Saturday 28th February is European Rare Disease Day 2015, which aims to raise awareness of rare diseases and the impact they have on the lives of people who suffer from them.
A rare disease affects fewer than 5 in 10,000 people. In Europe alone it is estimated that 30 million people suffer from a rare disease but the true figure may be higher due to under-diagnosis.
For example, Dystonia is a little-known brain disorder that causes continuous muscle spasms and severe pain but because it is not revealed in brain imaging it can take years to diagnose. Raising awareness of rare diseases, such as Dystonia, can help to reduce the stigma and isolation experienced by patients and make mis-diagnosis less likely, and I hosted an event in the European Parliament last year to help raise awareness of the condition among my MEP colleagues.
Rare diseases like Dystonia can be chronic and debilitating and don’t just affect the lives of patients, but also their family and friends. Because they affect a relatively small number of people, these are conditions that most doctors will never see. Once someone with a rare disease has overcome the challenge of getting an initial diagnosis, they may find receiving the right treatment an even bigger hurdle.
Fortunately, being part of the European Union means that someone with a rare disease in one country can see a leading expert in another EU country as the Cross-Border Healthcare Directive gives EU citizens the right to seek treatment abroad if the treatment they need isn’t available at home.
Cooperation at EU level is really important for providing a platform for sharing best practice and expertise and the European Commission has developed an EU-wide Strategy on rare diseases to help Member States coordinate work on research and development and ensure that patients have access to expert healthcare. I helped to negotiate the EU’s Health Programme 2014-2020, which has a budget of €449.4 to help hospitals, charities, patient groups and universities collaborate on a wide range of health projects. In the past, the small number of people affected has led to a reluctance to invest in research into rare diseases so the EU also offers incentives for researchers and pharmaceutical companies to work on developing treatments through the Regulation on Orphan Medicinal Products.
Having previously worked as a medical scientist, I have a strong interest in health issues, and in particularly rare diseases. During the last term I led the European Parliament’s work on a new Regulation on Clinical Trials. The new law will make it easier to carry out cross-border trials and therefore to conduct research into rare diseases, as with rare illnesses there are often simply not enough cases in one country to make a trial viable. I hope that this will help lead to the development of more treatments for rare diseases and I was honoured to be named European Policy Maker of the Year this week by EURORDIS, an NGO dedicated to supporting people with rare diseases in Europe and providing information on diagnosis and treatment, as well as access to online support communities.
But despite all this, many rare diseases remain little-understood and there is still work to do to ensure treatments are available and that patients are diagnosed and have access to the right expertise. Rare diseases may affect a relatively small number of people but they have a huge impact on the lives of patients. By creating an opportunity for 28 countries to pool resources, the EU is uniquely placed to help further research into rare diseases and we must keep working to ensure that being rare, does not mean they are forgotten.
Access to medicines is increasingly under threat in EU Member States, and prices for innovative drugs are continuing to rise. Most recently, a breakthrough in Hepatitis C treatment, Sofosbuvir, has been priced at £33,000 for a 12 week course in the UK – a huge cost to the NHS that risks affecting access to the drug.
This situation is considered such a serious threat to access to medicines in the EU that Doctors of the World, a French charity, has filed a challenge to the patent that gives the pharmaceutical company a monopoly on selling the drug.
High prices are the biggest barrier to access to medicines in the EU. Pharmaceutical companies claim that countries are charged for medicines based on their ability to pay, but a study by Doctors without Borders found that some developing countries, like Morocco, are paying more for lifesaving vaccines than wealthier countries like France.
Pharmaceutical companies also say they charge high prices to pay for future research and drug development, but it is impossible to know if this is the case because of the secrecy surrounding medicine pricing.
Until there is more transparency about the funding required for research and development, it is extremely difficult to have an honest discussion about fair medicine prices. But if a price is so high that it prevents people from accessing treatment, we have to question the current system.
