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European Alliance for Personalised Medicine

EAPM: Long time, no see… The journey through a diagnosis

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Here at the European Alliance for Personalised Medicine (EAPM) we often flag up the issues of a lack of early diagnosis and equitable treatment opportunities for many patients across the EU. These are patients suffering from any number of different diseases. Obviously, those dealing with various cancers form one of the biggest groups falling into this category, and this is not just when it comes to rare cancers - which is an area in which you might reasonably expect more difficulties. Not enough early diagnosis (often through a lack of screening programmes and guidelines) and a lack of access to the best treatments available in a timely and affordable fashion are issues that have long been with us. But the situation just got markedly worse due to the COVID-19 pandemic, writes EAPM Executive Director Denis Horgan.

Here, we talk to a 58-year-old man who has been diagnosed with tongue and jaw cancer and who is about to undergo treatment. The diagnosis, and then the waiting for a treatment start date, made for a long haul. Denis Horgan is the interviewer. Let’s call our patient ‘Peter X’.

DH: Peter, it’s been reported across various countries that the novel coronavirus situation has had a negative impact on other equally important diseases. Can you shed some light on that, please?

PX: OK, well, many countries have seen a drop-off in people actually making it to very important appointments due to the constraints currently being placed on much of society and, as tends to happen, priorities for citizens change what can look like illogically. Many people seem to think that they shouldn’t be taking up the time of any healthcare workers. They need treatment too, but they “don’t want to be any trouble”.

Meanwhile, some areas have actually suspended chemotherapy treatment altogether on at least a temporary basis for the same reasons, leaving patients with no choice anyway. That’s not the case where I am, as it turns out.

The simple fact is that untreated cancer patients run just as high a risk of dying as vulnerable people catching the Covid-19 virus. It goes beyond cancer to other afflictions, of course, but it’s a good example.

DH: To the nitty gritty… In your case, how long did diagnosis take?

PX: A lot longer than I would have thought if you’d asked me at the start but, exact details aside, my story is, apparently, not so unusual.

It began with my suffering from an earache at the same time as a slightly wobbly tooth. Same side of the face, so every expert down the pub said that they were probably connected and, for once in such circumstances, they were probably right!

So, after trying some earwax remover from the pharmacist - didn’t work - I eventually went to the hospital to have my ears syringed. Two for the price of one! They definitely needed it but it made no difference to the pain.

Next up was a trip to the dentist and we decided, what the hell, and took the tooth out. After a while, and reluctantly prescribed antibiotics from the dentist, it became clear that the cavity left by the tooth wasn’t healing properly. Also, the pain in the ear was still there, so the next stop was the ‘ear, nose and throat’ department of the hospital.

At that point I was told to undergo a couple of scans, one radioactive, and was a few days later referred to a hospital in another city for a biopsy, on the basis that if it turned out to be cancer I would have to be treated there anyway. This was a three-hour trip.

DH: What was the overall time period at this point?

PX: Several weeks, all spent taking various painkillers, which I usually avoid.

DH: So what happened next?

PH: Well, somewhat despondently, and with a friend in tow, I trooped off to a hotel in the city in question and underwent a tongue and jaw biopsy at the relevant hospital. I won’t go into the details, but I do not recommend a tongue biopsy - it was painful and uncomfortable. Not nice at all.

Then, after what was effectively a minor operation, I was advised not to talk for some time while my tongue healed, which many found amusing, of course. Always look on the bright side…

Then, I had to wait for three weeks for the results. Eventually I got the call and went back, on the coach for three-plus hours and to the hotel, to the city hospital. To be told, as I expected by then, that it was cancer.

The talk at that time was of an operation to remove part of my tongue and replace it with a pectoral muscle and to do the same with part of my jaw, replacing that from a rather different part of my anatomy.

But first I would have to have an all-over scan - CAT? - but they couldn’t fit me in for one month. So here am I knowing I have cancer, they know i have cancer, all my friends know I have cancer, and now I have to wait for a month to see where else it may or may not be before they decide on the final treatment.

DH: I can only imagine your frustration.

