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Cancer treatments: we must serve patients, not private interests

Dr Françoise Sivignon, President of Doctors of the World, France.

The number of new cases of cancer continues to rise, reaching 3.7 million a year in Europe. Behind this increase lies another equally worrying trend: the rising costs of new treatments. It is no longer unusual to see cancer treatments costing between €50,000 and €90,000 per patient, per year. Worse still, prices reached new heights a few months ago, with the introduction of CAR-T therapies, billed at between €300,000 and €350,000 per patient.

Given this situation, healthcare systems are finding it increasingly difficult to ensure everyone has access to the best possible drugs. The exorbitant sums charged for cancer drugs approved by States today will constitute barriers to accessing healthcare tomorrow.

In other words, at these price levels, healthcare systems will no longer be able to pay for every patient, forcing some to be excluded from treatment.

Abuse of the patent system

These exorbitant prices are made possible by a patent system that ensures industrial pharmaceutical companies can retain their twenty-year-old monopolies. Thus, it guarantees that there will be no competition from generic and biosimilar drugs. For sixty years, drug patents in Europe have been organised as a means of promoting research and development. This system has deviated significantly from its original principle and is now subject to abuse.

The fact is that the major pharmaceutical firms invest little in research. New compounds are actually created by start-ups, which are subsequently bought up at high prices – often in the region of billions of euros – by industrial drug companies. For example, Yescarta®, Gilead’s CAR-T therapy, was not developed by this firm but by a different company, Kite Pharma, which was acquired for 12 billion dollars in 2017.

Sixty years after their creation, pharmaceutical patents are now principally financial assets and a source of income and profits. Cancer research has become as much a potential growth sector as a battle for health. It is clear that the sums billed to States include the cost of any financial transactions relating to mergers and acquisitions.

When individual citizens pay their taxes and national insurance contributions, they are therefore also helping finance these speculative financial deals. By accepting drug costs based on the misuse of patents, States make themselves complicit in the abuse of public taxes for private gain, at the expense of the health and lives of those who are ill.

Putting access to care back at the heart of the system

None of this is inevitable, however. When arrangements for pharmaceutical patents were first put in place, States voluntarily adopted measures in the form of compulsory licensing to circumvent monopolies when public health demanded it. This tool, which has since been recognised in international law, is the reminder that a reciprocal condition of drug patents is the fundamental right to access health services.

It is the duty of governments to ensure that their healthcare systems are sustainable. To mark this year’s World Cancer Day, we are therefore calling on them to guarantee that access to healthcare for all takes precedence over the private interests of the few and to use the legal tools and means at their disposal to make this happen.

Nothing less than our health and our lives are at stake.

The situation worsens in Borno, Nigeria

Civilians in Borno state, North-East Nigeria, are suffering greatly due to conflict and violence. 250,000 children, women, and men are already displaced across the region. Following recent attacks by Boko Haram, an estimated further 80,000 people have been uprooted. 30,000 fled last weekend alone.

Charles Kiplangat, Emergency Response Coordinator in Nigeria, reports on the latest developments:

“In Maiduguri, the Teachers’ Village Camp registered over 29,125 newly displaced persons. More than 6,714 are in need of shelter”

The situation in the camp is dire: its capacity is 10,000 people. Women, children, and men are arriving in already over-crowded camps, where food, housing, and basic services are scarce.

There is also a huge gap in term of WASH: 150 latrines and 150 bathrooms are required while only 30 have been constructed. Lack of hygiene facilities could lead to the spread of diseases, including cholera and diarrhoeal diseases.

“The situation is even expected to get worse because the influx is still ongoing and the upsurge of violence is still displacing people.”

Doctors of the World has been working in Borno since the end of 2016 with the aim of improving access to care for vulnerable populations,  whether  they are displaced or natives of the region.  Two mobile clinics cover the camps of Maiduguri and the area around the capital of Borno State.

Due to the situation worsening, Doctors of the World has decided to implement health services in the Teachers’ Village Camp. This will mean providing a package of activities including Sexual and Reproductive Health, Gender Based Violence and Mental Health services. We are working against the clock to ensure displaced people are able to access healthcare in a very unstable situation.

