Cancer patient faces drug funding battle
A former fireman who is fighting cancer is also having to battle to get funding for a drug to buy him more time.Barry Humphrey saved lives during 25 years of service amid blazes and bombs in London.
A former fireman who is fighting cancer is also having to battle to get funding for a drug to buy him more time.
Barry Humphrey saved lives during 25 years of service amid blazes and bombs in London. Now he is pleading with Norfolk's health authority to prolong his own.
The 58-year-old from North Walsham has liver cancer and his only hope of delaying its spread is a new drug called Sorafenib. But NHS Norfolk has refused to pay for it.
It is a decision which his local MP, and Liberal Democrat health spokesman Norman Lamb is battling to get reversed, saying he was shocked that a deserving case was being denied treatment.
You may also want to watch:
The family, hospital doctors and politician are challenging why Mr Humphrey, is not considered to be an exception qualifying for funding.
His rare condition, where the liver is the primary seat of the disease, affects just 1 in 100,000 people - making them feel he is exceptional, and not likely to open a funding floodgate for NHS Norfolk.
- 1 'Know the waters are dangerous' - Rip tide warning following rescue from Norfolk beach
- 2 Covid Delta variant cases double in Norfolk
- 3 Aldi planning four new stores in Norfolk
- 4 'We love this street' - New deli opens in Cromer
- 5 New rules for coastal care home in special measures
- 6 Charity horse ride around north Norfolk estate planned
- 7 Rescued pony arrives at new home on celebrity's farm
- 8 Family's distress as Covid rules force double-jabbed mother into isolation
- 9 This charming village pub is worth travelling to from across Norfolk
- 10 Be lord of the manor: Site of forgotten mansion for sale for £2.3m
Mr Humphrey said: “They are playing with my life.
“Liver cancer is not a good one to get. Less than 5pc of patients are alive after five years.
“We are aware budgets are finite, but I am a rare case so it won't cost them a fortune. After paying my taxes all those years, you expect something back. At least let me try it to see if it works. It's the only hope we have got.”
NHS Norfolk said it could not comment on Mr Humphrey's case because of a confidentiality code.
But it confirmed it had turned down three out of five applications for the drug, with decisions based on clinical evidence.
Barry's fireman's days saw him deal with huge fires at Alexandra Palace and King's Cross tube station, the Clapham train crash, and bombs at the Stock Exchange and Moorgate. He rose to the rank of station officer and his long service, good conduct medal sits alongside that of wife Hazel, a former fire controller in Essex, as a mark of their combined half century of service.
After retiring to Norfolk in 2001, he drove boats for the disabled watersports activities charity the Nancy Oldfield Trust, and was a volunteer at the Happisburgh coastwatch station.
Hazel, who herself beat breast cancer after an operation and radiotherapy in 2000, worked in Cromer's Break charity shop.
Then last November Barry was diagnosed with cancer, which seems to have been sparked by catching Hepatitis C from a casualty during a fire rescue. It caused cirrhosis weakening the liver, resulting in the cancer.
Consultants at Addenbrooke's Hospital in Cambridge told him the tumour was too big to allow either surgery or a transplant, and that the only hope of extending his life expectancy was Sorafenib, which slows the cancer cell growth.
Although it has done well in tests, it has not yet been approved by the National Institute for Health and Clinical Excellence, which vets the effectiveness of new drugs.
Mr Humphrey said consultants felt he was a good candidate because he was still relatively young and active fit, and neither he or they had received a good explanation for the refusal.
His wife said she was “very upset, angry and confused” about how the health authority could say “no”.
Their story comes just days after the EDP revealed how pensioner David Blackett from Bunwell in south Norfolk was refused funding for a drug to help his battle against lung and kidney cancer, leaving him to spend £3,000 a month of his retirement nest egg on treatment.
Doctors have told the Humphreys however it would be unviably expensive for them to foot the bill themselves, and could see them having to pay for all his other treatment.
NHS Norfolk's head of prescribing and medicines management Ian Small said that until the NICE study was completed, the authority would only sanction a drug's use in exceptional cases, adding: “All exclusions are based on clinical evidence and discussion with the relevant clinicians.”
Where clinical evidence showed a treatment was not effective, or not necessary, NHS Norfolk would not normally fund it.
“There are finite amounts of funds and if NHS Norfolk funded treatments that are yet to have clinical evidence, it would not have the resources to fund other treatments which have proven effectiveness.”
Mr Lamb said he found it hard to accept the authority's decision, after clinicians had recommended Mr Humphrey should have the drug.
He would be backing the appeal, and said such cases were likely to become more common as health authorities faced the challenge of dealing with more drugs breakthroughs against their budget constraints.
The Humphreys are urging people to support an e-petition on the Downing Street website calling on the prime minister to make all cancer drugs that work freely available on the NHS. The petition which already has more than 900 signatures is at http://petitions.pm.gov.uk/Cancer-Drugs-All/