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Amending, suspending, unending

Sharing patient data and the journey of the MoU

 

Ella Johnson is Doctors of the World’s UK Policy and Advocacy Officer.

In early 2017 a journalist submitted a Freedom of Information Request (FOI) asking for clarity on data-sharing practices between the Home Office and the NHS. The FOI revealed a Memorandum of Understanding (MoU) that described a channel of communication between the Department of Health – responsible for the health of individuals and the wider public – and the Home Office – responsible for identifying and deporting people living in the UK who find themselves undocumented. Without the knowledge or consent of doctors and nurses, the NHS was sharing private patient information with Home Office immigration enforcement teams.

The third party in the deal was NHS Digital, the body which ‘guards’ NHS patient records. Healthcare professionals are only allowed to break patient confidentiality and share information with the police in the case of serious criminal offences (murder, manslaughter or rape, as per the GMC guidelines). Yet NHS Digital began sharing undocumented migrant’s information solely to support its immigration enforcement work.

In 2017 the Home Office requested patient address data over 3,000 times. At our clinics, patients told us that the agreement made them too afraid to access care.

 

In May 2018, MP Sarah Wollaston called for indefinite protection for the NHS and an end to its obligatory involvement in passing information to immigration authorities. NHS digital compromised by amending the deal which halted data-sharing in 90% of cases. Then in November following legal action, the government withdrew the MoU entirely.

Campaigners, doctors and patients may have triumphed against the MoU this year, but as it draws to a close there are still inadequate protections in place to defend patient confidentiality in the NHS. On the day the MoU was rescinded the government announced plans for a new agreement, further demonstrating its determination to find new ways to use the NHS to support immigration enforcement. Information-sharing also remains embedded within the NHS charging programme; patients who are unable to pay extortionate bills in under two months are reported to the authorities, and hospital debts block future immigration applications.

Sharing medical records represents a conflict of interest for doctors and nurses looking to maintain the best interests of their patients; that’s why over 4000 of them added their voice to our #StopSharing campaign – to remind the government that medical professionals are not border guards. The risks associated with allowing hostile environment style immigration policy to infiltrate an integral public service like the NHS were highlighted by numerous medics, patients, voluntary sector organisations and statutory bodies. NHS Digital defended the ethics of this agreement claiming address data was ‘at the lower end of the privacy spectrum’ – and so less private than clinical information. They assumed that public interest in immigration enforcement was greater than public interest in a confidential health service.  By sharing patient records with the Home Office, they lowered the threshold for ‘serious crime’ to encompass suspected immigration offences for the first time.

Going forward into the new year, we must remain vigilant against the manipulation of ethical safeguards which are in place to keep the health service independent. The MoU has been defeated in its original terms, but data-sharing was in place before its conception and is continuing in its absence. As a priority, DOTW UK will continue to advocate for a clear distinction between the health service and immigration authorities, and an end to the data-sharing mechanism triggered by patient debt within the so-named ‘cost recovery programme’.

Leaking medical records specific to migrant groups should worry any of us who do not want to live in a society built on double standards and institutionalised othering. We know that a culture of fear within the NHS deters people from seeking care – until they’re too seriously ill or even indefinitely. Its time government stopped gambling with the health of individuals and the public in order to meet its targets. #StillSharing

International medical activists celebrate Universal Health Coverage Day

Today and tomorrow, international activists and advocates will gather in London to share ideas and opportunities in the fight for better healthcare access.

 

With funding from the EUAID Volunteers initiative, Doctors of the World UK have organised the conference to mark Universal Health Coverage Day and bring together medical and civil society professionals to share ideas for healthcare advocacy.

 

The event will explore the challenges and solutions to equitable healthcare for everyone, regardless of their immigration status, socioeconomic status or any other characteristic. It will have and skills and learning focus, with today’s workshops on the power of patient voice from the Say It Loud Club, on medical activism from Docs Not Cops and Medact and international partnership working from PICUM.

 

Tomorrow’s sessions will focus on challenging policing and immigration enforcement in healthcare, with workshops exploring options around firewalling, healthcare in detention and defending patient confidentiality regardless of immigration status.

 

We’d like to thank our EU Aid collaborators, Médecins du Monde Sweden, the Netherlands and Belgium as well as the EU Aid Volunteers initiative for helping to make this happen. The EU Aid initiative aims at strengthening the capacities of local communities and organisations to improve access to healthcare and respond to emergencies.

