Tag Archives: patients’

I’m reinventing mental health care by putting patients in charge

A feeling of powerlessness dominated my experience of mental health services. And this feeling was at its worst when I was sectioned. Sectioning replicated aspects of the traumatic experience that initially caused my suicidal crisis. I felt trapped, captive and utterly out of control. I couldn’t escape. .

The limited control I had over my interactions with mental health professionals also had a negative impact on me. In the psychiatrist-patient relationship, the power lies with the psychiatrist. And in the community, mental health teams decided how often I would be seen, what kind of care I would receive and when the care would end. Each of these things made me feel vulnerable.

In the summer of 2012 I started to speak of my plans to set up Suicide Crisis, a centre to provide an alternative type of mental health care. However, many people were sceptical because I was a recently discharged psychiatric patient.

The traumatic experience I went through was profoundly damaging and distressing. Remarkably, though, I think it changed me into the kind of person who was able to overcome the many barriers to setting up the crisis service. I developed a determination and a tenacity, which I didn’t have before.

It’s entirely possible that someone can be both a psychiatric patient and a competent professional. But sometimes I’ve felt that people find this difficult to understand. In the four-and-a-half years we’ve been providing services, we’ve never had a suicide of a client under our care.

Our work has received national attention in the last 18 months. We have given oral evidence about our crisis centre to the health select committee and presented to the National Suicide Prevention Strategy Advisory Group, which is run by the government adviser on suicide. We are approached regularly by NHS professionals and commissioners, who refer to our centre as an example of best practice.

Perhaps society can start to think of people with experience of mental illness as having valuable knowledge of what works and what doesn’t, which helps them succeed in this field. There are times when my lived experience is as important as my formal training. I have a deep understanding of what it is like to be in crisis.

My experience has even helped when assessing clients’ suicide risks, as in the case of Aidan*, a patient at the centre. Aidan had been very depressed, then one day he came to his appointment with us and seemed very happy, almost euphoric. I recognised that sense of exhilaration, which a person may feel when they have made a decision to end their life, because I experienced that same euphoria myself in 2012. I recall it as a very intense experience, where all my senses were heightened. I was sure I would soon be leaving this world and could appreciate every aspect of it in what I thought were my remaining hours.

Aidan’s risk was clearly high, and we provided intensive support to ensure his survival. I immediately contacted NHS services so they could assess whether he needed to be sectioned. He wasn’t sectioned, but the NHS crisis team kept in contact with him that night.

After that, he asked us to support him and we saw him on a daily basis. We kept in regular contact with his mental health team and he continued to see them every week.

My experience of feeling disempowered when using mental health services is the reason we ensure our clients have a greater degree of control. They decide how often they see us, what kind of care they receive and when they are ready to leave us. Our male clients say they find this particularly helpful. They can feel especially vulnerable when they seek help; putting them in control helps to counteract this.

Early on we took the decision to employ an advising psychiatrist and other advising clinicians. They have expertise that we don’t. They advise us on individual client cases, which can be complex. And they helped us create links with the local mental health service.

However, the ethos of the charity and the way our service is set up and run are all from a lived experience perspective.

We are in regular contact with local mental health services because we are often helping the same people. Clients often feel able to tell us things they may not feel able to disclose to their mental health team. In such cases, we are keen to share that information, with the client’s permission.

The power balance between patients and mental health professionals has effectively been reinvented in our organisation. “You’re my boss,” our advising psychiatrist tells me. However, I prefer to see it as a levelling of power, a greater equality. We all have huge respect for each other’s different strengths and abilities. We all learn from each other.

*Identifying details have been changed

Joy Hibbins is founder and chief executive of Suicide Crisis

  • In the UK the Samaritans can be contacted on 116 123. In the US, the National Suicide Prevention Lifeline is 1-800-273-8255. In Australia, the crisis support service Lifeline is 13 11 14. Other international suicide helplines can be found at www.befrienders.org.

If you would like to write a blogpost for Views from the NHS frontline, read our guidelines and get in touch by emailing sarah.johnson@theguardian.com.

Join the Healthcare Professionals Network to read more pieces like this. And follow us on Twitter (@GdnHealthcare) to keep up with the latest healthcare news and views.

If you’re looking for a healthcare job or need to recruit staff, visit Guardian Jobs.

I’m reinventing mental health care by putting patients in charge

A feeling of powerlessness dominated my experience of mental health services. And this feeling was at its worst when I was sectioned. Sectioning replicated aspects of the traumatic experience that initially caused my suicidal crisis. I felt trapped, captive and utterly out of control. I couldn’t escape. .