Please, consider supporting Doctors of the World’s work to ensure we can respond when crises arise.

A forest in Morocco

There is a forest in Morocco, extending between Tangier and Tetouan. Few people are aware of its existence. Like its oaks and cedars, the refugees and migrants that live among them also remain unseen.

In 2018, Doctors of the World received funding from the Migration Emergency Response Fund (MERF) to support a project for refugees and migrants in the area. We intervened to improve living conditions and access to basic services for the most vulnerable surviving in the forest and urban camps.

This meant distributing kits for the winter to prevent infectious and respiratory diseases and improving protection, providing medical care, shelter, and referrals to other organisations, for extremely vulnerable people. We scaled up our current work programme to make sure even the “invisible” could access healthcare.

Working to help over 8,000 people, Doctors of the World’s intervention focused on communities, empowerment, and systematic change to ensure long term success.

The power of community

 

“Migrant camps in Morocco have a very strong internal organization: several communities cohabit in the same space but in separate zones” reported the project manager.

Considering these social dynamics, our project involved community leaders from the very beginning to give a voice to all the population.

In the urban camps in Casablanca, Agadir and Tiznit, community leaders made it possible to work closely with those who needed us. Thanks to them, we could address the most important medical cases and ensure new and urgent cases were referred to our local partners.

Collaboration and partnership with migrants associations’ was also a very important: “diaspora” groups in Morocco are organizing well targeted activities and services for their co-nationals. Moreover, they are seen as a point of reference.

In Rabat, among other places, we coordinated with leaders and migrants’ associations to reach more migrants and increase the impact of our work at a time when many people were arriving due to push-backs in other parts of the country. Coordination was fundamental to improve living conditions in the emergency houses offering short-term shelter to unaccompanied minors, pregnant women, or injured people.

Needs and adaptation

 

Collaboration and contribution from the community was not only fundamental to identify the most urgent cases, but also to continuously improve and adapt the project to the needs of our patients.

The project manager told us that the distribution strategy for so-called “winterization kits” was highly improved by the input of the different community leaders. These kits were key to preventing infection, and respiratory diseases, and had to be distributed to the population in an effective way.

The community provided us with insight on how to better execute the distribution, participating actively in the final decision and the process itself. For example, in different places across Rabat, we considered a range of issues, such as the target group, the immediate need, the environment and the security of our team, to decide on the appropriate distribution method: door-to-door, individual distributions after sensitizations sessions, or collective distributions to groups.

Positive results

 

The MERF project in Morocco has made changes to the living conditions of many people, especially in the south where migrants living in very poor conditions.

People living in such temporary camps are very isolated and receive little to no assistance and our support helped them get basic items and services they needed without them having to take risks.

This cooperative strategy enabled us to provide over a thousand migrants with health consultations, screenings, and orientation towards public health services ensuring access to healthcare would be durable. We also opened 5 new emergency housing projects for specific categories of vulnerable migrants (unaccompanied minors, pregnant women, patients under treatment) and supported 6 others for women late in their pregnancy or with new-born babies.

The need for long term support

While this emergency project can be considered a success, the need for long-term support and a sustainable response remains.

A single intervention in a camp is not enough to significantly improve the health of people there. When we attend an operated leg fracture, the follow-ups are as important as the operation itself, and failure to carry them out can cause more and greater problems than the fracture itself.

The migrant population in Morocco needs structural and ongoing support. Some of our beneficiaries highlighted the need for a bigger, continuous programme:

“Do not come once a year, it is not necessary that things stop, do not forget us again, the need does not finish”

 

It is important that support for migrants stranded in Morocco continues, and that local healthcare systems are strengthened. Thanks to MERF, lots of work has been done, and we will continue striving to create community-lead, empowering, and sustainable access to healthcare. So that no one remains invisible.

