World Cancer Day on Feb 4th is an annual event organised by the UICC to spread awareness and debunk myths about cancer. This year, Krebsallianz, in support of World Cancer Day shares the message: Together we can beat cancer. I can. We can.
The UICC campaign has a long list of declarations that help drive action raise awareness against cancer. Their campaign aims to reach all levels of society from members of the public to governments. Together, we can all make a difference in reducing the global burden of cancer.
The campaign aims to raise awareness on issues ranging from prevention to government policies. Krebsallianz has chosen the four following declarations to further promote awareness and support UICC on World Cancer Day 2018.
- We can join forces to make a difference
- I can make my voice heard
- We can improve access to cancer care
- I can take control of my cancer journey
We can join forces to make a difference
By uniting around common goals and aspirations, the global cancer community can leverage the complementary skills, knowledge and spheres of influence of each partner to increase investment in cancer prevention measures, to address inequities in access to quality affordable cancer treatment and care, and reduce premature deaths from the disease. (UICC)
And join forces we did! The ICPCN – The International Children’s Palliative Care Network, also a UICC member, trains health professionals in specialised palliative care. Part of this service is a pain scale app to help children communicate the pain they are experiencing more efficiently. 21 million children worldwide are living with life-limiting or life-shortening conditions. Barely 1% of these children are receiving the necessary palliative care and the majority of them are living in the developing world. For these children, as the disease or condition progresses, unnecessary pain and suffering will occur, including physical, spiritual and emotional suffering.
Previously ICPCN used images of faces to help children describe their levels of pain. Health professionals usually administer the pain scales which are often complicated and difficult to read for kids. The new Child Pain Scale app can be used by children with cancer and other life-limiting diseases with their carers and families.
Krebsallianz joined forces with ICPCN at the beginning of 2017 to help develop their app and fund a training program in Uganda. The program educated 22 medical professionals on the assessment and control of pain in children.
During the workshop, the app was also introduced. Understanding what children with life limiting diseases are experiencing is key to delivering efficient palliative care. The app is now in its pilot phases and we cannot wait to see it in action!
I can take control of my cancer journey
The second important tag line from UICC’s campaign this year helps families understand their options and treatments. The ICPCN’s pain scale gives children a voice and helps them receive the appropriate palliative care.
Cancer patients receiving palliative or supportive care may have particular needs in finding relief from symptoms, pain, and distress. Having access to people-centred, dignity-conserving care where patients take part in decisions, and all their care needs are addressed - physical, emotional, spiritual, and social - is essential to delivering effective palliative or supportive care. (UICC)
The child pain scale app gives children with life limiting diseases the dignity conserving and people-centred care they need.
People-centred care requires that all patients have the education and support they need to make decisions and participate in their own care across the entire cancer journey. (UICC)
Another Krebsallianz project this past year was to support Ana Miron in Moldova with her treatment against leukemia. Ana comes from a low-income family in rural Moldova and took matters into her own hands when she successfully raised the money for her treatment in an online crowd-funding campaign.
Towards the end of her schooling she dreamed of training to become a painter-decorator but this had to be put on hold when she was diagnosed with leukemia.
Good quality chemotherapy treatment is not covered by Moldovan health insurance; her family were on their own. Although they had sold many of their possessions to pay for her treatment they could simply not afford chemotherapy. The bright 17-year old decided to start a crowd-funding campaign online to cover the medical fees. She sent the campaign it to all her friends and family, asking them to share it.
Within just a few weeks she had met her goal of around 1,000€ and was able to buy the right chemotherapy.
Ana remained in the cancer hospital in Chisinau for the course of her treatment. She suffered badly from the side effects and she had to take the chemotherapy in smaller doses.
Being the brave young girl that she is, she got through it. The doctors now needed to see how effective it had been. It was around this time that we heard from our partners, Coram Deo, in Moldova reporting that she needed special blood tests to analyse how, and if, the chemotherapy had worked. These tests are unavailable in Moldova, the poorest country in Europe.
We were ready to help in any way possible. Ana had already taken matters into her own hands once. So, we funded her tests and her trip to Romania where Ana would receive better treatment and more accurate blood test results.
Since returning from her trip, Ana’s doctor is only partially satisfied with the results because the cancer has not disappeared. Luckily, however, they were able to determine exactly the type of treatment she needs to continue due to the accuracy of the test results.
Her father, who accompanied her to Romania, said he is “blown away” by the support of others that are helping his daughter recover. Her story won’t stop here for us as we hope to continue to support Ana and other children suffering from cancer.
This support is a necessary requirement for cancer sufferers all over the world, yet few have access to good quality medicines. One of the main missions at Krebsallianz is to provide good quality treatment to those most in need. We believe everyone deserves a chance at life, no matter where they live.
We can improve access to cancer care
Closing the gap in access to affordable, quality cancer care is an imperative for maximising outcomes and quality of life for all people living with cancer, including children and adolescents. (UICC)
Although we are a small charity, our network reaches far. In the Dominican Republic cancer sufferers in need of chemotherapy have to pay enormous sums of money for chemotherapy.
Patients often take out large loans or borrow large amounts from family and friends. Salaries simply aren’t enough.
Rosangel Batista, a 23-year-old single mother from northern Dominican Republic was diagnosed with breast cancer in the spring of 2017. She had to quit work and her husband left her upon hearing her diagnosis. With no income, she moved back in with her family, who also couldn’t afford the treatment. Rosangel had to borrow money from the bank, and when we heard about her case we were able to donate her chemotherapy treatment.
We can advocate for improved access to cancer treatment and services across the care continuum. All people have the right to benefit from these interventions on equal terms, regardless of geography and without suffering economic hardship as a consequence. (UICC)
Dealing with the fear and isolation that often accompany cancer treatment can be a very difficult task. Nobody should have to go through this alone. There are many support groups and survivor experiences that can help.
I can make my voice heard
People living with cancer and their families, friends and caregivers can be powerful advocates for others dealing with the disease. (UICC)
This past year Krebsallianz has partnered with the German webpage krankheitserfahrung.de. The site was created as a support platform as a result of research undertaken by Dr. Christine Holmberg at the Charité Berlin.
The research included interviewing cancer survivors and recording their experiences. All of the interviews are available on the website. It’s an outstanding resource for those wishing to learn from others who have gone through similar sufferance. We will continue to support Dr. Holmberg’s research into cancer patient experience.
Individuals can also be part of the wider conversation on cancer policy through engaging in public campaigns, communicating with decision-makers, and joining with consumer support groups to ensure the patient’s voice is heard. In this way, cancer patients and their families can inspire change by helping define the issues that matter to them and advocate for measures to address these issues. (UICC)
One individual who stood out for us this year was Samir Shrestha. Ten years ago, in Kathmandu, Nepal, at 17, Samir began volunteering as a trainee counsellor at his local hospital. He noticed how little support any of the cancer patients were receiving and how stigmatised the disease is. Many of the children were sent away by their families because they simply didn’t understand the non-communicable nature of cancer. Since then he has worked very hard to set up a day care centre, where children who have been affected by cancer can come and spend time together, and also seek help. Not only is he giving voice to children but he is breaking preconceptions about cancer by making them heard. A team of volunteers, both local and international, often take the children out for day trips. Samir’s volunteer group began in Kathmandu and he is now expanding his efforts to other hospitals in Nepal.