The limited control I had over my interactions with mental health professionals also had a negative impact on me. In the psychiatrist-patient relationship, the power lies with the psychiatrist. And in the community, mental health teams decided how often I would be seen, what kind of care I would receive and when the care would end. Each of these things made me feel vulnerable.

In the summer of 2012 I started to speak of my plans to set up Suicide Crisis, a centre to provide an alternative type of mental health care. However, many people were sceptical because I was a recently discharged psychiatric patient.

The traumatic experience I went through was profoundly damaging and distressing. Remarkably, though, I think it changed me into the kind of person who was able to overcome the many barriers to setting up the crisis service. I developed a determination and a tenacity, which I didn’t have before.

It’s entirely possible that someone can be both a psychiatric patient and a competent professional. But sometimes I’ve felt that people find this difficult to understand. In the four-and-a-half years we’ve been providing services, we’ve never had a suicide of a client under our care.

Our work has received national attention in the last 18 months. We have given oral evidence about our crisis centre to the health select committee and presented to the National Suicide Prevention Strategy Advisory Group, which is run by the government adviser on suicide. We are approached regularly by NHS professionals and commissioners, who refer to our centre as an example of best practice.

Perhaps society can start to think of people with experience of mental illness as having valuable knowledge of what works and what doesn’t, which helps them succeed in this field. There are times when my lived experience is as important as my formal training. I have a deep understanding of what it is like to be in crisis.

My experience has even helped when assessing clients’ suicide risks, as in the case of Aidan*, a patient at the centre. Aidan had been very depressed, then one day he came to his appointment with us and seemed very happy, almost euphoric. I recognised that sense of exhilaration, which a person may feel when they have made a decision to end their life, because I experienced that same euphoria myself in 2012. I recall it as a very intense experience, where all my senses were heightened. I was sure I would soon be leaving this world and could appreciate every aspect of it in what I thought were my remaining hours.

Aidan’s risk was clearly high, and we provided intensive support to ensure his survival. I immediately contacted NHS services so they could assess whether he needed to be sectioned. He wasn’t sectioned, but the NHS crisis team kept in contact with him that night.

After that, he asked us to support him and we saw him on a daily basis. We kept in regular contact with his mental health team and he continued to see them every week.

My experience of feeling disempowered when using mental health services is the reason we ensure our clients have a greater degree of control. They decide how often they see us, what kind of care they receive and when they are ready to leave us. Our male clients say they find this particularly helpful. They can feel especially vulnerable when they seek help; putting them in control helps to counteract this.

Early on we took the decision to employ an advising psychiatrist and other advising clinicians. They have expertise that we don’t. They advise us on individual client cases, which can be complex. And they helped us create links with the local mental health service.

However, the ethos of the charity and the way our service is set up and run are all from a lived experience perspective.

We are in regular contact with local mental health services because we are often helping the same people. Clients often feel able to tell us things they may not feel able to disclose to their mental health team. In such cases, we are keen to share that information, with the client’s permission.

The power balance between patients and mental health professionals has effectively been reinvented in our organisation. “You’re my boss,” our advising psychiatrist tells me. However, I prefer to see it as a levelling of power, a greater equality. We all have huge respect for each other’s different strengths and abilities. We all learn from each other.

*Identifying details have been changed

Joy Hibbins is founder and chief executive of Suicide Crisis

  • In the UK the Samaritans can be contacted on 116 123. In the US, the National Suicide Prevention Lifeline is 1-800-273-8255. In Australia, the crisis support service Lifeline is 13 11 14. Other international suicide helplines can be found at www.befrienders.org.

If you would like to write a blogpost for Views from the NHS frontline, read our guidelines and get in touch by emailing sarah.johnson@theguardian.com.

Join the Healthcare Professionals Network to read more pieces like this. And follow us on Twitter (@GdnHealthcare) to keep up with the latest healthcare news and views.

If you’re looking for a healthcare job or need to recruit staff, visit Guardian Jobs.

I’m reinventing mental health care by putting patients in charge

A feeling of powerlessness dominated my experience of mental health services. And this feeling was at its worst when I was sectioned. Sectioning replicated aspects of the traumatic experience that initially caused my suicidal crisis. I felt trapped, captive and utterly out of control. I couldn’t escape. .