Mona and Samir, a new chance

In August 2014, ISIS attacked the Iraqi town of Sinjar, targeting the Yezidi community. They executed men and abducted thousands women and children.  Mona and Samir, a mother and son. were amongst them.  Soon, 8 year-old Samir was separated from his mother.

 

Mona was sold as a slave in Mosul, and subjected to two years of physical, sexual, and emotional violence before her rela­tives found her and paid for her freedom. To protect her, they took her to Chamesku camp in northern Iraq.

A year later, Samir was also found and brought to the camp to be reunited with his mother. 

He had lived for three years under ISIS rule and been kept as a servant where he was subjected to severe abuse and propaganda. He was trained in methods of violence and learnt how to make explosive devices, how to use different weapons and witnessed torture, and beheadings.

When he first came to the camp, his behaviour was not typical for a child his age. Samir was had strong radical beliefs and no interest in socializing with other children or adults. Mona reported that he was aggressive at home and he continued to follow ISIS activities on social media and TV. He refused the support of mental health worker due to her gender and because she did not wear a hijab.

 

In the beginning, it was important to not put pressure on Samir to change his beliefs but to take time to build his trust and get him the support needed. Mona had to show unconditional love and acceptance, and avoid ideological debates.  His mother has helped establish a new and healthy daily routine. Everyday activities for a boy his age, like helping his mother in the house, socialising with other children and playing sports were new to him. Samir now joins activities with other children his own age, and happily socialises, showing good communication skills.

He has begun to settle into his new school and aims at great academic achievements. His favourite activities are drawing, singing and playing football.

Samir no longer follows the videos and activities of ISIS. 

Gul, 63 – Testimony of Rohingya

As soon as she started talking, tears came to her eyes. If it is too painful, if it brings bad memories to you, you do not have to talk. When I told her these words, she said she wanted to talk, she wanted to bear witness. She works as a TBA (Traditional Birth Attendant) for an INGO. As a Rohingya woman she has less opportunities to go outside than men, but she has a strong will.

In her own words she explained what the Rohingya Identity is.

(Akiko, Doctors of the World Nurse)

Everyone got scattered on that day. I do not know where my family is. I ran away with my neighbours to Bangladesh. And, Ah, my son and father-in-law were killed by the army and the Buddhist people form Rakhine. Now I live here, with the remaining 6 members of my family.

I am a TBA. When I was in Myanmar I was working at Malteser (German NGO). In addition to my role as a TBA, I was in charge of vaccination, polio treatment, and the like. Malteser’s clinic was the only free clinic we had. Other hospitals would only take patients who could pay an extra treatment fee. Poor people with severe illnesses and no money could only wait for death, without any medical treatment.

Now I am worried that the shelter we live in won’t last long and will collapse. I made it with my own hands. Only bamboo was provided, I bought all the other materials myself. Illness can make us succumb, I have pain all over my body. Neither my husband nor I have any income, we cannot eat anything. Without money we cannot buy nutritious products like meat or fish. The only food we get through distribution is rice, oil and beans. I would like to have gas for cooking.
I wouldn’t say that the Bangladesh government is doing bad job on the contrary I think Bangladesh is doing a lot of efforts.

It took seven days to come here. I lost everything. Only the people who have experienced our suffering and difficulties can understand that I came crawling but I arrived. I want to tell our plight to the international community and ask for justice. If there is justice, we will return to Myanmar. To that end, civil rights and human rights must be guaranteed. I would like the international community to work diligently to ensure that human natural rights can be secured for us when we return. I would like to return to Myanmar.

Myanmar government does not recognise Rohingya as an ethic group. We have been a Rohingya for a long time, through many generations. When Japan and the UK fought in Myanmar, Rohingya were involved. There should be evidence to show that Rohingya existed. Yet, I do not know why the Burmese government suddenly came to call us as Bengali. We are Rohingya, that’s it.

Ali 43, Shobeer 30, Dil 63 -Testimony of Rohingya

Three men. As we were discussing how Rohingya people had been deprived of their identity, their calm and gentle expression changed completely. They started to get very talkative and everyone was talking at the same time.

