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A personal review of a Swedish Hepatitis patient organization “RHC”

Riksföreningen Hepatit C (RHC) is a small organization with fewer than 600 members in the whole country. There are two local organizations, in Stockholm (LHC Stockholm) and in Gothenburg (LHC Västra Götaland). There are seven members on the board of the national organization, of which three are active on a national level and one each at a local level in Stockholm and in Gothenburg. Our chairwoman, Suzanne Borén Andersson, works mostly with domestic affairs and concerns, whilst myself, Tove Frisch, works mostly on establishing international contacts and networks. In addition the organization has a very reliable accountant, Michael Mogensen.

 

Short background

When I joined the group in 2006, as a very ill patient, the main role of the RHC was to offer comfort and advice to patients about their disease, about the treatment or rather the lack of it and to try to help the individual patient as much as possible. Many social activities were arranged and many invited doctors or nurses came to our local meetings in Stockholm and Gothenburg. As there were no local similar organisations in other parts of Sweden, sometimes patients came from far and wide.

At that time it was more of a cozy gathering with coffee, cake, sandwiches, dinners, information, the mutual exchange of patient stories, advice about good and bad practices, clinics and doctors, assistance and unfortunately more often than wished, to provide support and condolences to relatives of patients who had died.

Today, owing to the number of new drugs which are available, patients are cured so our work has changed considerably.

Over the years, we have learnt much about advocacy, politics, politicians, media, best practices, policy making and health care structures in Swedish society. The RHCs still maintain close contact with patients, answer questions on the help line, organize patient gatherings but today fewer patients come and occasionally there are none. As a result of this it has become evident not only to board members, that we need to reach a broader audience e.g. both public and political. Today, the main challenge to patients is not how to survive a terrible year of aggressive therapy and frequent relapses but how to get access to all the new treatments that become available. Patients no longer feel horribly sick, no longer go through long ordeals only to relapse,time after time. They are now concerned about getting better access to drugs even when their liver condition is better than F2, irrespective of where they live in Sweden or whether they have financial resources for these new treatments. This means what they now need from an organization such as ours, is to fight for their right to be tested, scanned and treatment immediately after diagnosis.

We have to become media savvy, in getting political focus on hepatitis at both a regional and national level and bring a raised awareness within patient groups and the general population. Despite our success in 2015 in moving the limit for treatment from F3 to F2 there is still a lot to do. During the spring and summer, we toured the small country cities of Sweden and found some really worrying departures from the official Swedish guidelines that interferon or ribavirin should not be used unnecessarily.

Our goals

• New efficient treatment for all, at diagnosis and as a preventative measure.

• Primary care institutions must be better educated in testing and diagnosing patients. Combine the HIV-test with a HCV-test for all  pregnant women

• If they do not seek treatment themselves, clinics and hospitals must keep contacting diagnosed patients

• Work harder with all stakeholders to understand the whole picture of hepatitis care in Sweden

• Work hard with the industry to lower the drug prices and thereby helping more patients receive appropriate treatment

• Implement needle exchange programs in all regions of Sweden

• Maintain co-operation with other EU and non-EU countries. This is critical for research, exchange of good ideas, best practices, discussions, support and pressure groups

• Finally: all the above in order to build a Swedish NATIONAL ACTION PLAN

Closing remarks

We are now in a very active phase and both Suzanne and I are talking to politicians and hope to get the authorities to listen and soon to see the relevance of a National Action Plan, a task we have been vainly fighting for a long time. It’s fair to say we now have hope as we have drawn a lot of attention to hepatitis C this past year.

www.hepatitc.org

 

Article Info

  • Authors:

    Tove Frisch

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