 

Make sure to follow us on Twitter as we share exciting ideas for achieving Universal Health Coverage in the UK, Europe and beyond.

 

 

#LondonUHC2018

Alongside Doctor Mukwege, Doctors of the World is on the front line, helping to fight against sexual violence

Since 2015, Doctors of the World (through its Belgian office) has been the privileged partner of Doctor Mukwege and Panzi hospital, in the Democratic Republic of the Congo. This support is crucial for the project, which remains fragile despite the international recognition of its founder.

 

“The Nobel Peace Prize has been awarded to Doctor Denis Mukwege and Nadia Murad for their efforts to end the use of sexual violence as a weapon of war.” After spending several years travelling the world to spread word of his cause and winning a number of awards (United Nations Prize in the Field of Human Rights, Sakharov Prize from the European Parliament, etc.), Doctor Mukwege was emotional when he learnt that he had been chosen to receive the Nobel Peace Prize. “Dear survivors around the world, I would like to tell you that, through this prize, the world is listening to you and refuses to remain indifferent,” stated the man who, 20 years ago, began his long fight against sexual violence.

 

Twenty years of struggle

Doctor Mukwege founded Panzi hospital in 1999, in Bukavu (Democratic Republic of the Congo). There, he discovered a tragedy deliberately caused by armed groups: the mutilation of women’s genitals. Deeply touched by the countless victims, Doctor Mukwege quickly specialised to become a world leader in ‘repairing’ the survivors of sexual violence, making Panzi hospital a place providing care, welcome and social healing.

 

A mission under threat

However, not everyone is a fan of Doctor Mukwege’s activities. While his struggle receives more recognition and media attention, he regularly receives threats on his life.“The threats continue today,” he explains. “We always receive one or two a week, but rather than discouraging us, we face up to them.”

The Congolese authorities do not have a positive view of the work of Doctor Mukwege, who has never hesitated to talk about the political problems in the DRC. “Several times, the hospital has had excessive taxes imposed on it, which other hospitals do not pay. They clearly want to prevent us from doing our work.” It is to support the work – which is crucial but constantly under threat – of Doctor Mukwege that Doctors of the World formed a partnership with Panzi hospital in 2015.

 

With Doctors of the World, fighting sexual violence

“With Doctor Mukwege, we started from the idea of a shared utopia: one where victims of sexual violence are cared for but also recognised as victims,” explains Éric Wynants, coordinator for Doctors of the World at Panzi hospital.

At the hospital, Doctors of the World provides two of the four pillars of the project’s ‘holistic’ approach: medical care and psycho-social care. The two other pillars – legal assistance and socio-economic reintegration – are provided by other parties, including the Panzi Foundation. “This is the benefit of this system, which has been recognised and replicated in several countries: it is not a medical intervention with no follow-up, but instead comprehensive care to allow survivors to resume their lives under the best conditions.”

Since 2015, the partnership between Doctors of the World and Panzi hospital has been bearing fruit. “First financially, as despite our renown and the importance of the work done there, Panzi hospital is almost entirely dependent on international support,” stresses Éric Wynants. “Next, the advocacy of Doctor Mukwege is significantly amplified by Doctors of the World, in particular through our international network.”

Finally, the collaboration has been very productive in the field, where good medical practices, expertise in various areas related to sexual violence and in the use of tools are shared between the teams.

 

The future of women

Today, in the DRC, rape is not only a weapon of war, but a common practice among civilians, especially former child soldiers. The victims themselves are increasingly young, with some being under 10 years old. But for all this, Doctor Mukwege believes the future will be better. Things have changed since he started, 20 years ago. “Congolese women are mobilising. Today, they have the courage to speak out, to stand before courts, to bring their tormentors to account.”

This is a change that the work of Doctor Mukwege has contributed to heavily, and that Doctors of the World will continue to support in the years to come.

 

Joint INGO Statement Welcoming The Upcoming Consultations In Sweden

Health groups appeal European Patent Office decision to uphold Gilead’s patent on hepatitis C drug

Paris, 5 December 2018—Six organisations have just appealed the European Patent Office’s September decision to uphold US pharmaceutical corporation Gilead Science’s patent on the key hepatitis C drug sofosbuvir. The appeal – filed by Doctors of the World, Médecins Sans Frontières (MSF), AIDES (France), Access to Medicines Ireland, Praksis (Greece) and Salud por Derecho (Spain) – states that the European Patent Office (EPO) should revoke Gilead’s patent because it does not meet the requirements to be a patentable invention from a legal or scientific perspective.