About half a month after listening to their story, there was a demonstration aiming to put the name Rohingya on the ID issued for the camp. “Rohingya people”. The name is now denied by both Bangladesh and the international community. Demonstrations are manifestations of their anger.

(Akiko, Doctors of the World Nurse)

 

Ali, 43

I am grateful to the government of Bangladesh. Nobody was there to help those who helped me when I first arrived here. Now organisations such as INGOs are helping too and support services are available. I am really grateful for that. Now I am able to live peacefully without risk of being killed.

But, I’m worried about being forced to return home. If human rights and safety are guaranteed, we would like to tell the international community that we are going to return.

 

 

 

 

 

Shobeer, 30

First of all, I would like to thank Bangladeshi people and their government for their hospitality. They allowed us to live here. However conditions are very rough. If I could return to my original life, I would like to return to Myanmar immediately. Here, we get rice, beans and oil distribution and I think it is undoubtedly appreciated. But what about fish and meat? I cannot buy it because I have no job nor money. In the past, a clinic was nearby, but it disappeared without notice. It is quite troublesome not to be able to receive any medical care, but it is not our only issue. There are also no school. Children cannot receive education either. I want to return to Myanmar, we should be given legitimate citizenship, like the people of Bangladesh. I would like to be able to live in Myanmar with a legitimate status.

May I tell you something? You are Japanese, so you should know that Japan and the UK fought in Myanmar during the Second World War. It was a war between Buddhists and Muslims. After that, the Myanmar government has acted brutally against Muslims, stole our land, deprived us of our citizenship and attempted to exterminate our ethnic group. I believe that Japan has the power to solve this problem and I want the Japanese government to encourage the government of Myanmar to secure the human rights of Rohingya people. The promise to grant civic rights here without granting citizenship rights and returning to Myanmar is obviously unfair and unreasonable.

 

Dil, 63

I would like to thank Bangladesh for supporting us and allowing us to live here. I appreciate the support, but the longer I live here, the harder it is to live. Especially because of  the lack of food, every day the same, only rice is distributed. As you can see, there are lots of children all around here. In addition, there is no school. Children need to learn Burmese for when we return to Myanmar someday. We need a hospital. There are no facilities that can treat diseases of women and children.

As for the return, one can only feel anxious. In Myanmar, there is neither a guarantee of safety nor a system of monitoring. The return will be realized for the first time under the guarantee of security and citizenship, a process with dignity. Indeed, everyone is afraid that they will be housed in IDP camps and facilities and killed when returning.
The Bangladesh government and the United Nations are trying to issue smart cards as IDs, but there is no indication of Rohingya status anywhere on these IDs. There is no mention of safety and dignity in the agreement on return, in these conditions there is no way we can agree. The government of Myanmar should ensure in writing, the recognition of our Rohingya status and our human rights. Rohingya exist, it was recognized properly as a nation in past documents. There is proof, we can show you. The government of Myanmar destroyed our lives, but we are now here.

Husson, 30 – Testimony of Rohingya

On his way to Bangladesh, Husson saw a crying boy whose parents had just been killed. He looked after the boy with his family all the way to Bangladesh. The boy is said to have become an important member of the family now. It is hard to believe that Husson has faced such unimaginable violence and persecution. But occasionally, angry feelings mix up with his tranquil appearance and gentle talk.

(Akiko, Doctors of the World Nurse)

 

I have been working as a volunteer for Doctors of the World since January this year. Now, what we need in the camp here is a school, as education for children is particularly necessary. There are places to play and study where support from NGOs is available but one needs a solid education. We do not have any experienced teachers here. Most refugees have been here for over a year, considering that education for children is one of the most important duties we have to provide, I really want to manage this task.

 

And then we need clinics. Families are roughly of 5 to 8 people sometimes 12. There are so many tents, and camps are densely populated. The number of clinics is overwhelmingly small compared to the population density. The necessary medical care is far from being sufficient.

