In the beginning of October, EMSP was represented at the European Health Forum Gastein (EHFG), widely known as ‘Davos for Public Health’, the leading health policy conference in Europe.

Since its foundation in 1998, the conference has developed into a key annual event, bringing together, politicians, senior decision-makers, representatives of interest groups, and experts in the field of public health and healthcare.

Here are the three most interesting insights we collected from the Forum for the MS community.

Lunch workshop on biopharmaceuticals

Our Director of External Affairs, Mr. Christoph Thalheim had the opportunity to participate in discussions on the benefit and risk balance on new therapies. He addressed the urgent need to amend the data being created within the sheltered and therefore biased environment of clinical trials by additional “Real Life” data as base for health policy and healthcare decision making.

One of his practical examples demonstrating the need for a better evidence base was the report by individual patients that current drug label regulation was based on such weak and incomplete data, that some patients felt the need to fake enough relapses to become eligible for reimbursement of the most efficient therapies.

What can the Multiple Sclerosis community learn from the HIV community?

HIV advocates proved to have quite successful advocacy campaigns. First, HIV advocates achieved that their governments offer HIV treatment for free in Europe. Moreover, there are various achievements in removing barriers for accessing HIV treatment – for example, many European countries removed the barrier of viral load measure as a prerequisite for accessing HIV treatment.

The MS community can learn from the advocacy campaigns of the HIV community.

HIV care continuum is an approach developed by the HIV community, which is defined as having the following stages: diagnosis of HIV infection, linkage to care, retention in care, receipt of antiretroviral therapy, and achievement of viral suppression.

In terms of MS care, a stage approach, especially upon diagnosis, linkage to care, retention in care, and receipt of treatment and its effect monitoring might be a relevant concept to be considered.

At last, the HIV community have set up the international 90-90-90 targets, which is the following:

  • By 2020, 90% of all people living with HIV will know their HIV status.
  • By 2020, 90% of all people with diagnosed HIV infection will receive sustained antiretroviral therapy.
  • By 2020, 90% of all people receiving antiretroviral therapy will have viral suppression.

Having similar target indicators would help the MS community to strengthen its advocacy efforts.

When Epidemiology Meets Big Data

Data interoperability was newly addressed by a European Commission representative. We cannot exchange data across borders if we do not have data set standards. This is an important and reaffirming insight for EMSP, given that our MS Data Alliance project aims to tackle the challenge of data sharing by supporting the re-use and request-based pooling of data when necessary.

Meanwhile the lack of data set standards is also addressed by another main objective of MSDA, which is the implementation of a minimal data set and quality standards, approved by the European Medicine Agency (EMA), in as many MS data registries and cohorts as possible.

Can People Afford to Pay for Healthcare?

New evidence from World Health Organisation shows that when people have to pay out of pocket for health care, some of them face barriers to access and forego treatment due to the cost involved, some pay and suffer financial hardship, and some experience both unmet need and financial hardship.

Did you know that your national leaders adopted a declaration on universal health coverage, that includes the provision to ensure that no one suffers financial hardship for accessing health services? Utilise this commitment expressed by your country’s leaders to advocate on behalf of people affected by MS, so that they do not have to suffer financial burden for accessing the healthcare they need.

Fill in the MS Barometer questionnaire to develop your evidence on how people with MS suffer from financial hardship for accessing the healthcare needed.

Summaries of the sessions

Are you interested in learning more about what was said during the EHFG sessions? We got you covered. The event was attended by a group of young people who gathered all the learnings in their blog contributions available here.