Tag Archives: priorities

Extreme oncology in Romania

Geta Roman is a Bucharest-based freelance journalist writing about history and medicine. For more than 10 years she was a health editor for Romanian newspapers Cotidianul and Evenimentul Zilei

Geta Roman is a Bucharest-based freelance journalist writing about history and medicine. For more than 10 years she was a health editor for Romanian newspapers Cotidianul and Evenimentul Zilei

Being an oncologist in Romania is an extreme job. Being a patient with cancer in Romania is an extreme experience.

We have 250 oncologists to care for at least 500,000 people with cancer (the figures are uncertain because the National Cancer Registry is not up and running). Our hospitals are crowded, we lack medication, many patients waiting for chemotherapy or radiotherapy, and doctors and nurses are overwhelmed. At the same time, oncology is a field rife with corruption, with the patient caught in the middle.

The National Health Insurance and Ministry of Health are trying to find solutions: more money has been offered to doctors who work in emergency departments, and the private sector is now involved in providing radiotherapy and chemotherapy treatments, paid for by National Health Insurance. But it’s nowhere near enough to resolve the crisis in our cancer services.

The young doctors who are preparing to take the place of the older generation when they retire, and the older doctors who are forced to care for more patients than they can handle, propose the same solution for resolving this crisis: more money for doctors’ salaries, to keep them from leaving the country.

An experienced oncologist earns around €1,000 per month working in the public health system, while the younger ones earn only around €300-400 depending on their experience.

Flori Vladutescu is a Resident doctor in her second year in one of the biggest hospital in the country. She chose to become one because of the impact of cancer on her own life: her mother died from breast cancer when Flori was only four years old, and in the past years she has given close support to her sister, who was diagnosed with stage III breast cancer. She would like to know whether they have the breast cancer gene mutation, but the tests are too expensive, and are not covered by the public system.

Right now, Flori has decided to stay in Romania to care for people with cancer. She’s been promised a job in Giurgiu, 60 km from her hometown, Bucharest. “Cancer patient are special, more sensitive, you have to work with them to solve the physical problems, but you need a special attitude. I learnt that from my oncology teachers, who are also different – nicer, more human…” says Flori.

Initially she had intended to leave the country after finishing her residency. But she changed her mind, and is set on taking the job in Gurgui. “I’ve already gone there. I met the doctor who I will work with, and I saw all those patients who need help. I felt for them.” Her biggest challenge, she says, will be how to manage financially. “Half my salary will go on petrol, if I choose to commute from Bucharest every day” She think she may look for somewhere more local to stay.

“Half my salary will go on petrol”

The doctor in charge of the oncology outpatient clinic in Giurgiu, Florin Onisim, says that poor organisation ends up wasting doctors’ time, making an impossible job even more impossible. A new system of electronic registration was implemented over the past year, but no additional staff were recruited to input all the data. “It is extremely bureaucratic,” says Onisim. Before this system, I was able to see 70 people daily, now only around 30–35,” he says.

People living in and around Giurgiu are relatively lucky in one respect – they live not far from Bucharest, which has the biggest concentration of public and private cancer services in the country, so most of them have the option to travel to find an expert.

The situation is worse in other parts of the country. In Vaslui, one of the poorest cities, along the eastern border of Romania, the county hospital – which caters for a population of 375,000 – has no oncologist at all. In Resita, a city with 65,000 people, in the west part of Romania, the only oncologist in the area is responsible for the more than 8,000 patients recorded in the cancer registry.

Every time the local authorities try to hire oncologists, they face the same obstacle: no doctors are interested in going there, because of the low salaries offered by public hospitals. They prefer to join the exodus of more than 10,000 doctors who have gone to work in other European countries since 2007, when Romania became an EU member. Or they stay and work in the private sector in Romania.

The solution to both is better payments for doctors.

Cancer patients receiving chemotherapy at a major Bucharest hospital

Cancer patients receiving chemotherapy at a major Bucharest hospital

Uganda says “we can” on World Cancer Day

Guest blogger – Esther Nakkazi, freelance science journalist

Guest blogger – Esther Nakkazi, freelance science journalist

“We can – I can – get involved in cancer prevention and control”

This is the theme for World Cancer Day being promoted by Ugandan health ministry.

And this year it seems that the government is not just talking the talk, it is walking the walk with plans to provide the legal basis and funding to support a comprehensive approach to cancer control in the country.

When the 10th Parliament convenes after the May elections, the Cancer Bill will be high up on the agenda.

Its primary objective will be to establish the Uganda Cancer Institute as an autonomous agency of Government mandated to undertake and coordinate the prevention and treatment of cancer and cancer-related diseases and conduct research.