 

I arrived in Bangladesh on August 30, 2017. The raid started at about 3am on the 25th of August 2017 with shooting, arson and rape. I even saw a child being thrown into fire. Violence continued until around 7 in the morning. The house where I used to live also went up in flames, my sister was raped and terrible atrocities went on and on. Around 6am the fire’s momentum increased as the places to escape diminished, we decided to leave Myanmar. Not to get caught, we followed the road along the mountains and ran away hiding from the military and from the Burmese of the Rakhine state. We did not have anything to eat and spent two days in the mountain. After walking endlessly, somehow, we arrived at the Bangladesh border, where we were blocked from entering the country by a guard. Because we were so hungry, the soldier felt sorry for us and he gave us snacks. That night, we were allowed to enter Bangladesh.

 

On the way to Bangladesh, we saw a 10 year old boy walking. He was crying. “My parents died”. He cried when I called out, he was alone. The boy travelled with our family all the way to the camp, and after we arrived, I tried to find out where his parents were. Both his parents had been killed in Myanmar. I wonder who killed them, until now, I still do not understand.

 

 

I have three children, 8, 6, and 3 years old. Today, the boy became a precious member of my family, he is my eldest son, yes, and we live together as a family.
The camps are filled with children in similar circumstances. Like our family members, there are many Rohingya people who adopt children who lost their parents and their families.

 

Even before August 9, 2017, there was persecution against Rohingya. However if one could afford paying expensive medical fees, one would be treated at the hospital. But since August 9th 2017, it has become even harder to receive treatment. If I go to a hospital now, Rakhine people will be seen as priority and I will be kept waiting for hours until there is no more time for me to be seen by a doctor. August 9th 2017 is the day when new persecution began. From then on, there is no way other than going to Bangladesh when medical treatment is absolutely necessary.

 

Even when my wife was pregnant in 2015 -at that time we could come and go through the border by paying a certain sum of money- there was a problem and we both people headed to Bangladesh. Shortly after the full moon, while holding her big belly, my wife and I walked to Bangladesh, crossed a river that was a border, and there she bore our third child.

Many people were sacrificed. Rape, arson, shoots, those who are here are those who could survive the atrocities. Although we are safe here, we have no vision of our future.

 

 

Shamshu, 25 – Testimony of Rohingya

A divorced woman who lives alone risks much more to live in harsh poverty than one in a household where a man lives.

When asked: “What do you need?” She replied: “I have nothing at all, I need everything”. Generally, Rohingya women rarely go outside on their own and do not talk to strangers. Hence, it is hard for supporting services to reach women’s only families. Shamshu has been traumatized, she is anxious and alone. Everything she says is negative, it gives me the sad impression that she has giving up on life.

(Akin, Doctors of the World Nurse)

 

I came here a year ago. What I am having most troubles with in my life now is food and clothes. Rice is distributed only once a month. Most of the time I cannot cook, there is no electricity not even a bucket, because of that I cannot carry water.

Last summer, many horrible things happened: abduction, rape, arson, murder. My cousin was killed in the midst of everyone’s escape. I also saw the military killing five people at a time.

I ran away and ran for a while until I couldn’t hear any more violence. After that, I thought that I could manage to live somehow and I went back to the village once, but my house was also burnt and there was no more trace of it. Then, with my neighbours, we fled all the way here after hiding in the mountains for 10 to 12 days.

Now I am living here alone. Recently I got ill, but I cannot buy any medicine because I do not have any money. For about 10 days I was patiently surviving in these conditions, but I am slowly losing patience and becoming more and more anxious. Loneliness doesn’t help.

Muhammad, 11 – Testimony of Rohingya

While listening to the story of an 11-year-old boy who never showed a smile, I wondered if he was at the age when a teen’s voice changes, as his voice sounded hoarse. To questions, he would spend time thinking before answering. His father was shot dead in front of him, and the boy himself had to shoot bullets before escaping and running away to Bangladesh.

In what state of mind did he cross the river and the mountains?

At the camp he looks after his 6 young brothers, because there are no more adult men in his family. The shelter where they live is nothing more than that of other families, they live in extreme poverty, and there is not even electricity.

