Tag Archives: prevention

One in three of us: why I help spread the word about cancer

 

desiree branovici

Desirée Branovici is one of 42 peer advisors who help spread the word about prevention and early detection of cancer in the Botkyrka area of Stockholm. This is quite a challenging community to reach out to due to widespread economic hardship and language and cultural barriers. Desirée’s own multicultural background and fluency in Swedish, Romanian, Italian, French and English are invaluable assets for this role. Here she explains why she gives up her time to do it.

Years ago, when I was living in Canada, I had a conversation with some friends about cancer. One of my friends said that, according to statistics, 1 in 3 women will develop some form of cancer in their lifetime. The three of us looked at each other and we could all see fear in each other’s eyes: it could be one of us.

What I saw on my friends faces haunted me. Soon after that conversation I promised myself that I will fight this fear with everything I have. At the time I did not have any special knowledge or support for my fight, so I began to read as much as I could about cancer, about health in general. I became aware of how important it is to be informed about cancer. Information helped me address the fear. I started talking to my friends about it, to my work colleagues, to anyone interested and willing to listen.

Years later I moved to Sweden. While studying SFI [Swedish for Immigrants], a cancer survivor and project leader, Arja Leppänen, came to our class. She told us about a new cancer awareness project that she was leading in the nearby Botkyrka area. We could help spread the word about what we can all do to reduce the risks of cancer.

I was excited to have support and guidance from our municipality (kommun) to educate myself and also to reach to other people and help them. Our training was very interesting. The professionals from the Regional Cancer Centre were extremely helpful and engaging. They were happy to answer any questions and ready to follow up on our suggestions. We were given tools such as flyers to reach out to the many different communities in most spoken languages, and also our own personal cards. Arja and all the other people involved were always ready to help us with anything we needed.

“Understanding how a specific culture deals with sickness is important”

Reaching out to people from so many different cultures is no easy task. Speaking different languages and mostly understanding how a specific culture deals with sickness is important. Some cultures are harder to reach out to than others, but I find that a casual approach to the issue always works. For example, talking about healthy food and lifestyle is a subject that anyone is willing to discuss. Who doesn’t want to be healthy and happy?

I also like to talk to people about exposing themselves to unnecessary chemicals. I always get people’s interest and commitment to be more aware of what they are putting in their bodies and to be pro-active about their health. I always try to make them aware that a body well taken care of will help you win any fight, whether you are fighting a flu, an addiction or cancer. If it happens to one of us that has to fight this battle then one of us will always be there to help you make it through.

Getting cancer information to those who need it most

lena sharp

Lena Sharp is Head of Cancer Care Improvement, Regional Cancer Centre, Stockholm-Gotland

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Arja Leppänen is a cancer survivor and leader of the Stockholm Regional Cancer Centre’s project in Botkyrka

Associations between levels of education, socioeconomic factors and cancer are well documented. Stockholm is no exception – the data show important disparities across the city in the rates of new cancers, rates of survival and attendance levels at screening.

At Stockholm’s Regional Cancer Centre, we are trying to find the best way to help communities most at risk to take action to protect themselves. We’ve started by focusing on a community with the lowest mean income and educational level in the region – the south Stockholm suburb of Botkyrka, which has a large migrant population, with residents originating from more than 100 countries and speaking 160 different languages.

One part of the project is to recruit and educate volunteers from the community to serve as ‘Peer Advisors’. Their role is to inform their peers about health and how to reduce their risk of developing cancer. We now have 42 peer advisors, women and men, the youngest being only 16 and the oldest 63. They originate from 30 different countries, and each speak at least four languages. Six of our peer advisors have been diagnosed with cancer and the others have family members or friends with cancer.

We will compare participation rates in cancer screening programmes before and after the project, and gather supplementary evidence using  surveys and qualitative interview data. The results from the evaluation will guide our future work on addressing multicultural inequalities in cancer care in the region.

One of the peer advisors is a well-known rapper and song-writer, Dogge Doggelito. He lost his young wife to cancer some years ago, has always lived in Botkyrka, and is a role model for young people in the community. His involvement in the project has been very important and has generated extra attention from media.

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Peer advisor Mary-Louise Gwada perfoming at a “Rap-school” for project team and peer advisors, led by Botkyrka’s own Rap-star Dogge Doggelito (left)

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Dogge with project leader Arja

Before the start of the project, the peer advisors were trained for their new role, learning about the European Code Against Cancer, cancer screening, cancer biology and care, patients’ rights, motivational interviewing, and more.

A key part of this project is to organise public information activities in the community to raise awareness about cancer and cancer prevention. Much of this is done in collaboration with cultural organisations active in the community.

Our experience so far is that this work is bringing us closer to people we usually do not reach with other health campaigns in Swedish. The main challenges we’ve encountered include issues related to language barriers, health literacy, and different cultural and/or religious attitudes about cancer.

In addition to the excellent collaboration between people working at local and regional levels, the involvement of people who are not healthcare professionals as well as patient representative at all levels has been very important for the success of the project. The peer advisors are in a unique position to reach populations who may be unfamiliar with the national healthcare system, and may have a low level of health literacy. The fact that the project manager is a cancer survivor seems to have been an important factor in establishing the legitimacy of the project in the eyes of the local community.

The project has attracted good media coverage such as in the local newspaper Södra Sidan , and features on the local council website  and Facebook page. Further information can be found on the website of the Stockholm-Gotland Regional Cancer Centre

 

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Peer advisors spreading information on what people can do to reduce their cancer risk

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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

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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.

 

 

 

The genetic dilemma: prevention lags behind science

Isabel Centeno

Guest Blogger – Isabel Centeno, Psycho-oncologist and cancer patient advocate, Monterrey, México.

 

 

I use to work with breast cancer patients and their families and I´ve noticed that although genetic testing becomes gradually more accessible and better known in my country it is not well accepted; not even considered as a means of prevention.

A new generation of men and women are at risk (even though we know only 10% of breast cancers are hereditary) and the information they receive is “examine your breasts yourself!!”.  This seems too late or at least too risky.

Is it a moral issue or an economic one? Or is it something else?

I don´t have the answer but it is a fact that economic issues play an important role in decisions. How many Mexicans could pay for a genetic test? Who has the money to take preventative action even if the outcome is positive against hereditary cancer?

Medical breakthroughs occur faster than changes in medical and public policy. Psychological and economic issues mean that changes in population behaviour take time and many people die in the meantime.

There are many cancer deaths that could have been prevented but weren´t. Even though we work in the health care industry and are trying to inform and support families and patients we cannot push any further to speed up solutions we know are available.

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