With only 25 oncologists in the whole country, Uganda currently struggles to care for the almost 30,000 people who are diagnosed with cancer every year. Speaking at a press conference at the Ministry of Health ahead of World Cancer Day, Jackson Orem, Director of the Uganda Cancer Institute, spoke of his hope of increasing survival from the current rate of 20% to 50%, through improved prevention, earlier detection and care. And he sounded confident the proposed measures would be debated as planned. “The Cancer Bill is already before the committee of health. It will be their priority in the next parliament,”he said.

With 60% of new cancer cases caused by infections, immunisation programmes will be key to cutting new cases. Cervical cancer, associated with infection with the HPV virus, is the single biggest cause of cancer death among women, with Kaposi sarcoma, associated with HIV infection, and liver cancer, associated with hepatitis also major killers.

Anthony Mbonye, the commissioner for community health services at Uganda’s Health Ministry, spoke of the government’s commitment to vaccination programmes. “Human Papilloma Virus (HPV) vaccination against cancer of the cervix is now available across the country and girls aged 10 years can access it in all our health facilities,” he said, adding that the Hepatitis B vaccine is now part of the routine childhood immunisations, and vaccination is also available for adults in high-burden districts, and will soon be available across the country.

As an autonomous agency, the Uganda Cancer Institute will be a corporate body governed by a Board of Directors. The Bill spells out that the Institute will undertake and coordinate the prevention and treatment of cancers in Uganda, including providing comprehensive medical care services to patients affected with cancer and other cancer-related diseases, and coordinating cancer-related activities both within and outside Uganda.

The Bill also provides for the Institute to conduct on-the-job training in oncology and related fields for its staff as well as to provide public education and training on cancer.

Importantly it includes provisions for funding the Institute and its work.

Orem hopes this will be an important step to establishing a truly national cancer service. “We want every cancer patient to be diagnosed and followed up. We need to get their contacts so that they are always within our systems,” he said.

But his aspirations go beyond Uganda’s own borders. “The UCI,” he said, “will be the centre for training oncologists in East Africa in an effort to increase human resource in the region.

Grand opening of the new Ugandan Cancer Institute buildings May 2015

Grand opening of the new Ugandan Cancer Institute buildings May 2015

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It’s not a war on cancer that we need, it’s a revolution

anna portrait  pic

Anna Wagstaff

The influential Economist magazine describes its mission as “to take part in a severe contest between intelligence, which presses forward, and an unworthy, timid ignorance obstructing our progress”.

So when it turned its attention to organising a conference on the “War on Cancer”, I registered for a press pass. I was familiar with most of the speakers, and I wasn’t expecting to hear anything I didn’t already know. But I thought The Economist might attract an interesting and diverse audience, and I was interested to hear how the discussion would go.

It did turn out to be interesting – but not in a good way. While the agenda was wide-ranging and the chair asked sensible questions to dig deeper into the issues, the audience was largely inanimate – except when the topic touched on new medical therapies.

When it came to the intricacies of the adaptive pathways approach to approving new drugs, the challenge of speeding progress through health technology assessment, the obstacles to trialling combinations of drugs in patients who stood to benefit most, the questions came thick and fast.

When the subject was how to provide care for escalating numbers of survivors, fix unacceptable variations in care quality, provide better access to different types of radiotherapy, or address missed prevention opportunities – silence.

Thinking about it, I should have expected this.

Yes, it was a well-balanced agenda, but the so-called war on cancer in reality lacks any such balance, and it is not surprising that this was reflected in the composition and interests of the audience.

Researching and developing new medical treatments remains the biggest hope for increasing cancer survival, and this effort deserves all the support it can get. But the extent to which this agenda dominates the ‘war’ strategy is out of all proportion to the contribution it is making to reducing death and suffering from cancer.

This point was made in different ways by many of the speakers.  Chris Wild, head of IARC, and Cary Adams, head of the UICC, talked about the central role of prevention, saying “We cannot treat our way out of cancer,” and “Only 3% of the cancer research budget goes towards prevention, and it’s wrong.”

Cai Grau, leader of ESTRO’s HERO project, talked about the role of radiotherapy, which accounts for around 40% of cancer cures, and has been shown to be a cost-effective treatment. He pointed out the benefit to patient outcomes that could be achieved by putting more effort into addressing the severe undercapacity in many European countries.

Francesco de Lorenzo, President of the European Cancer Patient Coalition, talked about the priority patients give to ending the treatment lottery. They want more attention paid to ensuring that wherever they are treated, they can trust their medical team to deliver high quality care.

Jane Maher, Macmillan’s Chief Medical Officer, spoke convincingly about what can and must to be done to ensure that growing numbers of cancer survivors get the support and care they need not just to survive, but to get their lives back on track and lead a fulfilling life.