(Akiko, Doctors of the World Nurse)

 

I arrived in Bangladesh on 25th August 2017. I live with my mother and six younger brothers here. I am the eldest son. My biggest concern is that there is no food, especially meat and fish.

 

In Myanmar, I lived in a village close to the border with Bangladesh.

 

That day (August 25, 2017), the army came and burned my house. My father was shot by a soldier with a gun and died. I was also shot here, in the abdomen. We couldn’t take care of my wound so we fled right away to Bangladesh. As soon as I arrived in Cox’s Bazar, I was taken to a hospital where I underwent surgery.

 

When it all happened I was home with my father. But I didn’t die and I am here today.

 

It’s hot here, I do not like it. I have not even gone to school. At least I have friends. In Myanmar, I also went to a Madrasa, a school that teaches the foundation of Islam. I would like to go to a similar school now.

 

I want to return to Myanmar, because my father is there. I want to go to his grave.

 

 

Now, what I need most is gas in order to cook, then medicine. I have insufficient medicine and it does not work.

I think that the government of Myanmar should give citizenship to Rohingya. Then we could go home.

 

On our land, we should be able to move freely anywhere as we please, we should be able to study. And finally violence and discrimination should stop.

 

I have a favour to ask to the government of Japan: help make Myanmar work towards these changes.

 

My father was an Imam. When I become an adult, I want to become like my father, an Imam, I want to teach the Koran to the little children.

 

Jahida, 17 – Testimony of Rohingya

It is said that half of the camps refugees are children. Minors who lost their parents and families or got lost. She is 17 years old, and still has a little girls’ voice. To the question: What kind of job would like to do? She answers joyfully: “I would want to work in any kind of field, as long as the opportunity presents itself I would do anything. But I really like clothes so if it could be possible I would like to work with clothes”

(Akiko, Doctors of the World Nurse)

 

I arrived in Bangladesh in December 2017. My father died before, on August 25th 2017. My mother was killed during the riots last August. I do not know who killed her as at that time it was chaos: there were arson, shooting, rape, and so many horrible things happened all around.

 

I have an 18 year old brother and a 12 year old sister. I lost them as we were fleeing to Bangladesh. I have been looking for them ever since: through the internet, CIC (Camp In Charge), announcements in the camp, through bulletin boards.

 

I keep looking but I haven’t found anybody yet. Maybe they are still in Myanmar. I want to find them, I want to see them.

 

At the camp, I was accepted to live at Maji’s house (leader of the Rohingya Community).
My biggest concern is finding food. Also, when I need to go somewhere, I do not have any money so I cannot ride a tuk tuk or buy anything.

 

When I was living in Myanmar, I went to school for only three years. It was between age 7 and 10. I would like to continue and learn English and Burmese but since my parents passed away I cannot really do that.

 

We should have the land where we belong back. I think we must be able to live freely and independently.

 

Although I miss Myanmar, I am still scared and cannot return.

If citizenship was guaranteed, I would like to return. In the meantime if I could study here before going home, it would be an asset for the future.

 

I really want to learn.

Testimony of Rohingya

On August 25, 2017, Myanmar Army conducted violent raids in Rakhine State (Western Myanmar).

The number of people who fled to Bangladesh exceeded 700,000, crossing the border from Western Rakhine State, where Rohingya live, to Bangladesh. 700,000 people escaped a large-scale sweeping operation to save their lives.

 

They became refugees, leaving behind their past and present life, for a future that is mostly uncertain. Girls never talk about their future dreams, they do not even grasp the meaning of the question. Women who underwent big trauma are still frightened. Men tormented because they cannot protect their family from suffering.

 

We must echo their voices and convey their testimony.

 

Doctors of the World Japan is working in the camps in Bangladesh. They have collected testimonies and stories from Rohingya refugees. Please, help us echo their voices.

 

You can read their stories here:

 

Jahida, 17

 

Muhammad, 11

 

Shamshu, 25

 

Husson, 30

 

Ali, 43; Shobeer, 30; Dil, 63

 

Gul, 63