PX: Yes, and by this time I was on even stronger drugs which interfered with my sleep and also caused constipation. Happy days, not.

Finally, I went back to the hospital for the scan and it was three more weeks until I was called back for the results. At that point, one of the consultants (I’d seen several by then) told me I had to visit various other specialists prior to a final, final, final decision on how to move forward and, given how far away I lived, it made sense to arrange all these quick consultations for one day. That turned out to be possible - but only by waiting another three weeks.

In the meantime, the cancer was certainly not going away, was it? Quite the opposite. And I was getting beyond frustration into anger territory at this point. And almost some tears on a few occasions.

Anyway…Eventually these appointments take place and I stay in a hotel for three nights and finally see the surgeon who, to my disbelief after all this time mucking about, tells me that it’s too late to operate and that I have to skip that bit and go straight to chemo and radiotherapy.

I had all on not to blow my top there and then. There I sit with an advancing cancer that everyone knows about having been shoved from pillar to post to be told it’s now too late for Plan A and we have to jump to Plan B.

DH: Alright. What next?

PX: Cue yet another consultation, then another wait and round-trip and a measurement for a ‘mask’ to keep my head still during radiotherapy. Followed by a start date two weeks down the line. By which point I would have had to move to the city - at huge expense - and live for two months in a hotel in a place where I know no-one while undergoing a horrible combination of chemo and radio.

And that’s where we are. Treatment starts tomorrow, Denis. I’m lonely and frightened, and under great financial stress, trying not to think about the fact that if this had all been done months ago, it would have been done-and-dusted for better or for worse, and I would be back at home right now rather than living out of a suitcase in a hotel in a strange city.

Of course, this would all have been bad enough, anyway. But the Covid-19 outbreak certainly had an impact on staff availability. On the big plus side, at least I’m lucky that they haven’t stopped chemo where I am.

This is literally a matter of life or death for me, as it is for the worst affected Covid patients, although in a different context, of course.

DH: So how do you feel about all this?

PX: Obviously frustrated, a little angry, frightened because it’s going to be dreadful in every respect, and knowing that - according to my consultant - some days I may feel so ill that they’ll keep me in hospital overnight.

Meantime, I’ve already lost loads of weight, am on liquid-based food supplements, as it hurts to eat most solids, and I can’t have a drink for the next two months if ever again!

Thinking positively, now we’re finally on track, I might come out of it cancer free. One can but hope. I’m trying to be positive.

What I will say finally is that, while all of this very serious COVID-19 situation is ongoing, please do not suddenly think that other seriously ill patients can be pushed to one side.

DH: Thank you, Peter.

Very sadly, our interviewee passed away from cancer in July 2020 – we would have so liked him to be able to attend our next conference, EAPM’s 9th EU Presidency conference, under the auspices of the Portuguese EU Presidency. The conference, which takes place on 8 March from 9-16h, is entitled ‘Forward together with innovation: The why, what and how of tackling the implementation gap for health care in the EU Portugese Presidency’. Please find the link to register here and the agenda here.

European Alliance for Personalised Medicine

EAPM: The need for change – EU to the fore on cancer, data governance and HTA

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Good afternoon, health colleagues, and welcome to the second European Alliance for Personalised Medicine (EAPM) update of the week, in which we discuss the range of public health scenarios now.  The dramatic improvement in the health of the citizens of Europe over the last two centuries has transformed the continent and the lives of the people living in it. But is Europe able to seize the new benefits that science, technology and forward-thinking public-policy decisions could confer on current and future generations of Europeans writes EAPM Executive Director Dr. Denis Horgan or is it losing the will and capacity to grasp the fruits of progress?

The answer: Yes, EU policymakers makes strides forward with health – EAPM engages

As reflected in COVID 19, its science and technology are certainly not.  Health-care professionals still have a powerful sense of dedication. And research and industry function at an unprecedentedly high rhythm. What is missing from the picture is an overarching vision of how to – or even whether to - exploit all that potential.

The key issues that EAPM has engaged with this week  and in the last months were on the issues of health data, HTA and cancer, which builds on our conference of 1 July, and the EU Health Data Space which EAPM has championed over recent years. 