The limited control I had over my interactions with mental health professionals also had a negative impact on me. In the psychiatrist-patient relationship, the power lies with the psychiatrist. And in the community, mental health teams decided how often I would be seen, what kind of care I would receive and when the care would end. Each of these things made me feel vulnerable.

In the summer of 2012 I started to speak of my plans to set up Suicide Crisis, a centre to provide an alternative type of mental health care. However, many people were sceptical because I was a recently discharged psychiatric patient.

The traumatic experience I went through was profoundly damaging and distressing. Remarkably, though, I think it changed me into the kind of person who was able to overcome the many barriers to setting up the crisis service. I developed a determination and a tenacity, which I didn’t have before.

It’s entirely possible that someone can be both a psychiatric patient and a competent professional. But sometimes I’ve felt that people find this difficult to understand. In the four-and-a-half years we’ve been providing services, we’ve never had a suicide of a client under our care.

Our work has received national attention in the last 18 months. We have given oral evidence about our crisis centre to the health select committee and presented to the National Suicide Prevention Strategy Advisory Group, which is run by the government adviser on suicide. We are approached regularly by NHS professionals and commissioners, who refer to our centre as an example of best practice.

Perhaps society can start to think of people with experience of mental illness as having valuable knowledge of what works and what doesn’t, which helps them succeed in this field. There are times when my lived experience is as important as my formal training. I have a deep understanding of what it is like to be in crisis.

My experience has even helped when assessing clients’ suicide risks, as in the case of Aidan*, a patient at the centre. Aidan had been very depressed, then one day he came to his appointment with us and seemed very happy, almost euphoric. I recognised that sense of exhilaration, which a person may feel when they have made a decision to end their life, because I experienced that same euphoria myself in 2012. I recall it as a very intense experience, where all my senses were heightened. I was sure I would soon be leaving this world and could appreciate every aspect of it in what I thought were my remaining hours.

Aidan’s risk was clearly high, and we provided intensive support to ensure his survival. I immediately contacted NHS services so they could assess whether he needed to be sectioned. He wasn’t sectioned, but the NHS crisis team kept in contact with him that night.

After that, he asked us to support him and we saw him on a daily basis. We kept in regular contact with his mental health team and he continued to see them every week.

My experience of feeling disempowered when using mental health services is the reason we ensure our clients have a greater degree of control. They decide how often they see us, what kind of care they receive and when they are ready to leave us. Our male clients say they find this particularly helpful. They can feel especially vulnerable when they seek help; putting them in control helps to counteract this.

Early on we took the decision to employ an advising psychiatrist and other advising clinicians. They have expertise that we don’t. They advise us on individual client cases, which can be complex. And they helped us create links with the local mental health service.

However, the ethos of the charity and the way our service is set up and run are all from a lived experience perspective.

We are in regular contact with local mental health services because we are often helping the same people. Clients often feel able to tell us things they may not feel able to disclose to their mental health team. In such cases, we are keen to share that information, with the client’s permission.

The power balance between patients and mental health professionals has effectively been reinvented in our organisation. “You’re my boss,” our advising psychiatrist tells me. However, I prefer to see it as a levelling of power, a greater equality. We all have huge respect for each other’s different strengths and abilities. We all learn from each other.

*Identifying details have been changed

Joy Hibbins is founder and chief executive of Suicide Crisis

  • In the UK the Samaritans can be contacted on 116 123. In the US, the National Suicide Prevention Lifeline is 1-800-273-8255. In Australia, the crisis support service Lifeline is 13 11 14. Other international suicide helplines can be found at www.befrienders.org.

If you would like to write a blogpost for Views from the NHS frontline, read our guidelines and get in touch by emailing sarah.johnson@theguardian.com.

Join the Healthcare Professionals Network to read more pieces like this. And follow us on Twitter (@GdnHealthcare) to keep up with the latest healthcare news and views.

If you’re looking for a healthcare job or need to recruit staff, visit Guardian Jobs.

Doctors told to think twice before signing patients off work or ordering x-rays

Doctors should rethink classifying patients as unfit for work and instead consider how work could benefit their recovery, an expert body has recommended.

The proposal is among the latest recommendations released on Monday by NPS MedicineWise, an Australian-based organisation led by medical experts and peak bodies to help doctors and patients avoid tests and medications that may be unnecessary or even cause harm.

The president of the Australasian Faculty of Occupational and Environmental Medicine, Associate Prof Peter Connaughton, said work-related injury and time off for illness cost the Australian economy an estimated $ 61.8bn each year directly and indirectly.