What they were all saying was that we do in fact know how to make faster progress against cancer, we’re just not doing it. Sadly, this audience didn’t seem to see it as their problem. And this got me wondering about the war against cancer. Is the problem really one of “intelligence versus ignorance” as The Economist frames it, or is it that the people in the driving seat are so focused on their own agenda that the wider interests of the public, patients and survivors are being sidelined?

The problem may be that we are trying to fight a war when what we really need is a revolution.

 

 

 

It’s official: Top 10 research priorities revealed for brain & spinal cord tumours

stu farrimond portrait cropped

Guest blogger – Stuart Farrimond, editor of gurumagazine.org, blogs at realdoctorstu.com

What research should be funded and who should get the money? It’s a fifteen billion euro question – and the answer you get depends on who you ask.

When I practiced as a doctor I believed that medical research should always focus on extending life and finding new treatments. After all, saving lives was why I entered the profession. Emotional, psychological and lifestyle factors are of trifling significance by comparison… or so I thought.

Eight years ago my perspective underwent a seismic shift after I was diagnosed with a glioma – a malignant brain tumour. Only then did I start to realise that well-intentioned research efforts can often miss the point. Treating the tumour alone may extend life, but as a cancer patient I know that life is more than added years. All too often, researchers can set their priorities based on what they consider important, what tickles their fancy, or simply based on with what they have experience in.

Two years ago, Dr Robin Grant, Consultant Neurologist, at the Edinburgh Centre for Neuro-Oncology, set out to find a broader answer to the question of what brain and spinal tumour research should be prioritised.

He gathered key leaders in primary central nervous system tumours, each with a wide network of influence in their speciality, to establish a James Lind Alliance ‘Priority Setting Partnership’. Over the next eighteen months, a collaboration formed between representatives of all those affected by brain and spinal cord tumours: patients, carers, major brain and spinal cord tumour charities and multidisciplinary professional organisations.

The ‘Top 10’ list of UK clinical research uncertainties in brain and spinal cord tumours was developed by the partnership, drawing on the expertise and experiences of all those directly affected by the conditions. Last week, the list was officially launched at the British Neuro-Oncological Society annual meeting, with a call for the assembled researchers and clinicians, and crucially research funders, to use it to inform and guide their own actions.

Here it is:


 

Top 10 priority research questions in brain and spinal cord tumours

1. Do lifestyle factors (e.g. sleep, stress, diet) influence tumour growth in people with a brain or spinal cord tumour?
2. What is the effect on prognosis of interval scanning to detect tumour recurrence, compared with scanning on symptomatic recurrence, in people with a brain tumour?
3. Does earlier diagnosis improve outcomes, compared to standard diagnosis times, in people with a brain or spinal cord tumour?
4. In second recurrence glioblastoma, what is the effect of further treatment on survival and quality of life, compared with best supportive care?
5. Does earlier referral to specialist palliative care services at diagnosis improve quality of life and survival in people with a brain or spinal cord tumours?
6. Do molecular subtyping techniques improve treatment selection, prediction and prognostication in people with a brain or spinal cord tumour?
7. What are the long-term physical and cognitive effects of surgery and/or radiotherapy when treating people with a brain or spinal cord tumour?
8. What is the effect of interventions to help carers cope with changes that occur in people with a brain or spinal cord tumour, compared with standard care?
9. What is the effect of additional strategies for managing fatigue, compared with standard care, in people with a brain or spinal cord tumour?
10. What is the effect of extent of resection on survival in people with a suspected glioma of the brain or spinal cord?


 

The lengths that the James Lind Alliance Priority Setting Partnership process goes to in defining ‘Top 10’ lists is staggering. In March 2014, around 200 people (patients, carers and health professionals) submitted more than 600 research questions on the treatment and care of brain and spinal cord tumours they felt needed urgent answers. These were refined, formatted and consolidated, weeding out questions that previous research has already answered. The resulting 44 questions were then put to another sample of over 200 people to rank in order of priority.

Last November, 29 ‘stakeholders’ used these results to hone in on the ‘Top 10’.This is the point at which I became involved. As both doctor and patient, my priorities were conflicted: the “patient” in me wanted research that could help me deal with symptoms; my “doctor head” however told me that physicians desperately need better treatment data.

These tensions were borne out through the diverse mix of professional and lay representatives. The experienced James Lind Alliance facilitators have the diplomacy skills that could broker peace in any conflict situation and, after six hours of carefully organised voting, ranking and discussions, we finally selected our top 10. Looking back now, it is difficult to imagine a fairer, more representative way to set cancer research priorities.

Thanks to Dr Grant and other volunteers and workers involved in the process, these priorities can now help ensure that future research efforts will improve the lives of cancer patients. After all, improving lives is why we enter our profession.

 

We welcome contributions to this blog. If you have a topic you would like to write about, please send your post to Corinne Hall – chall@eso.net You can find our guidelines here – How to write a blog