EAPM has been actively engaging with a number of European politicians from across the political spectrum in the European Parliament, such as from the Health Committee and the ITRE committee, regarding cancer and the EU Health Data space dossiers.

As recently as this afternoon (16 July) hence the later update, sixty-six MEPs voted in favor with six abstaining to adopt the draft report on the EU data bill. They also received a mandate to negotiate with the Council.   

This is the first bill put forward as part of the EU’s data strategy aims to foster the exchange of data in the bloc and beyond.   According to the rapporteur EPP MEP Angelika Niebler a statement.“The vision is a ‘Schengen for data’, in which data can circulate without barriers and in accordance with European rules.”

More on this below…. 

Parliament’s health committee votes through health threats report 

The European Parliament’s Committee on the Environment, Public Health and Food Safety (ENVI) has backed a draft report on how to tackle cross-border health threats. 

The vote passed with 67 in favour, 10 against and one abstention. 

The report, authored by French MEP Véronique Trillet-Lenoir of Renew Europe, sets out the Parliament’s position in negotiations regarding the Commission’s proposal to strengthen Brussels’ health emergency response powers, one of the three “health union” legislative proposals. 

It still needs to be ratified in plenary. Trilogues are expected to begin in the fall. The proposal would see the creation of a EU health crisis and pandemic preparedness plan and calls for recommendations for national plans that EU agencies would review. It would also strengthen the monitoring of potential disease threats through improved information gathering and create rules for triggering responses when an EU emergency situation is called. 

MEPs back ‘ambitious’ EU Cancer Plan 

To "support, co-ordinate and complement member states’ efforts to reduce the suffering caused by cancer", that is the hope expressed by the EU Cancer Plan, and that decisive action at EU level — the first of its kind since the early 1990s — can help head off a projected 24% increase in cancer deaths by 2035. 

Such a hike would make the disease the leading killer in the EU. 

The broad strokes of the plan are in line with a previous draft dating back to December which EAPM engaged with then also.   The importance of personalized medicine has been upgraded in the final text, with nearly two pages dedicated to the topic. The plan proposes a programme in 2023, funded through Horizon Europe, to identify "priorities for research and education in personalized medicine". 

Health Technology Assessment deal at last...

After several years, Europe has reached a landmark deal to carry out health technology assessments (HTA) on new products for the bloc. HTA is a research-based tool to support decision-making in healthcare. It works by assessing the added value of new or existing health technologies – medicines, medical devices and diagnostic tools, surgical procedures, as well as measures for disease prevention, diagnosis or treatment – when compared to other health technologies. According to the proposed legislation, member states will co-operate at EU level on joint clinical assessments and joint scientific consultations on health technologies. 

The new legislation calls for the creation of a ‘Member State Co-ordination Group’, with each country represented. The collaborative undertaking will provide valuable scientific information to national health authorities when it comes to decisions about pricing and reimbursement for a health technology, the Council indicated. 

Data regulation moving forward - back to a crucial issue of public trust

There are some signs that the COVID-19 pandemic has prompted people to rethink their attitudes toward sharing personal data when it is used to manage public health and provide essential services and infrastructure. Greater willingness to provide personal data could open up new opportunities and political will to accelerate the implementation of the smart city—an urban planning strategy that harnesses technology, artificial intelligence and data analytics to run cities more efficiently and sustainably.

But although the outlook around personal data may have shifted, there is still a long way to go to secure universal buy-in from all citizens, which will be needed for the potential of smart cities to be fully realized. 

Many remain reticent about making their personal details available for analysis. In a recent in-depth, global survey by White & Case of more than 50 senior professionals and investors working in the smart city space, opinion was split almost down the middle. 

Some 40% of respondents said they are comfortable with sharing/allowing access to personal data for the purposes of developing/improving smart city technology, with 40% saying they are not comfortable doing so and 20% undecided. 

The survey also found that 42% said they would be willing to accept reduced privacy for better services, versus a third who said they wouldn't, with 24 percent undecided. There are signs that the pandemic has prompted people to rethink their attitudes toward sharing personal data. 

