Torque 678Nm @ 3,750rpm
Fuel economy, combined 14.1L / 100km
The specs
Engine: 77.4kW all-wheel-drive dual motor
Power: 320bhp
Torque: 605Nm
Transmission: Single-speed automatic
Price: From Dh219,000
On sale: Now
THE TWIN BIO
Their favourite city: Dubai
Their favourite food: Khaleeji
Their favourite past-time : walking on the beach
Their favorite quote: ‘we rise by lifting others’ by Robert Ingersoll
'Laal Kaptaan'
Director: Navdeep Singh
Stars: Saif Ali Khan, Manav Vij, Deepak Dobriyal, Zoya Hussain
Rating: 2/5
Most sought after workplace benefits in the UAE
- Flexible work arrangements
- Pension support
- Mental well-being assistance
- Insurance coverage for optical, dental, alternative medicine, cancer screening
- Financial well-being incentives
ELIO
Starring: Yonas Kibreab, Zoe Saldana, Brad Garrett
Directors: Madeline Sharafian, Domee Shi, Adrian Molina
Rating: 4/5
From Conquest to Deportation
Jeronim Perovic, Hurst
Call of Duty: Black Ops 6
Developer: Treyarch, Raven Software
Publisher: Activision
Console: PlayStation 4 & 5, Windows, Xbox One & Series X/S
Rating: 3.5/5
Results:
6.30pm: Handicap | US$135,000 (Dirt) | 1,400 metres
Winner: Rodaini, Connor Beasley (jockey), Ahmad bin Harmash (trainer)
7.05pm: Handicap | $135,000 (Turf) | 1,200m
Winner: Ekhtiyaar, Jim Crowley, Doug Watson
7.40pm: Dubai Millennium Stakes | Group 3 | $200,000 (T) | 2,000m
Winner: Spotify, James Doyle, Charlie Appleby
8.15pm: UAE Oakes | Group 3 | $250,000 (D) | 1,900m
Winner: Divine Image, William Buick, Charlie Appleby
8.50pm: Zabeel Mile | Group 2 | $250,000 (T) | 1,600m
Winner: Mythical Image, William Buick, Charlie Appleby
9.20pm: Handicap | $135,000 (T) | 1,600m
Winner: Major Partnership, Kevin Stott, Saeed bin Suroor
THE CARD
2pm: Maiden Dh 60,000 (Dirt) 1,400m
2.30pm: Handicap Dh 76,000 (D) 1,400m
3pm: Handicap Dh 64,000 (D) 1,200m
3.30pm: Shadwell Farm Conditions Dh 100,000 (D) 1,000m
4pm: Maiden Dh 60,000 (D) 1,000m
4.30pm: Handicap 64,000 (D) 1,950m
The biog
Age: 59
From: Giza Governorate, Egypt
Family: A daughter, two sons and wife
Favourite tree: Ghaf
Runner up favourite tree: Frankincense
Favourite place on Sir Bani Yas Island: “I love all of Sir Bani Yas. Every spot of Sir Bani Yas, I love it.”
More from our Neighbourhood series:
COMPANY PROFILE
● Company: Bidzi
● Started: 2024
● Founders: Akshay Dosaj and Asif Rashid
● Based: Dubai, UAE
● Industry: M&A
● Funding size: Bootstrapped
● No of employees: Nine
Abu Dhabi racecard
5pm: Maiden (Purebred Arabians); Dh80,000; 1,400m.
5.30pm: Maiden (PA); Dh80,00; 1,400m.
6pm: Sheikh Zayed bin Sultan Al Nahyan National Day Cup (PA); Group 3; Dh500,000; 1,600m.
6.30pm: Sheikh Zayed bin Sultan Al Nahyan National Day Cup (Thoroughbred); Listed; Dh380,000; 1,600m
7pm: Wathba Stallions Cup for Private Owners Handicap (PA); Dh70,000; 1,400m.
7.30pm: Handicap (PA); Dh80,000; 1,600m
england euro squad
Goalkeepers: Dean Henderson (Man Utd), Sam Johnstone (West Brom), Jordan Pickford (Everton)
Defenders: John Stones (Man City), Luke Shaw (Man Utd), Harry Maguire (Man Utd), Trent Alexander-Arnold (Liverpool), Kyle Walker (Man City), Tyrone Mings (Aston Villa), Reece James (Chelsea), Conor Coady (Wolves), Ben Chilwell (Chelsea), Kieran Trippier (Atletico Madrid)
Midfielders: Mason Mount (Chelsea), Declan Rice (West Ham), Jordan Henderson (Liverpool), Jude Bellingham (Borussia Dortmund), Kalvin Phillips (Leeds)
Forwards: Harry Kane (Tottenham), Marcus Rashford (Man Utd), Raheem Sterling (Man City), Dominic Calvert-Lewin (Everton), Phil Foden (Man City), Jack Grealish (Aston Villa), Jadon Sancho (Borussia Dortmund), Bukayo Saka (Arsenal)
Living in...
This article is part of a guide on where to live in the UAE. Our reporters will profile some of the country’s most desirable districts, provide an estimate of rental prices and introduce you to some of the residents who call each area home.
