Health data – a matter of safety, robustness and advancement
In healthcare we constantly need to make
accurate decisions based on efficient and correct assessments of not just the
short- but also long-term value and performance of new therapies and drugs for
patients. We need robust and especially complete data from patients. This
however poses challenges in terms of data protection, regulatory approvals to
meet comparative effectiveness and value in terms of health outcomes. Experts
and advocates discussed the above matters during the lunch session on Friday, 4th
October 2019, titled: Making real world
data real – new methods for EU health technology assessments.
have all heard the words chronic diseases and non-communicable diseases before.
But have we ever considered defining obesity as one? In this afternoon’s
session, Jacqueline Bowman-Busato, the policy lead of the European Association
for the Study of Obesity, asked a controversial question: What would happen if
Europe approached obesity like other chronic disease epidemic and focused on
addressing the biological causes in approaches to policy along the obesity
Improving Healthcare access for marginalised people (B1)
It was just after sunrise when I walked past these two
containers with the beautiful sign: “Nobody Left Outside”. It was 7 am and I
was on my way to one of the most inspiring and innovative workshop that I have
attended in a long time.
Already over 70 years ago, in the 1946 Constitution of
the World health Organization (WHO) it was articulated the right to Health as a
fundamental part of human rights:
“The enjoyment of the highest
attainable standard of health is one of the fundamental rights of every human
being without distinction of race, religion, political belief, economic or
Unfortunately, in the year 2019, in the European
region there are still large population groups that are left outside of the
healthcare system. Groups such as homeless, sex workers, migrants, LGBTI
people, people who use drugs, prisoners are often stigmatised and marginalised
and are disconnected from the society. Thus, the event organized today by Merck
& Co. (MSD) and by Nobody Left Outside (NLO) was an unique opportunity to
bring to light this huge public health challenge and highlight the need for
improving access and equity.
“The event comprised a breakfast workshop and an incredibly inspiring exhibition. The workshop was a refreshing and stimulating event. It started with a focus on the opinion of some of the most underserved communities. Dinah Bons, Director of Transgender Europe and representing the International Committee on the rights of sex workers in Europe (ICRSE), highlighted that the groups “left behind” are often groups living in Poverty that we may not encounter in our day-to-day life. They usually have different needs and they are often more affected by complex health issues such as HIV or Hepatitis. “
Dinah Bons (from Transgender Europe) discussing during the Nobody Left Behind Workshop.
Her intervention was followed by Mario Cascio from
European AIDS Treatment Group (EATG) who emphasised the importance of community
programmes for prisoners as they are often marginalised from the healthcare
system and at higher risk of suffering from infectious diseases.
One of the most marginalised communities across Europe
are migrants. As an epidemiologist working in Malta, I often witness how asylum
seekers and migrants tend to struggle to access the healthcare system. Thus,
hearing the work of Denis Onyango from the Africa Advocacy Foundation (AAF) was
refreshing and encouraging. It was particularly inspirational to hear Elena Val
(from the International Organization for Migration, IOM) who recognised that
entering a new health system is challenging for all migrants, but refugees and
asylum seekers often face additional difficulties, such as stigma, fears of
deportation, changes in legislation and limited rights to health access.
The NLO initiative has issued a Service Design
Checklist intended to be used by service providers and policy makers to design
and deliver targeted health and social services accessible to people in
marginalized communities ant risk of vulnerability. They have also recently
issued a call to action statement and further information can be found here.
The second part of this event was a beautiful art
exhibition located just in front of the main conference center. In these
containers, photographs and audio recordings with stories from different
individuals are shown highlighting their struggles.
The NLO Exhibition
Vytenis Andriukaitis, EU Commisionair for Health and Food Safety visiting
This type of innovative events are a great opportunity
to strengthen the collaborations between all the groups involved in providing health for
undeserved communities and for raising
awareness among health professionals while creating positive relationships and
reducing stigma. There is still a large challenge ahead; Nevertheless, we ought
to continue our efforts to reduce these barriers. We ought to continue working
together and innovative initiatives such as Nobody Left Outside (NLO) which are
an inspiring projects that are giving a voice to this communities and
contributing significantly to make Europe a better place for all.
