NHS agrees to fully-fund drugs to help support Dan Evans, of Newark, suffering from a rare form of cancer
The NHS has agreed to pay for a combination of drugs that could save the life of a teenager with a rare form of cancer.
Dan Evans’ family had launched a £100,000 appeal to pay for the treatment after being told all viable options had been exhausted on the NHS.
Thanks to generous donations from across the community, they had already reached half their target.
However, the NHS has now agreed to cover the cost of the drug combination, Nivolumab and Brentuximab, which have proved success in trials but not yet available on the NHS.
Dan Evans, 18, a former student of Sir William Robertson Academy in Welbourn, was diagnosed with stage four Primary Mediastinal B Cell Lymphoma (PMBCL) in December 2022.
He had chemotherapy, radiotherapy, clinical trials and CAR T treatments, however, all failed and his devastated family was told no more viable treatment was available on the NHS.
His family, from Newark, set up a GoFundMe page with a £100,000 target after they discovered a combination of drugs that have proved successful in trial. They had raised nearly half of their target amount.
The family applied for the drug combination - which has now been approved by the NHS. Initially, only Nivolumab was approved and while the family waited for the second to be approved, Nottingham City Hospital offered Dan the first round for free to get the treatment started.
His treatment is set to start on Friday (January 26).
Dan’s father, Mark Evans said: “This has been an overwhelming time for us and very stressful, to say the least, as we were still unsure about the funding, whether it would be the NHS or us, via the self-funding page we set up.
“The GoFund Me page was specifically set up to buy the medications directly from the pharmaceutical companies, but now we are getting them gratuitous from the NHS and because of that we are informing our supporters and donors.
“As you were led to believe, like us, that Dan could only get these medications off label directly via self-funding and that the NHS could not do anymore for Dan as there were no more treatments available. Dan was sent home on December 20 2023, with the words from his consultant – go home and make memories.”
The family applied for the free-funded drugs through compassionate use – a treatment option that allows the use of an unauthorised medicine, under strict conditions, to patients who have a disease with no satisfactory authorised therapies and who cannot enter clinical trials.
The programmes are only put in place if the medicine is expected to help patients with life-threatening, long-lasting or seriously debilitating illnesses, which cannot be treated satisfactorily with any authorised medicine.
The online fundraising page has reached £49,765 which will now go towards supporting Dan and aiding his rehabilitation, holistic treatments and the various expenses that will come in the following three months.
Mr Evans added: “The funds will enable Dan and our family to make plans and move forward in lightening the financial burden that all families face in times of crisis and uncertainty.
“Dan has also expressed, that he would like to make donations to other GoFundMe fundraisers to make their life a little easier too. He’s aware of the detrimental effects and hardships on the families of children and teenagers battling cancer.”
The GoFundMe page will be closed on February 10, but people who wish to receive a refund of their donation can request this through the Help Centre on the page and they will be refunded within seven to 10 working days.
In a message to those who had donated, Mr Evans said: “Your generosity has overwhelmed us, especially at a time when you’ve got your own families dilemmas and life challenges, going through your own personal agendas and even the thought of Christmas and New Year can be a daunting time due to the cost of living for a lot of people.
“But in the same vein, it’s imperative to state, that we all depend on the NHS, especially when there’s a crisis and your life is literally in their hands.
“So we advise you, don’t take no for an answer, ask why, be tenacious, and do your research on your disease please, as we cannot be the only family this is happening to.”
By the end of December 2023, the family was told to take Dan home from the hospital and make memories, but the family refused to give up and found out about the combination of drugs that Dan will now start.
Mr Evans will continue to do updates on Dan’s condition on his personal Facebook page, as they don’t know how the 18-year-old will respond to the treatment and how his disease has advanced as the treatment is said to be over six weeks late.
“This is still a frightening, worrying time for us all but, we have to stay determined and remain strong, that ultimately this treatment will work and there will be hope. So please keep us in your prayers.
“Again, we must thank everyone who’s been involved in this fundraiser. Thank you so much for your kindness.”
The teenager who planned to attend Lincoln University to study geography in September was also a keen footballer who used to play for Newark Town Football Club as a goalkeeper.