More coverage from the Future Forum
EGYPT SQUAD
Goalkeepers: Ahmed El Shennawy, Mohamed El Shennawy, Mohamed Abou-Gabal, Mahmoud Abdel Rehem "Genesh"
Defenders: Ahmed Elmohamady, Ahmed Hegazi, Omar Gaber, Ali Gazal, Ayman Ahsraf, Mahmoud Hamdy, Baher Elmohamady, Ahmed Ayman Mansour, Mahmoud Alaa, Ahmed Abou-Elfotouh
Midfielders: Walid Soliman, Abdallah El Said, Mohamed Elneny, Tarek Hamed, Mahmoud “Trezeguet” Hassan, Amr Warda, Nabil Emad
Forwards: Ahmed Ali, Mohamed Salah, Marwan Mohsen, Ahmed "Kouka" Hassan.
MATCH INFO
Bangla Tigers 108-5 (10 ovs)
Ingram 37, Rossouw 26, Pretorius 2-10
Deccan Gladiators 109-4 (9.5 ovs)
Watson 41, Devcich 27, Wiese 2-15
Gladiators win by six wickets
Tearful appearance
Chancellor Rachel Reeves set markets on edge as she appeared visibly distraught in parliament on Wednesday.
Legislative setbacks for the government have blown a new hole in the budgetary calculations at a time when the deficit is stubbornly large and the economy is struggling to grow.
She appeared with Keir Starmer on Thursday and the pair embraced, but he had failed to give her his backing as she cried a day earlier.
A spokesman said her upset demeanour was due to a personal matter.
Living in...
This article is part of a guide on where to live in the UAE. Our reporters will profile some of the country’s most desirable districts, provide an estimate of rental prices and introduce you to some of the residents who call each area home.
Ferrari 12Cilindri specs
Engine: naturally aspirated 6.5-liter V12
Power: 819hp
Torque: 678Nm at 7,250rpm
Price: From Dh1,700,000
Available: Now
French business
France has organised a delegation of leading businesses to travel to Syria. The group was led by French shipping giant CMA CGM, which struck a 30-year contract in May with the Syrian government to develop and run Latakia port. Also present were water and waste management company Suez, defence multinational Thales, and Ellipse Group, which is currently looking into rehabilitating Syrian hospitals.
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Bundesliga fixtures
Saturday, May 16 (kick-offs UAE time)
Borussia Dortmund v Schalke (4.30pm)
RB Leipzig v Freiburg (4.30pm)
Hoffenheim v Hertha Berlin (4.30pm)
Fortuna Dusseldorf v Paderborn (4.30pm)
Augsburg v Wolfsburg (4.30pm)
Eintracht Frankfurt v Borussia Monchengladbach (7.30pm)
Sunday, May 17
Cologne v Mainz (4.30pm),
Union Berlin v Bayern Munich (7pm)
Monday, May 18
Werder Bremen v Bayer Leverkusen (9.30pm)
RESULTS
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Brief scores:
Toss: India, opted to field
Australia 158-4 (17 ov)
Maxwell 46, Lynn 37; Kuldeep 2-24
India 169-7 (17 ov)
Dhawan 76, Karthik 30; Zampa 2-22
Result: Australia won by 4 runs by D/L method
More on Quran memorisation:
'Nope'
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GOLF’S RAHMBO
- 5 wins in 22 months as pro
- Three wins in past 10 starts
- 45 pro starts worldwide: 5 wins, 17 top 5s
- Ranked 551th in world on debut, now No 4 (was No 2 earlier this year)
- 5th player in last 30 years to win 3 European Tour and 2 PGA Tour titles before age 24 (Woods, Garcia, McIlroy, Spieth)
What sanctions would be reimposed?
Under ‘snapback’, measures imposed on Iran by the UN Security Council in six resolutions would be restored, including:
- An arms embargo
- A ban on uranium enrichment and reprocessing
- A ban on launches and other activities with ballistic missiles capable of delivering nuclear weapons, as well as ballistic missile technology transfer and technical assistance
- A targeted global asset freeze and travel ban on Iranian individuals and entities
- Authorisation for countries to inspect Iran Air Cargo and Islamic Republic of Iran Shipping Lines cargoes for banned goods
Silent Hill f
Publisher: Konami
Platforms: PlayStation 5, Xbox Series X/S, PC
Rating: 4.5/5
What is the FNC?
The Federal National Council is one of five federal authorities established by the UAE constitution. It held its first session on December 2, 1972, a year to the day after Federation.
It has 40 members, eight of whom are women. The members represent the UAE population through each of the emirates. Abu Dhabi and Dubai have eight members each, Sharjah and Ras al Khaimah six, and Ajman, Fujairah and Umm Al Quwain have four.
They bring Emirati issues to the council for debate and put those concerns to ministers summoned for questioning.
The FNC’s main functions include passing, amending or rejecting federal draft laws, discussing international treaties and agreements, and offering recommendations on general subjects raised during sessions.