The appeal comes exactly five years after sofosbuvir was first approved for use, in the US, where Gilead launched the drug at US$1,000 per pill, or $84,000 for a 12-week treatment course. The corporation has made more than $10 billion in profit from sales of the drug in the last five years.

In March 2017, 33 civil society organisations from 17 European countries filed a challenge against Gilead’s patent on the base compound of sofosbuvir, stating that Gilead’s patent claims were not legitimate, primarily because they lack inventiveness.

Gilead’s monopoly on sofosbuvir in Europe has allowed the corporation to charge excessive prices for the drug. In some European countries, Gilead charges as much as 43,000 euros for a twelve-week treatment course, when generic versions of the same course can be purchased for less than 75 euros outside of Europe. These exorbitant prices have forced health systems to ration sofosbuvir, leaving thousands of people in Europe with hepatitis C without treatment.

However, despite compelling arguments presented by the organisations opposing the patent, on 14 September 2018, the EPO decided to uphold Gilead’s patent, thereby making it impossible to produce or sell affordable generic versions of the drug in Europe.

“The EPO is being too lenient with pharmaceutical corporations, giving them a free pass,” said Olivier Maguet of Doctors of the World’s drug pricing campaign. “There needs to be much greater scrutiny in Europe when it comes to determining whether pharmaceutical corporations deserve patents or not; otherwise, unmerited monopolies will continue to result in out-of-control drug pric­­­es.”

The appeal aims to put an end to pharmaceutical corporations’ abuse of medicines patent systems to increase profitsin countries outside Europe, where patent offices often follow the EPO’s decisions when they examine patents filed by pharmaceutical corporations. As some new patented drugs – such as those to treat cancer – come to market with price tags reaching 400,000 euros per person, there is an urgent need to reform patent systems so that people have access to the medicines they need to stay healthy and alive.

“Unmerited patents in Europe are giving pharmaceutical corporations the monopoly power that allows them to charge exorbitant prices for many lifesaving drugs,” said Gaëlle Krikorian, Head of Policy at MSF’s Access Campaign. “The excessive prices Gilead is charging for sofosbuvir have kept this breakthrough medicine away from millions of people with hepatitis C – in Europe and around the world. What is the point of medical innovation if people and health systems cannot afford the products coming out of it?”

Editor’s notes:

To know more about the development of sofosbuvir, a true breakthrough drug for hepatitis C, watch this video: When Big Pharma plays for keeps, who wins and who loses?

Interview With Dr. Edmun Rabban, Health Program Coordinator in Dohuk, Iraq

Dr. Edmun Rabban is a medical doctor who has been working with Doctors of the World Middle East since November 2014. He began as the Team Leader of  Doctors of the World’s first mobile clinic, and later took up the positions of Medical Supervisor in March 2015 and Medical Manager in August 2016. He is currently working as a Health Program Coordinator since November 2017.

What did the picture look like when you first started working with Doctors of the World?

The set-up was completely different back then compared with today, as we were in a context of emergency then. We started off with mobile clinics and worked in tents with Internally Displaced Persons (IDPs). At that time, most of the IDPs were Yezidis who were fleeing persecution from the Islamic State (ISIS).

Our two main priorities back then were: 1) facing the emergency at hand 2) controlling the health situation. Moreover, the majority of IDPs had not received any aide, including healthcare, for a long time and that made the situation much more complicated. We were also faced with critical cases of malnutrition, which we referred to secondary healthcare facilities – hospitals.

Since the beginning, our main goal was thus to ensure access to healthcare services. Another important part of our work was to coordinate our activities with other Non-Governmental Organizations (NGOs) and the local Directorate of Health (DoH) – under the Ministry of Health.

What activities did Doctors of the World put in place to respond to the crises at hand?

Doctors of the World basically went where the needs were, that is to say in Al Amedi district, in IDP camps, and in villages where IDPs sought refuge. The Chamesku IDP camp was established in 2014 and Doctors of the World began to provide Primary Health Care (PHC) services within the camp from December 2014 onwards. Chamesku Camp is the largest IDP camp in Northern Iraq, which provides refuge for over 27 000 displaced persons. It is mostly inhabited by the Yezidi community (95%), who have been particularly targeted by ISIS.