“The recommendation from our faculty provides an opportunity to emphasise the very important role good work has in contributing to the overall health and well-being of our country,” he said.

“On a personal level in my clinical experience, I see the emotional and physical impacts that not being able to work as a result of injury has on people’s lives, and people declared medically unfit for work experience isolation, loss of self-esteem, depression, poorer health and slower recovery times.”

Connaughton said his organisation had also recommended against unnecessary x-rays for those suffering lower back pain. A perspective piece published in the Medical Journal of Australia in 2016 described how lower back pain was the most common symptom seen in primary care, with the underlying injury often exacerbated by psychological and social stressors. Patients often had high expectations about what medicine could do to fix their pain, the authors wrote, and expected a surgical solution.

But Connaughton said there was no evidence that x-rays were effective for identifying the underlying cause of lower back pain unless there were very clear clinical indicators that something more serious might be going on.

“They expose workers to unnecessary radiation,” he said. “Backache is so common in our society and most are benign, self-limiting and do not warrant x-rays, which in fact can be harmful due to adverse health effects related to the radiation exposure, and incidental findings that might trigger anxiety and concern in patients and sometimes lead to more unnecessary further testing and investigation.”

The updated guidelines also caution that Australian children are having too many unnecessary diagnostic x-rays. The Royal Australasian College of Physicians [RACP] said x-rays should not be routinely used to diagnose children suffering bronchiolitis, asthma or nonspecific abdominal pain. The recommendation reflects clinical evidence that found chest x-rays significantly altered therapeutic management only in about one in 100 children with typical bronchiolitis. In more than 95% of cases, an abdominal x-ray offers no insight into the cause of non-specific abdominal pain in children.

“For any parents who might be concerned about the idea that ‘less can sometimes be more’, I would say to them we want to make sure we are only ordering a test when it is medically beneficial for your child,” said Dr Sarah Dalton, the president of the RACP’s paediatrics and child health division.

“In the case of abdominal x-rays, we know they actually have more radiation than chest x-rays and in some cases have been shown to be unnecessary for diagnostic purposes. This is why we’re calling attention to their use in children, and urging doctors to think twice before ordering their next one.”

Meanwhile, a new recommendation from the Internal Medicine Society of Australia and New Zealand targets Australians over 65 who are regularly taking five or more medications, including over-the-counter purchases such as vitamins.

The president of the society, Dr Robert Pickles, said those patients should ask their doctor whether their medication regime should be downgraded.

“We often forget our bodies change with age and out body’s responses tend to change with age,” Pickles said.

“Anti-diabetic drugs can become more potent as people age and as kidney function deteriorates and muscle bulk decreases, leading to low blood sugar, falling over and harm from falls.” Patients sometimes kept taking drugs that were needed only in the short-term, he added.

The medicines older Australians should consider avoiding include: benzodiazepines, anti-psychotics, hypoglycaemic agents, antithrombotic agents, anti-hypertensives and anti-anginal medicine, he said.

Doctors told to think twice before signing patients off work or ordering x-rays

Doctors should rethink classifying patients as unfit for work and instead consider how work could benefit their recovery, an expert body has recommended.

The proposal is among the latest recommendations released on Monday by NPS MedicineWise, an Australian-based organisation led by medical experts and peak bodies to help doctors and patients avoid tests and medications that may be unnecessary or even cause harm.

The president of the Australasian Faculty of Occupational and Environmental Medicine, Associate Prof Peter Connaughton, said work-related injury and time off for illness cost the Australian economy an estimated $ 61.8bn each year directly and indirectly.

“The recommendation from our faculty provides an opportunity to emphasise the very important role good work has in contributing to the overall health and well-being of our country,” he said.

“On a personal level in my clinical experience, I see the emotional and physical impacts that not being able to work as a result of injury has on people’s lives, and people declared medically unfit for work experience isolation, loss of self-esteem, depression, poorer health and slower recovery times.”

Connaughton said his organisation had also recommended against unnecessary x-rays for those suffering lower back pain. A perspective piece published in the Medical Journal of Australia in 2016 described how lower back pain was the most common symptom seen in primary care, with the underlying injury often exacerbated by psychological and social stressors. Patients often had high expectations about what medicine could do to fix their pain, the authors wrote, and expected a surgical solution.

But Connaughton said there was no evidence that x-rays were effective for identifying the underlying cause of lower back pain unless there were very clear clinical indicators that something more serious might be going on.