Securing access to large volumes of personal data from city inhabitants, and having a clear framework in place for its use sits at the center of many smart city projects. Smart cities rely on the collection and analysis of mass data from citizens, their devices, urban sensors and utilities that can be used to manage traffic, transport networks, and power supply and public services more efficiently. 

Stronger cross-border health care

European MEPs on the parliamentary health committee adopted a set of improved rules to allow the bloc to react more quickly and effectively to cross-border health threats on Tuesday (13 July). 

That includes the EU reducing its dependency on the World Health Organization when declaring a pandemic. “We want to be able to declare our own health emergencies, if needed,” said Esther de Lange MEP, vice-chairwoman of the EPP Group responsible for Economy and Environment and this dossier. “If Europe needs to act, we must not delay measures and wait for the WHO.” Other measures adopted by ENVI included making cross-border planning and staff training mandatory; simplifying joint procurement of health products; and guaranteeing continuous health care for other diseases. 

Bad news at the end: ECDC - New coronavirus cases soar in the EU

The European Centre for Disease Prevention and Control (ECDC) urges EU citizens to get vaccinated and to adhere to the recommended number of doses. This is particularly important taking into account the spread of the Delta variant of SARS-CoV-2, the need to protect citizens, especially those at risk of severe COVID-19, and the desire to open up our societies and relax restrictions. 

European vacationers had hoped this year’s northern hemisphere summer would see unhindered movement and be largely free of travel restrictions, but countries across southern Europe are now scrambling to re-impose pandemic curbs amid alarm at rising cases of the delta variant, a highly contagious coronavirus strain first detected in India. Spain, Portugal, Greece, Cyprus and Malta were among the first countries to start reopening earlier this year but now they are tightening entry restrictions on vacationers who have not received both jabs. 

Abruptly announced restrictions are also adding to the woes to the continent’s airline, tourist and hospitality industries. They had been harboring hopes of a strong business rebound the next couple of months, enough to start repairing the severe economic damage the pandemic has inflicted on them.  

That is all from EAPM for now – don’t forget to check out our report on our latest virtual conference available here, and make sure you stay safe and well and have an excellent weekend, see you next week.

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European Alliance for Personalised Medicine

EU Beating Cancer project takes centre stage with draft report

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Good morning and welcome, health colleagues, to the second European Alliance for Personalised Medicine (EAPM) update of the week – as it stands, more than 150 people have now registered for our upcoming EAPM Slovenian EU Presidency conference on 1 July, so now is the time to join them and book your place before it’s too late, and we also have an update on the European Parliament’s draft report on strengthening Europe in the fight against cancer, writes EAPM Executive Director Dr. Denis Horgan. 

EAPM conference approaches - a reminder yet again...

The EAPM conference will act as a bridging event between the EU Presidencies of Portugal and Slovenia. The conference is divided into sessions which cover the follows areas: Session 1: Generating alignment in the regulation of Personalized Medicine: RWE and Citizen Trus; Session 2: Beating Prostate Cancer and Lung Cancer - The Role of the EU Beating Cancer: Updating EU Council Conclusions on Screening Session 3: Health Literacy - Understanding Ownership and Privacy of Genetic Data and finally not least, Session 4: Securing patient Access to Advanced Molecular Diagnostics.

Each session will comprise panel discussions as well as Q&A sessions to allow the best possible involvement of all participants, so now is the time to register here, and download your agenda here.

Battling cancer – Parliament’s key draft report

As mentioned in previous updates, the European Parliament has set up a special committee on beating cancer.  It has published its first draft report on the EU Beating Cancer Plan on the last day, which has included a number of items which the EAPM has advocated for in the last months representing key issues representing  the multi-stakeholder nature of its membership. 

Subdivided into numerous articles, article 66 in the report is of particular attention to EAPM members, saying as it does that huge advances in biology have revealed that cancer is an umbrella term for more than 200 diseases, and that precision or personalised medicine can be made available through the drug targeting of various mutations. 

The report also considers that precision or personalised medicine, consisting of a treatment choice based on individual tumour biomarkers, is a promising way to improve cancer treatment, and encourages member states to promote the implementation of regional molecular genetics platforms and facilitate equal and rapid access to personalised treatment for patients.   