Doctors of the World has always prioritized working in close cooperation with the DoH of Dohuk in ensuring access to healthcare for IDPs in Chamesku camp, and continues to do so today. Services provided includes primary healthcare, sexual and reproductive health, and mental health and psychological support.

At the outset, Doctors of the World worked mainly in IDP camps, but afterwards began supporting PHC centers in the governorates of Dohuk and Ninewa. Today, Doctors of the World works to provide healthcare facilities with essential drugs and medical supplies, but also covers their operational costs. Support activities further includes capacity building and on-the-job training of local (DoH) medical staff, with the objective of accompanying the DoH in the recovery of the healthcare system.

Today, the health situation is somewhat under control, as we are no longer in an emergency phase. As such, we are seeking to develop sustainable activities. For example, we recently requested and obtained a card from the DoH which enables beneficiaries to benefit free of charge from treatments if they suffer from a chronic disease.

What are the challenges ahead?

The top current and forthcoming priority is mental health (MH). The large-scale displacement experienced by many has caused significant psychological and social stress on families and communities, affecting their mental and psychological wellbeing. Additionally, many people have been living in camps for years, in precarious conditions, very far away from their homes. This has only increased their vulnerability, making them more likely to develop mental problems. Moreover, the informal community networks that often regulate community wellbeing were disrupted. For many, this has led to the development of social and psychological problems, while exacerbating existing problems, thereby increasing their vulnerability.

MH workers have witnessed severe cases of depression and bedwetting, among others, but they have also been lucky to see remarkable changes. I remember the drawings of the children at the beginning; they were very violent – depicting blood, weapons, fighting and ISIS members. Within one year, the drawings had greatly changed, as the children started to draw suns, gardens and animals. For me, this is proof that there is hope and so we must continue our efforts. It is very important to advocate for MH inclusion within the healthcare system. It is about changing laws and practices in order to ensure sustainable development in mental healthcare.

Nonetheless, the needs remain great. In Iraq, the mental health policy is very weak. Mental health exists on paper but not in healthcare facilities. University curriculums are psychiatry-based and do not focus on psychology. The shortage in human resources is a real problem and does not allow to meet the needs. The Ministry of Health does not have the necessary resources. They are willing to do more, they believe in it, but they do not have the capacity. It will take some time. I strongly believe that we should focus on children, while developing other activities for adults, such as social support activities and counselling.

Another priority should be gender-based violence (GBV). The main focus of the DoH in terms of GBV has been on responding to the needs of ISIS survivors, while forgetting about other types of GBV in camps, such as domestic violence which is recurrent but hidden most of the time. It is therefore important to raise awareness on GBV and incite survivors and communities to be more comfortable talking about the issue. Building capacity is also important. Doctors of the World recently conducted a workshop to explore the current needs and possibilities of capacity building.

Last but not least, SRH is another main priority. To alleviate the workload of doctors, there is need to increase the capacity of SRH nurses and receive recognition from the DoH. A special focus should be put on family planning, which is greatly lacking among IDPs and host communities.

A difficult story to tell this Christmas

Channel 4 features our Christmas appeal and maternity charging

Mary was pregnant as result of a ‘corrective’ rape, which was to cure her homosexuality.

After the event, she was rejected by her family, sent to the UK, and found herself alone and scared. She had nowhere to turn and for months hid her pregnancy and the reason why she was in London.

Up to her third trimester, she had never seen a doctor.

Mary eventually visited Doctors of the World clinic in Bethnal Green. The team moved quickly, got her registered with a GP and access antenatal care, and provided nappies and baby clothes.

“Doctors of the World is my family now” says Mary.

She gave birth to a beautiful baby girl at the end of July and is delighted everything went well in labour and delivery. Now, Mary often comes around the clinic to show her baby off.

Your donation this Christmas can ensure we help more women like Mary, keeping our clinic and helpline open in 2019.

From a public health perspective, it is awful to see women denied basic healthcare because of a lack of money. 

Doctors of the World works to ensure that women like Mary get an empathetic response, respect, and practical help. Women often leave our clinic smiling when they arrived in tears.

By giving, you will help other women like Mary at a difficult time. They place enormous value in having a routine antenatal check, listening to their baby’s heartbeat, getting pregnancy vitamins and information on pregnancy health. And so do we. 

Please support our Christmas appeal today. For Mary, and for women in vulnerable circumstances.

*Name changed to protect identity

*Picture does not represent Mary