“They expose workers to unnecessary radiation,” he said. “Backache is so common in our society and most are benign, self-limiting and do not warrant x-rays, which in fact can be harmful due to adverse health effects related to the radiation exposure, and incidental findings that might trigger anxiety and concern in patients and sometimes lead to more unnecessary further testing and investigation.”

The updated guidelines also caution that Australian children are having too many unnecessary diagnostic x-rays. The Royal Australasian College of Physicians [RACP] said x-rays should not be routinely used to diagnose children suffering bronchiolitis, asthma or nonspecific abdominal pain. The recommendation reflects clinical evidence that found chest x-rays significantly altered therapeutic management only in about one in 100 children with typical bronchiolitis. In more than 95% of cases, an abdominal x-ray offers no insight into the cause of non-specific abdominal pain in children.

“For any parents who might be concerned about the idea that ‘less can sometimes be more’, I would say to them we want to make sure we are only ordering a test when it is medically beneficial for your child,” said Dr Sarah Dalton, the president of the RACP’s paediatrics and child health division.

“In the case of abdominal x-rays, we know they actually have more radiation than chest x-rays and in some cases have been shown to be unnecessary for diagnostic purposes. This is why we’re calling attention to their use in children, and urging doctors to think twice before ordering their next one.”

Meanwhile, a new recommendation from the Internal Medicine Society of Australia and New Zealand targets Australians over 65 who are regularly taking five or more medications, including over-the-counter purchases such as vitamins.

The president of the society, Dr Robert Pickles, said those patients should ask their doctor whether their medication regime should be downgraded.

“We often forget our bodies change with age and out body’s responses tend to change with age,” Pickles said.

“Anti-diabetic drugs can become more potent as people age and as kidney function deteriorates and muscle bulk decreases, leading to low blood sugar, falling over and harm from falls.” Patients sometimes kept taking drugs that were needed only in the short-term, he added.

The medicines older Australians should consider avoiding include: benzodiazepines, anti-psychotics, hypoglycaemic agents, antithrombotic agents, anti-hypertensives and anti-anginal medicine, he said.

NHS patients would prefer an op over an app, Mr Hunt | Brief letters

The Women’s Social and Political Union may have started life in Manchester (Museum secures rare relic from the fight for women’s right to vote, 7 September) but the suffragette movement moved to London because, as Christabel Pankhurst said, politicians took more notice of “demonstrations of the feminine bourgeoisie than of the female proletariat”. Its committee rooms, once thronged with Lancashire mill hands, were now packed with ladies in silks and satins, not all of them as sensitive to the plight of their less affluent sisterhood as the champion of rational dress, Lady Harberton.
Don Chapman
Author, Wearing the Trousers: Fashion, Freedom and the Rise of the Modern Woman

Good on Father Alan Everett (‘Lights … signalling faint hope, until floor by floor the darkenss snuffed them out’, 11 September) for placing poetry at the heart of a devastated community and for also providing real practical help and assistance when the Grenfell Tower victims needed it the most. This is indeed a man who cares and has ensured that 14 June 2017 will stay in our minds forever.
Judith A Daniels
Great Yarmouth, Norfolk

Readers heading to the Eclipse nightclub in Brentwood in the hope of an encounter with unlikely country music performer Megan McKenna (Pass notes, 11 September) will be disappointed. The club (formerly the Castle pub) has recently been reduced to a heap of rubble by developers.
David Jobbins
Kelvedon Hatch, Essex

David Redshaw complains that modern evangelical songs sound like Eurovision entries (Letters, 9 September). Actually, if our Eurovision entries were half as tuneful as some of the songs sung at my church, we might actually win it for a change.
Jeremy Muldowney
York

I do not have a smartphone and I would be more impressed by the availability of an op than an app (Hunt promises ‘patient power’ with NHS app, 11 September).
Sue Wallace
Thame, Oxfordshire

Join the debate – email guardian.letters@theguardian.com

Read more Guardian letters – click here to visit gu.com/letters

US approves first cancer drug to use patient’s own cells – with $475,000 price tag

US regulators approved the first cancer drug that uses a patient’s own cells to fight cancer. But the drug is priced at $ 475,000.

Oncologists described the drug, made by Novartis and marketed as Kymriah, as revolutionary, but critics worried the first-of-its-kind cancer treatment could usher in a new class of ultra-expensive medications.

Kymriah will be a one-time, intravenous treatment patients receive after scientists at Novartis engineer a patient’s own immune cells (T-cells) to fight cancer. The drug will treat acute lymphocytic leukemia, the most common type of childhood cancer in the US.