In addition, article 48 in the draft report calls on the Commission to promote, and on member states to strengthen, the role of general practitioners, paediatricians and primary care professionals, given their importance in patient referral to diagnostic tests and oncology specialists, as well as during cancertreatment and follow-up care; calls for the development of multidisciplinary decision-making in the framework of dedicated concertation meetings bringing together various cancer specialists. 

According to article 61, the provisional agreement on the Health Technology Assessment (HTA) Regulation reached by the European Parliament and the Council on 22 June 2021 is welcomed, to harmonize access to innovative cancer diagnosis and treatments.

Perhaps most importantly, article 87 sees an urgent need for a European charter of the rights of cancer patients; calls for this charter to define the rights of cancer patients at every stage of their care pathway, i.e. access to prevention, initial diagnosis and throughout their treatment, and for it to apply equally to all EU citizens, regardless of the country or region in which they live.

In addition, article 105 looks to the ‘Cancer Diagnostic and Treatment for All’ flagship and puts a spotlight on the need for the use of the ‘next generation sequencing’ technology for quick and efficient genetic profiles of tumour cells, allowing researchers and clinicians to share cancer profiles and apply the same or similar diagnostic and therapeutic approaches to patients with comparable cancer profiles.

EAPM looks forward with enthusiasm to all forward progress being made in the fight against cancer.  In this context, EAPM is working on two publications with its experts on NGS and RWE which will  provide additional input/guidance to the European politicians which EAPM is working with. 

HTA political agreement

The Commission welcomes the political agreement on the Health Technology Assessment (HTA) Regulation reached by the European Parliament and the Council on 23 June. The Regulation will improve the availability of innovative health technologies such as innovative medicines and certain medical devices for EU patients, ensure efficient use of resources and strengthen the quality of HTA across the EU. Examples of health technologies include medicinal products, medical equipment and diagnostics. It will also facilitate business predictability, reduce duplication of efforts for HTA bodies and industry and ensure the long-term sustainability of EU HTA co-operation.

Welcoming the agreement, Commissioner for Health and Food Safety Stella Kyriakides made the following statement: “I am very pleased that the European Parliament and the Council have reached a long-awaited political agreement on the Health Technology AssessmentRegulation. The Regulation will be a significant step forward to enable joint scientific assessments of promising treatments and medical devices at EU level.”

Progress on vaccinations welcomed, but further effort urged

The European Council welcomes the good progress on vaccination and the overall improvement in the epidemiological situation, while stressing the need to continue vaccination efforts and to be vigilant and co-ordinated with regard to developments, particularly the emergence and spread of variants.

According to the draft European Council conclusions for the June 24-25 meeting, the Council stated that it “reaffirms the EU’s commitment to international solidarity in response to the pandemic”.

“All producing countries and manufacturers should actively contribute to efforts to increase worldwide supply of COVID-19 vaccines, raw material, treatments and therapeutics, and coordinate action in case of bottlenecks in supply and distribution,” the draft text declares.

The conclusions also reference recent agreements on travel within the EU, stating that member countries would apply these measures “in a manner that ensures the full return to free movement as soon as the public health situation allows.” The Council also plans to welcome the decision to set up a special session for the World Health Assembly to discuss a pandemic treaty, with the EU saying that it will continue to work toward a goal of a treaty.

WHO, WIPO and the WTO agree on intensified co-operation to tackle COVID-19 pandemic 

On 15 June, the directors general of WHO, WIPO and the WTO met in a spirit of co-operation and solidarity to map out further collaboration to tackle the COVID-19 pandemic and the pressing global challenges at the intersection of public health, intellectual property and trade.  Acutely conscious of the shared responsibility to communities across the world as they confront a health crisis of unprecedented severity and scale, the organizations pledged to bring the full extent of the expertise and resources of the respective institutions to bear in ending the COVID-19 pandemic and improving the health and well-being of all people, everywhere around the globe.  