Federal draft laws must first pass through the FNC for recommendations when members can amend the laws to suit the needs of citizens. The draft laws are then forwarded to the Cabinet for consideration and approval.
Since 2006, half of the members have been elected by UAE citizens to serve four-year terms and the other half are appointed by the Ruler’s Courts of the seven emirates.
In the 2015 elections, 78 of the 252 candidates were women. Women also represented 48 per cent of all voters and 67 per cent of the voters were under the age of 40.
Who was Alfred Nobel?
The Nobel Prize was created by wealthy Swedish chemist and entrepreneur Alfred Nobel.
- In his will he dictated that the bulk of his estate should be used to fund "prizes to those who, during the preceding year, have conferred the greatest benefit to humankind".
- Nobel is best known as the inventor of dynamite, but also wrote poetry and drama and could speak Russian, French, English and German by the age of 17. The five original prize categories reflect the interests closest to his heart.
- Nobel died in 1896 but it took until 1901, following a legal battle over his will, before the first prizes were awarded.
The specs: 2019 Subaru Forester
Price, base: Dh105,900 (Premium); Dh115,900 (Sport)
Engine: 2.5-litre four-cylinder
Transmission: Continuously variable transmission
Power: 182hp @ 5,800rpm
Torque: 239Nm @ 4,400rpm
Fuel economy, combined: 8.1L / 100km (estimated)
The Vile
Starring: Bdoor Mohammad, Jasem Alkharraz, Iman Tarik, Sarah Taibah
Director: Majid Al Ansari
Rating: 4/5
Abaya trends
The utilitarian robe held dear by Arab women is undergoing a change that reveals it as an elegant and graceful garment available in a range of colours and fabrics, while retaining its traditional appeal.
THE SPECS
Engine: 3-litre V6
Transmission: eight-speed automatic
Power: 424hp
Torque: 580 Nm
Price: From Dh399,000
On sale: Now
All you need to know about Formula E in Saudi Arabia
What The Saudia Ad Diriyah E-Prix
When Saturday
Where Diriyah in Saudi Arabia
What time Qualifying takes place from 11.50am UAE time through until the Super Pole session, which is due to end at 12.55pm. The race, which will last for 45 minutes, starts at 4.05pm.
Who is competing There are 22 drivers, from 11 teams, on the grid, with each vehicle run solely on electronic power.
Know before you go
- Jebel Akhdar is a two-hour drive from Muscat airport or a six-hour drive from Dubai. It’s impossible to visit by car unless you have a 4x4. Phone ahead to the hotel to arrange a transfer.
- If you’re driving, make sure your insurance covers Oman.
- By air: Budget airlines Air Arabia, Flydubai and SalamAir offer direct routes to Muscat from the UAE.
- Tourists from the Emirates (UAE nationals not included) must apply for an Omani visa online before arrival at evisa.rop.gov.om. The process typically takes several days.
- Flash floods are probable due to the terrain and a lack of drainage. Always check the weather before venturing into any canyons or other remote areas and identify a plan of escape that includes high ground, shelter and parking where your car won’t be overtaken by sudden downpours.
Our legal consultant
Name: Dr Hassan Mohsen Elhais
Position: legal consultant with Al Rowaad Advocates and Legal Consultants.
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Ain Dubai in numbers
126: The length in metres of the legs supporting the structure
1 football pitch: The length of each permanent spoke is longer than a professional soccer pitch
16 A380 Airbuses: The equivalent weight of the wheel rim.
9,000 tonnes: The amount of steel used to construct the project.
5 tonnes: The weight of each permanent spoke that is holding the wheel rim in place
192: The amount of cable wires used to create the wheel. They measure a distance of 2,4000km in total, the equivalent of the distance between Dubai and Cairo.
UAE currency: the story behind the money in your pockets
What is blockchain?
Blockchain is a form of distributed ledger technology, a digital system in which data is recorded across multiple places at the same time. Unlike traditional databases, DLTs have no central administrator or centralised data storage. They are transparent because the data is visible and, because they are automatically replicated and impossible to be tampered with, they are secure.
The main difference between blockchain and other forms of DLT is the way data is stored as ‘blocks’ – new transactions are added to the existing ‘chain’ of past transactions, hence the name ‘blockchain’. It is impossible to delete or modify information on the chain due to the replication of blocks across various locations.
Blockchain is mostly associated with cryptocurrency Bitcoin. Due to the inability to tamper with transactions, advocates say this makes the currency more secure and safer than traditional systems. It is maintained by a network of people referred to as ‘miners’, who receive rewards for solving complex mathematical equations that enable transactions to go through.
However, one of the major problems that has come to light has been the presence of illicit material buried in the Bitcoin blockchain, linking it to the dark web.
Other blockchain platforms can offer things like smart contracts, which are automatically implemented when specific conditions from all interested parties are reached, cutting the time involved and the risk of mistakes. Another use could be storing medical records, as patients can be confident their information cannot be changed. The technology can also be used in supply chains, voting and has the potential to used for storing property records.
Where to buy
Limited-edition art prints of The Sofa Series: Sultani can be acquired from Reem El Mutwalli at www.reemelmutwalli.com
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