Currently, standard treatments push about 85% of children into remissions of five years or longer, according to the American Cancer Society. Kymriah would treat patients who don’t respond to standard treatment, probably only a few hundred children and young adults per year.

“This is a brand new way of treating cancer,” said Dr Stephan Grupp of Children’s Hospital of Philadelphia, who led the Novartis study. Grupp treated the first patient using the new immunotherapy procedure: a girl who was near death but is now cancer-free five years and counting. Grupp described the drug as “enormously exciting”.

Though the price may be shocking to many, analysts will probably view the $ 475,000 price tag as conservative. A British study suggested the “upper bound” for a drug like Kymriah could be $ 649,000.

Critics countered that the Novartis treatment, no matter how revolutionary, only proved drug pricing in America was “completely broken”.

“While Novartis’ decision to set a price at $ 475,000 per treatment may be seen by some as restraint, we believe it is excessive,” said David Mitchell, the president of Patients for Affordable Drugs. Mitchell said Novartis should not “get credit” for bringing an expensive drug to market “and claiming they could have charged people a lot more”.

Mitchell’s group met with Novartis the day before the drug’s approval – and price – was announced.

“Instead of a discussion about how to arrive at a fair price for its new CAR-T drug, Novartis spent most of the meeting explaining why it needs to charge an astronomical price,” Mitchell said.

In a conference call Wednesday, Bruno Strigini, Novartis’s head of oncology, said the $ 475,000 price was an attempt to balance patient access to the drug with ensuring a return on the company’s investment, Stat News reported.

The company’s CEO, Joseph Jimenez, said in a statement: “Five years ago, we began collaborating with the University of Pennsylvania and invested in further developing and bringing what we believed would be a paradigm-changing immunocellular therapy to cancer patients in dire need. With the approval of Kymriah, we are once again delivering on our commitment to change the course of cancer care.”

The drug company also said in the statement that it was collaborating with Medicare on a plan in which the government would only pay for the treatments if patients responded to them by the end of the first month.

Patients for Affordable Drugs calculated that before Novartis collaborated with University of Pennsylvania, American taxpayers invested roughly $ 200m into “foundational” research on CAR-T cell therapies, as the new immunotherapy treatment is known.

The FDA approved Novartis’ drug following a study of 63 patients that found 83% who took the medication went into remission. However, it is unclear how long the benefits of the treatment may last; some patients relapsed months later.

Further, patients could also experience extreme and even life-threatening side effects. One side effect, cytokine release syndrome, can cause high fevers, diarrhea and vomiting. Another, neurological toxicities, can cause delirium, loss of balance and difficulty speaking and understanding.

Additionally, patients will almost certainly have to travel to receive the treatment. Novartis individually edits patients’ cells. Anyone seeking treatment will need to travel to one of 32 sites around the country for their cells to be collected and mailed to Novartis in New Jersey, Stat News reported.

The Associated Press contributed to this report

US approves first cancer drug to use patient’s own cells – with $475,000 price tag

US regulators approved the first cancer drug that uses a patient’s own cells to fight cancer. But the drug is priced at $ 475,000.

Oncologists described the drug, made by Novartis and marketed as Kymriah, as revolutionary, but critics worried the first-of-its-kind cancer treatment could usher in a new class of ultra-expensive medications.

Kymriah will be a one-time, intravenous treatment patients receive after scientists at Novartis engineer a patient’s own immune cells (T-cells) to fight cancer. The drug will treat acute lymphocytic leukemia, the most common type of childhood cancer in the US.

Currently, standard treatments push about 85% of children into remissions of five years or longer, according to the American Cancer Society. Kymriah would treat patients who don’t respond to standard treatment, probably only a few hundred children and young adults per year.

“This is a brand new way of treating cancer,” said Dr Stephan Grupp of Children’s Hospital of Philadelphia, who led the Novartis study. Grupp treated the first patient using the new immunotherapy procedure: a girl who was near death but is now cancer-free five years and counting. Grupp described the drug as “enormously exciting”.

Though the price may be shocking to many, analysts will probably view the $ 475,000 price tag as conservative. A British study suggested the “upper bound” for a drug like Kymriah could be $ 649,000.

Critics countered that the Novartis treatment, no matter how revolutionary, only proved drug pricing in America was “completely broken”.

“While Novartis’ decision to set a price at $ 475,000 per treatment may be seen by some as restraint, we believe it is excessive,” said David Mitchell, the president of Patients for Affordable Drugs. Mitchell said Novartis should not “get credit” for bringing an expensive drug to market “and claiming they could have charged people a lot more”.