Commitment to universal, equitable access to COVID-19 vaccines, therapeutics, diagnostics, and other health technologies was underscored – a commitment anchored in the understanding that this is an urgent moral imperative in need of immediate practical action.  In this spirit, there was an agreement to build further on the long-standing commitment to WHO-WIPO-WTO Trilateral Cooperation that aims to support and assist all countries as they seek to assess and implement sustainable and integrated solutions to public health challenges.  

Within this existing cooperative framework, it was agreed to enhance and focus our support in the context of the pandemic through two specific initiatives - the three agencies will collaborate on the organization of practical, capacity-building workshops to enhance the flow of updated information on current developments in the pandemic and responses to achieve equitable access to COVID-19 health technologies. The aim of these workshops is to strengthen the capacity of policymakers and experts in member governments to address the pandemic accordingly.  The first workshop in the series will be a workshop on technology transfer and licensing, scheduled for September. 

Long COVID concerns

More than 2 million adults in England have experienced coronavirus symptoms lasting over 12 weeks, such as respiratory problems and fatigue, government data suggests. It is double the previous estimate for long Covid. The research by the React-2 study, which has not yet been peer-reviewed, found that 37.7% of those who had symptomatic Covid experienced at least one symptom lasting 12 weeks or more, while 14.8% had three or more persistent symptoms. “The scale of the problem is quite alarming,” said Professor Kevin McConway, emeritus professor of applied statistics at the Open University. It comes as more than 16,000 new confirmed Covid cases were reported in the UK on Wednesday (23 June), the highest daily figure since early February. The newest figures showed another 19 people had died within 28 days of testing positive for Covid-19, bringing the UK total to 128,027. While death figures remain relatively low, the sharp rise in reported cases would appear to make it less likely that ministers will scrap most remaining Covid restrictions before the current four-week delay ends on 19 July. 

Switzerland to re-open 

While countries such as the UK delay their planned lifting of restrictions (as it stands, until 19 July in the case of the UK), Switzerland has announced an even more wide-ranging lifting of restrictions than previously planned. Citizens will no longer be required to work from home; they won’t have to wear masks or social distance at cultural and sporting events; and mass events can go ahead without restrictions on numbers or the need for masks if there’s a requirement for coronavirus certificates.

And that is all from EAPM for this week – have a lovely weekend, stay safe and well, and don’t forget to register here, and download your agenda here, for the EAPM EU Presidency conference on 1 July.

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EAPM: HTA delays, EMA…and beating cancer

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Greetings, colleagues, and here’s the latest European Alliance for Personalised Medicine (EAPM) update as we approach what we hope will be a normal ‘summer’. It’s all just a bit different and better this year, of course, with the vaccine rates picking up. While a lot of countries are winding-back their lockdown processes slowly but surely, it remains to be seen how many of us will have the oppurtunity to take a holiday abroad - wherever that may be - amid continuing fears in respect of COVID-19 variants. Some daring souls have made their reservation, of course, but  ‘staycations’ are in some cautious travellers likely to be the order of the day this time around again, with many deciding to holiday in their own countries. In the meantime, don’t forget that EAPM has a virtual conference coming up very soon - in less than two weeks, in fact, on Thursday, 1 July, writes EAPM Executive Director Dr. Denis Horgan. 

Entitled Bridging Conference: Innovation, Public Trust and Evidence: Generating Alignment to facilitate personalized Innovation in Health Care Systems, the conference acts as a bridging event between the EU Presidencies of Portugal and Slovenia.

Alongside our many great speakers, attendees will be drawn from leading experts in the personalised medicine arena – including patients, payers, health-care professionals, plus industry, science, academia and the research field.

Each session will comprise panel discussions as well as Q&A sessions to allow the best possible involvement of all participants, so now is the time to register here, and download your agenda here.

HTA deal

On Wednesday, (16 June) EU deputy ambassadors signed off on the Portuguese Council presidency’s latest health technology assessment (HTA) proposal so it can move to trilogues on 21 June. Countries are willing to shorten the date of application and compromise on the voting system, but are not eager to budge on Article 8 — a debate that could delay the deal. In the event there are divergent opinions, EU countries agreed that any country must explain the scientific basis for contrarian views. 