More recently, austerity measures have added to concerns about access to medicines in the EU. Particularly worrying is the slashing of public funds available to our NHS in the UK, meaning that patients can’t always access the medicine they desperately need. Thousands of cancer patients have been denied life-saving treatment from the current Cancer Drugs Fund, with several drugs now unavailable. I’m proud to say that a Labour government would use £50m from the pharmaceutical industry rebate to increase the fund, as well as making funding available for surgery and other treatments. This would ensure that patients have access to life saving medicines that are usually unaffordable for many health systems.
I was pleased to hear the new Commission acknowledge this month that medicines are a special case and not just a good like any other. However, we need more than just acknowledgements, we need action.
Although healthcare is a national issue, and the responsibility of the national government, the European Commission could do more to facilitate access to medicines. Most importantly, we need far more pricing transparency for medicines in the EU, and cooperation between Member States that would give us a stronger negotiating position on the price of new medicines.
Encouraging the production of generic medicines would also be an effective way to increase accessibility. Generic medicines are non-branded, which means that they are a copy of an authorised drug made after the original patent expires, and they can cost up to 90% less. An increase in the production of generic medicines could lead to really significant price reductions for EU Member States.
This is a crucial time for healthcare in the EU, and we need to fight on behalf of patients for their right to access affordable medicines. A strong response from the EU is needed now more than ever. As Chair of the Access to Medicines working group in the European Parliament, I look forward to continuing the fight for access to medicines both globally and at European level.
A Labour MEP has won an award for her work to help improve the lives of people with rare diseases in Europe.
Last night, Glenis Willmott MEP, Labour’s European spokesperson on health, was presented with the Policy Maker of the Year 2015 Award by the European Organisation for Rare Diseases (EURORDIS) following her work on new European legislation on clinical trials and the EU’s Health Programme 2014-20.
Mrs Willmott said:
“An estimated 30 million people in Europe are living with a rare disease but lack of expertise can often delay diagnosis and therefore prevent people receiving the right treatment. The EU’s Health Programme has a budget of €449.4 million (£329.2m) and will help people with a rare disease in one country to see a leading expert in another EU country.
“I also led the European Parliament’s work on the new Clinical Trials Regulation, which will encourage research into rare diseases by making it easier to carry out cross-border trials. This is particularly important for rare diseases as there are often not enough cases in one country to make a trial viable.
“I’m very proud that the work I’ve done in Europe will help to improve the lives of people living with a rare disease and I’m honoured to be receiving this award from EURORDIS.”
Flaminia Macchia, public affairs director of the European Organisation for Rare Diseases (EURORDIS), said:
“The EU’s Health Programme and the Clinical Trials Regulation have a tremendous impact on the lives of people living with a rare disease in Europe and demonstrate Mrs Willmott’s commitment to supporting the lives of people living with a rare disease.”
Today’s release from the Office of National Statistics (ONS) shows that zero-hour contracts are on the rise. There are now 1.8 million of these contracts in existence in the UK.
Glenis Willmott, Labour MEP for the East Midlands said:
“Exploitative zero-hour contracts have no place in today’s society. They prevent workers from being able to get a mortgage and can even result in individuals being unable to pay their rent. I have raised this issue with the European Commission as I would like to see workers across the EU provided with good quality, secure jobs, as opposed to a job at ‘any cost’.”
ONS figures show that the number of people who have a zero-hour contract as their main job has increased by 20%. The analysis found that women were more likely to be on zero-hours contracts, and that those under 25 years old were more likely to be affected.
Employees on a zero-hour contract earn on average £300 a week less than staff on permanent contracts. Research has also found that two in five zero-hours workers are paid less than £111 a week and do not qualify for statutory sick pay.
Glenis Willmott MEP added:
“Zero-hour contracts are rife in sectors like social care, a sector that in the East Midlands has already been highlighted as not always paying their employees the national minimum wage. These employees perform an extremely important role and should be paid at least the minimum wage.
“The Labour Party recently announced their Better Plan for Britain’s Prosperity. This would ban exploitative zero-hours contracts and would give employees who consistently work regular hours the right to a fixed-hours contract.
“We need to get Britain back to work and ensure that people are offered good quality secure jobs. The current Government is letting the UK workforce down and the people of the East Midlands can make their feelings clear come 7 May 2015.”