Mitchell’s group met with Novartis the day before the drug’s approval – and price – was announced.

“Instead of a discussion about how to arrive at a fair price for its new CAR-T drug, Novartis spent most of the meeting explaining why it needs to charge an astronomical price,” Mitchell said.

In a conference call Wednesday, Bruno Strigini, Novartis’s head of oncology, said the $ 475,000 price was an attempt to balance patient access to the drug with ensuring a return on the company’s investment, Stat News reported.

The company’s CEO, Joseph Jimenez, said in a statement: “Five years ago, we began collaborating with the University of Pennsylvania and invested in further developing and bringing what we believed would be a paradigm-changing immunocellular therapy to cancer patients in dire need. With the approval of Kymriah, we are once again delivering on our commitment to change the course of cancer care.”

The drug company also said in the statement that it was collaborating with Medicare on a plan in which the government would only pay for the treatments if patients responded to them by the end of the first month.

Patients for Affordable Drugs calculated that before Novartis collaborated with University of Pennsylvania, American taxpayers invested roughly $ 200m into “foundational” research on CAR-T cell therapies, as the new immunotherapy treatment is known.

The FDA approved Novartis’ drug following a study of 63 patients that found 83% who took the medication went into remission. However, it is unclear how long the benefits of the treatment may last; some patients relapsed months later.

Further, patients could also experience extreme and even life-threatening side effects. One side effect, cytokine release syndrome, can cause high fevers, diarrhea and vomiting. Another, neurological toxicities, can cause delirium, loss of balance and difficulty speaking and understanding.

Additionally, patients will almost certainly have to travel to receive the treatment. Novartis individually edits patients’ cells. Anyone seeking treatment will need to travel to one of 32 sites around the country for their cells to be collected and mailed to Novartis in New Jersey, Stat News reported.

The Associated Press contributed to this report

US approves first cancer drug to use patient’s own cells – with $475,000 price tag

US regulators approved the first cancer drug that uses a patient’s own cells to fight cancer. But the drug is priced at $ 475,000.

Oncologists described the drug, made by Novartis and marketed as Kymriah, as revolutionary, but critics worried the first-of-its-kind cancer treatment could usher in a new class of ultra-expensive medications.

Kymriah will be a one-time, intravenous treatment patients receive after scientists at Novartis engineer a patient’s own immune cells (T-cells) to fight cancer. The drug will treat acute lymphocytic leukemia, the most common type of childhood cancer in the US.

Currently, standard treatments push about 85% of children into remissions of five years or longer, according to the American Cancer Society. Kymriah would treat patients who don’t respond to standard treatment, probably only a few hundred children and young adults per year.

“This is a brand new way of treating cancer,” said Dr Stephan Grupp of Children’s Hospital of Philadelphia, who led the Novartis study. Grupp treated the first patient using the new immunotherapy procedure: a girl who was near death but is now cancer-free five years and counting. Grupp described the drug as “enormously exciting”.

Though the price may be shocking to many, analysts will probably view the $ 475,000 price tag as conservative. A British study suggested the “upper bound” for a drug like Kymriah could be $ 649,000.

Critics countered that the Novartis treatment, no matter how revolutionary, only proved drug pricing in America was “completely broken”.

“While Novartis’ decision to set a price at $ 475,000 per treatment may be seen by some as restraint, we believe it is excessive,” said David Mitchell, the president of Patients for Affordable Drugs. Mitchell said Novartis should not “get credit” for bringing an expensive drug to market “and claiming they could have charged people a lot more”.

Mitchell’s group met with Novartis the day before the drug’s approval – and price – was announced.

“Instead of a discussion about how to arrive at a fair price for its new CAR-T drug, Novartis spent most of the meeting explaining why it needs to charge an astronomical price,” Mitchell said.

In a conference call Wednesday, Bruno Strigini, Novartis’s head of oncology, said the $ 475,000 price was an attempt to balance patient access to the drug with ensuring a return on the company’s investment, Stat News reported.

The company’s CEO, Joseph Jimenez, said in a statement: “Five years ago, we began collaborating with the University of Pennsylvania and invested in further developing and bringing what we believed would be a paradigm-changing immunocellular therapy to cancer patients in dire need. With the approval of Kymriah, we are once again delivering on our commitment to change the course of cancer care.”

The drug company also said in the statement that it was collaborating with Medicare on a plan in which the government would only pay for the treatments if patients responded to them by the end of the first month.

