Tuesday, April 28, 2009

British grandmother is refused cancer drug

The NHS thinks it has already spent enough money on her

Grandmother Beryl Jarvis, who is battling cancer for the fourth time, has been refused a drug that could save her life – because the NHS says it has already spent enough money on her treatment.

Mrs Jarvis has been told a drug cleared for use last November could help reduce a tumour in her lungs. But the NHS says it is not cost-effective to prescribe the drug. Mrs Jarvis, 66, said: "They are saying that for the sake of £10,000 a year my life is not worth saving. How could they put that price on my life?" Her daughter has described the decision as handing her mother a "death sentence".

Mrs Jarvis first contracted ovarian cancer in the early 1980s. She overcame the disease after she underwent a course of chemotherapy. But in January 2004 she was diagnosed with lung cancer. The former cleaner had a round of chemotherapy, followed by radiotherapy, and was free of the cancer for three years.

Early in 2007 the disease returned and Mrs Jarvis, of Home Close, Southmead, was given another round of chemotherapy. Last spring, her tumour grew again and she underwent more chemotherapy. In November the cancer increased in size and her consultant at Bristol Oncology Centre recommended a drug called Tarceva. He believed it could help reduce the size of the tumour. He applied to NHS Bristol – which is in charge of health spending in the city – to see if they would treat her as an exceptional funding case, but was turned down.

Mrs Jarvis said: "When I heard that Tarceva had been approved I thought I might be entitled to it." But she was turned down because the National Institute of Health and Clinical Excellence (NICE) had not approved it for cases like hers. Other treatments were tried by Mrs Jarvis but she suffered side-effects. She said: "I did not know then that if you had already had two chemotherapy treatments you could not have it. "It seems as though if you have had cancer for so long they don't want to pay money."

Despite this, Mrs Jarvis is determined to continue battling the disease. She desperately wants to attend the wedding of her grandson Lee Brewer in July. It was this determination to see him grow up and get married which got her through her first battle with cancer in the 1980s. Her husband, Nigel, 59, said: "Beryl has been fighting for five and a half years now because she won't give up. The fight is there, why should she be denied this?"

Mrs Jarvis' daughter, Nikki Brewer, said: "When they sent the letter saying they would not pay for the treatment it was a death sentence. They call it exceptional funding, but we are also facing exceptional circumstances."

The drug hit the headlines last year with the case of Carol Rummels, from Stoke Lodge, who was eventually given Tarceva just before the change of guidelines.

Mrs Jarvis, and her husband have been in contact with Mrs Rummels and have also written to their MP, Doug Naysmith. He has passed their concerns on to Bristol South MP Dawn Primarolo in her capacity as a health minister.

A spokesman for NICE said: "The guidance does not recommend erlotinib (Tarceva) for the second-line treatment of locally advanced or metastatic non-small-cell lung cancer in patients who are intolerant of docetaxel, or for third-line treatment after docetaxel therapy because it is not a cost-effective use of NHS resources when used in this way."

NHS Bristol spokeswoman, Julie Hendry, said: "While NHS Bristol has sympathy for Mrs Jarvis, NICE guidelines state that Erlotinib (Tarceva) therapy is not recommended for patients undergoing third- line treatment after docetaxel therapy and our local network of experts have endorsed this guidance. "Every application NHS Bristol receives for this treatment is considered using this guidance in order to ensure fair and equitable treatment for all patients."


Doctors attack embryo screening 'postcode lottery'

The NHS is contributing to needless abortions and the avoidable birth of children with inherited diseases because of a postcode lottery in embryo screening, medical experts said today. Couples who know they are at risk of passing on serious genetic diseases to their children are often refused funding for IVF tests that can detect affected embryos, according to doctors and nurses from Guy’s Hospital in London. This has led to cases in which couples have terminated pregnancies following the results of prenatal tests and incidents where children have been born with a genetic disease that could have been picked up with embryo screening.

When prospective parents know they are at risk of having children with a serious heritable disease, they can use an embryo screening test known as pre-implantation genetic diagnosis (PGD) to ensure they have a healthy baby. Though such couples are generally fertile, they conceive by IVF and a single cell is removed from each embryo for genetic analysis. Only embryos that do not carry the faulty gene carried by the family are then chosen for transfer to the womb.

The service, which costs about £7,000, is available for hundreds of genetic conditions, including cystic fibrosis, Huntington’s disease and muscular dystrophy, and several hundred PGD babies have been born in the UK. The only alternatives are prenatal testing, in which a foetus is tested several months into pregnancy, offering the parents the opportunity to have an abortion if it is affected, or taking no tests at all. All primary care trusts fund prenatal tests during pregnancy when there is a risk but many will not pay for PGD, even though this can prevent abortions.

Alison Lashwood, consultant nurse in genetics and PGD at Guy’s, said: “There are couples we have seen who have not been given funding, who have gone on to have affected children. Others have had to go down the prenatal testing route and some have had terminations.”

Speaking at the launch of Guy’s Hospital’s new Assisted Conception Unit and PGD centre, which opens tomorrow, she described one couple who had been refused PGD on the NHS, who had gone on to have a stillbirth and a baby with a severe inherited disease.

Some PCTs, Ms Lashwood said, apply the same eligibility criteria as they do to IVF for infertility even though it is not a fertility treatment. This means that couples can be refused on grounds of age or because they already have children. The latter is particularly unfair on couples who discover they need the procedure because they have already had a child with a genetic disease. “They cannot get the idea that PGD is an early approach to prenatal diagnosis, not a type of fertility treatment,” Ms Lashwood said. She urged trusts to set up common rules, as are already operated by a consortium of PCTs in south east England.

Yacoub Khalaf, head of the Guy’s unit, said: “More trusts than not understand the need for PGD and that it is not to be mixed up with fertility treatment, but some trusts say they offer prenatal diagnosis, so why don’t you have that? It denies patients a choice.”

Professor Peter Braude, of King’s College, London, said: “Some PCTs regard PGD as a bolt-on to IVF, but it should not be seen that way. Most patients who have PGD are not infertile.”


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