EMA reform proposal – EU common position agreed

EU health ministers have met for the last time under Portugal’s presidency of the Council of the EU to agree on that body’s position for negotiations with the European Parliament on new rules to strengthen the role of the European Medicines Agency (EMA).

At a meeting in Luxembourg on Tuesday (15 June) chaired by Portuguese Health Minister Marta Temido, the 27 governments agreed on their position for the upcoming negotiations with the Parliament.

They had already agreed on some changes to the initial proposal presented by the European Commission in November on the revision of rules to strengthen the mandate of the EMA, as part of a broader package on the so-called European Health Union.

One of the main objectives of the new draft EMA rules is to better enable it to monitor and mitigate potential and actual shortages of medicines and medical devices that are considered critical to respond to public health emergencies such as the COVID-19 pandemic, which revealed shortcomings in this regard.

The proposal also aims to “ensure the timely development of high-quality, safe and efficacious medicines, with particular emphasis on responding to public health emergencies” and to “provide a framework for the operation of expert panels that assess high-risk medical devices and provide essential advice on crisis preparedness and management”.

Life after cancer with BECA 

The Parliament’s special committee for beating cancer (BECA) held a hearing on national cancer control programmes on Wednesday to hear how different countries were tackling the challenge. 

Despite advances in cancer diagnoses and effective therapies which have helped to increase survival rates, cancer survivors continue to experience significant challenges. According to Europe’s Beating Cancer Plan, cancer should be tackled across the entire disease pathway, from prevention to improving the quality of life of cancer patients and survivors. In fact, ensuring that survivors “live long, fulfilling lives, free from discrimination and unfair obstacles” is of utmost importance. 

Life after cancer is multifaceted yet the focus of this online debate is on the implementation of policies addressing the specific challenge of returning to work for cancer survivors. 

Northern Ireland cross-border health care directive reinstated

Health Minister Robin Swann is to reinstate the cross-border health care directive to the Republic of Ireland. The directive is a temporary measure for a 12-month period to help reduce Northern Ireland waiting lists and will be subject to strict criteria. 

The minister said: “A key principle of our health service is that access to services is based on clinical need, not on an individual’s ability to pay. However we are in exceptional times and we must look at every option to tackle the waiting lists in Northern Ireland. 

“Reinstating a limited version of the cross-border health-care directive to Ireland will not have a dramatic impact on the overall waiting lists, but it will provide an opportunity for some to have their treatment much earlier. 

“We need an urgent and collective approach across government to tackle this issue and deliver a health service that is fit for the 21st century.” 

The Republic of Ireland Reimbursement Scheme sets out a framework, based on the Cross-Border Health Care Directive that will allow patients to seek and pay for treatment in the private sector in Ireland and have the costs reimbursed by the Health and Social Care Board. Costs will be reimbursed up to the cost of the treatment in Health and Social Care in Northern Ireland. 

Survey reveals attitudes of public toward rare diseases and medicines access 

The UK BioIndustry Association (BIA) has published a report presenting the findings of a survey on the public attitudes toward equal access to medicines for those living with rare diseases, it was announced in a 17 June press release. 

Results of the survey, which was conducted by YouGov, have shown that the public strongly believe that patients living with rare diseases should have equal access to medicines via the National Health Service (NHS) as those living with more common conditions. 

Additionally, the majority of survey respondents agreed that patients with rare diseases should have access to medicines assured by the NHS on a basis of clinical need, irrespective of cost. 

The survey findings follow recent assertions made by the National Institute for Health and Care Excellence (NICE), specifying that there isn’t an appetite among the general public for specific measures to tackle rare disease. BIA’s report, Public Attitudes to Rare Diseases: 

The Case for Equal Access, recommends that NICE revises its position on rare conditions and medicines access, and that the body consider the value of a rarity modifier when performing health technology assessments. 

This survey demonstrates that there is broad public support for measures to ensure access to medicines for rare diseases based on clinical need even if that would entail higher costs..

That is all from EAPM for this week – do enjoy your weekend, stay safe and well, and don’t forget to register for the EAPM Slovenian EU Presidency conference on 1 July here, and download your agenda here.

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