Patients for Affordable Drugs calculated that before Novartis collaborated with University of Pennsylvania, American taxpayers invested roughly $ 200m into “foundational” research on CAR-T cell therapies, as the new immunotherapy treatment is known.

The FDA approved Novartis’ drug following a study of 63 patients that found 83% who took the medication went into remission. However, it is unclear how long the benefits of the treatment may last; some patients relapsed months later.

Further, patients could also experience extreme and even life-threatening side effects. One side effect, cytokine release syndrome, can cause high fevers, diarrhea and vomiting. Another, neurological toxicities, can cause delirium, loss of balance and difficulty speaking and understanding.

Additionally, patients will almost certainly have to travel to receive the treatment. Novartis individually edits patients’ cells. Anyone seeking treatment will need to travel to one of 32 sites around the country for their cells to be collected and mailed to Novartis in New Jersey, Stat News reported.

The Associated Press contributed to this report

US approves first cancer drug to use patient’s own cells – with $475,000 price tag

US regulators approved the first cancer drug that uses a patient’s own cells to fight cancer. But the drug is priced at $ 475,000.

Oncologists described the drug, made by Novartis and marketed as Kymriah, as revolutionary, but critics worried the first-of-its-kind cancer treatment could usher in a new class of ultra-expensive medications.

Kymriah will be a one-time, intravenous treatment patients receive after scientists at Novartis engineer a patient’s own immune cells (T-cells) to fight cancer. The drug will treat acute lymphocytic leukemia, the most common type of childhood cancer in the US.

Currently, standard treatments push about 85% of children into remissions of five years or longer, according to the American Cancer Society. Kymriah would treat patients who don’t respond to standard treatment, probably only a few hundred children and young adults per year.

“This is a brand new way of treating cancer,” said Dr Stephan Grupp of Children’s Hospital of Philadelphia, who led the Novartis study. Grupp treated the first patient using the new immunotherapy procedure: a girl who was near death but is now cancer-free five years and counting. Grupp described the drug as “enormously exciting”.

Though the price may be shocking to many, analysts will probably view the $ 475,000 price tag as conservative. A British study suggested the “upper bound” for a drug like Kymriah could be $ 649,000.

Critics countered that the Novartis treatment, no matter how revolutionary, only proved drug pricing in America was “completely broken”.

“While Novartis’ decision to set a price at $ 475,000 per treatment may be seen by some as restraint, we believe it is excessive,” said David Mitchell, the president of Patients for Affordable Drugs. Mitchell said Novartis should not “get credit” for bringing an expensive drug to market “and claiming they could have charged people a lot more”.

Mitchell’s group met with Novartis the day before the drug’s approval – and price – was announced.

“Instead of a discussion about how to arrive at a fair price for its new CAR-T drug, Novartis spent most of the meeting explaining why it needs to charge an astronomical price,” Mitchell said.

In a conference call Wednesday, Bruno Strigini, Novartis’s head of oncology, said the $ 475,000 price was an attempt to balance patient access to the drug with ensuring a return on the company’s investment, Stat News reported.

The company’s CEO, Joseph Jimenez, said in a statement: “Five years ago, we began collaborating with the University of Pennsylvania and invested in further developing and bringing what we believed would be a paradigm-changing immunocellular therapy to cancer patients in dire need. With the approval of Kymriah, we are once again delivering on our commitment to change the course of cancer care.”

The drug company also said in the statement that it was collaborating with Medicare on a plan in which the government would only pay for the treatments if patients responded to them by the end of the first month.

Patients for Affordable Drugs calculated that before Novartis collaborated with University of Pennsylvania, American taxpayers invested roughly $ 200m into “foundational” research on CAR-T cell therapies, as the new immunotherapy treatment is known.

The FDA approved Novartis’ drug following a study of 63 patients that found 83% who took the medication went into remission. However, it is unclear how long the benefits of the treatment may last; some patients relapsed months later.

Further, patients could also experience extreme and even life-threatening side effects. One side effect, cytokine release syndrome, can cause high fevers, diarrhea and vomiting. Another, neurological toxicities, can cause delirium, loss of balance and difficulty speaking and understanding.

Additionally, patients will almost certainly have to travel to receive the treatment. Novartis individually edits patients’ cells. Anyone seeking treatment will need to travel to one of 32 sites around the country for their cells to be collected and mailed to Novartis in New Jersey, Stat News reported.

The Associated Press contributed to this report