This Blog was written by the Young Gasteiner Raquel Medialdea-Carrera
Day 2 of the #EHFG2019 concluded with a session about the current hype in cell therapy – CAR-Ts! Many aspects were discussed from R&D, manufacturing, logistics, infrastructure, delivery, patient access and reimbursement schemes. While all speakers, ranging from oncologists, patients, industry and payers agreed how fantastic this hope-bringing innovation is, one important aspect of the debate was not given the attention it deserves – fair pricing of such innovative cancer treatments.
There is no doubt CAR T-cells provide hope to the hopeless with no alternative options. However, the current list price for Novartis’ Kymriah is €320,000 (excl. VAT) per patient. Kymriah has been on the European market for about a year and it seems to be about 50% successful in the short-term. German payers recently noted they are paying 5% of their drug budget for 0.007% of the population. This excludes the investments that need to be made to ensure quality of the medical facilities, properly trained work force and addressing serious side-effects caused by the drug’s toxicity.
So, why are CAR-Ts so expensive? Everyone knows prices are not always based on the spending for research and development. After all, CAR-T research was heavily funded by public investment. Is it the cost of manufacturing? Hardly, academics can now cook their own CAR-Ts in the labs. Is it value? Perhaps. No one can argue with that, especially when we do not know what is the value of life, especially for paediatric patients. The problem with current pricing models is that they are based on speculations of how much is the system willing to pay.
So, what would be a fair price for CAR-Ts? There is no universal definition of a fair price understood by all stakeholders, but everyone agrees that fair price might not necessarily be the cheapest price as it needs to generate enough revenue to stimulate research. Currently, the average return on investment for cancer medicines is over 14 USD on each invested buck. Maybe this fair price equation should contain an ethical aspect too.
This Blog was written by the Young Gasteiner Anna Prokupková
Digitalising health services: are we ensuring equity and the human touch?
The plenary started off with the opening remarks from Dr. Hans Kluge (nominee Regional Director-elect for the WHO European Region) sharing his thoughts and views on digitalisation. His remarks were echoed by the panel in the discussion that followed.
technologies are redefining public health and health services. Dr. Hans Kluge is
committed to working toward accessible and affordable digital health services
across all 53 member states within the European Region. However, he highlighted
the importance of accessible and affordable digital services for all. Are we so
enthusiastic in digitalising our health services that we fail to oversee if
services are accessible and affordable to all, thus risking to push more people
into poverty? Are we ensuring that digital health services are accessible to
all? Are we engaging civil societies and the public and are we including their
views and thoughts in the design of digital health services? Digital health
tools present new opportunities to current challenges. Nevertheless, we should
be careful that we do not get blinded by this digital transformation and forget
about the human touch.
need ethically and morally responsible policies to ensure that no one is left
behind! This requires a good governance
framework across all European member states, which is built in partnership with
patient groups, health professionals, and the general public. We need more
evidence on the safety and efficacy of digital interventions, most notably for
artificial intelligence – so that we ensure that we don’t lose the human touch.
about the last time you introduced a new intervention or service, based on
digital health. Did you get your patients’ views about this? Did you check
whether it would be accessible to all your patients? Did you ascertain that it
would not undermine their safety, privacy, security and trust? Did you make
sure that your patients are not being deprived from the human touch? If not,
think again. It doesn’t mean that digital health is not the solution, but
rather that an alternative is required.
can bring us together or break us apart. It all depends on why we choose to implement
new technology (is the decision based on our needs, our patients’ needs or
both?) and the way we design the service (ensuring an element of human touch
and making sure that the service is accessible and affordable to all).
should not steer us away from the human touch in patient/provider interactions,
but free up time and facilitate better and increased human to human interaction
in healthcare. “We must
make conscious changes for a human touch in the digital world and make sure
that no one is left behind” Dr. Hans Kluge
This Blog was written by the Young Gasteiner Joseph Grech