Board Meetings

Annual report 2009-2010

01.09.2010
The Nordic Hemophilia Council General Meeting 2010
Helsinki, Finland, August 26th 2010.
Hilton Hotel Kalastajatorppa, room Katarina

Agenda:

1. Appointment of chairman of the meeting.
2. The report from the past year by the Executive Committee.
3. The report from the working groups.
- Andreas Hillarp on behalf of the von Willebrand working group
4. Presentation of the audited annual report from the past financial year.
- Jan Astermark

5. Discussion of incoming proposals.
6. (Appointment of the Executive Committee)
- Treasurer 2010-12
7. Appointment of working groups
8. Appointment of auditor.
9. Any other business.

Annual Report of the Nordic Hemophilia Council (NHC) Executive Committee 2009-2010

Current Nordic Hemophilia Council members:
Jan Astermark (Malmö), Fariba Baghei (Göteborg), Erik Berntorp (Malmö), Jens Peter Götze (Copenhagen), Pål Andre Holme (Oslo), Margareta Holmström (Stockholm), Jenny Klintman (Malmö), Pall T. Onundarson (Reykjavik), Lilian Tengborn (Malmö), Anne Mäkipernaa (Helsinki), Riitta Lassila) (Helsinki), Anna-Elina Armstrong (Helsinki).

Executive committee (EC) 2009-2011:
Páll T. Önundarson, chairman/website editor, Jan Astermark, treasurer, Pål Andre Holme, secretary

On the NHC:
The NHC is a non-profit organizaton that was officially founded on November 18th 2008. Statuatory articles (bylaws) of the association were formally passed at the meeting. Stefan Lethagen (Denmark) was elected as the first chairman with Pall T. Önundarson (Iceland) secretary and Jan Astermark (Sweden) as treasurer. Previously the „NHC“ had assembled biannually on a more informal basis for over ten years in association with pharmaceutical company sponsored scientific meetings.
As of January 27th 2009 the NHC has been officially registered as a Danish association with CVR number 31840422.
According to the NHC bylaws the aims of the NHC are:
• Improve knowledge on haemophilia and related disorders
• Further and support the cooperation between the Nordic haemophilia centres
• Further and support the theoretical and clinical education and research within haemophilia and related disorders
• Develop diagnostic and treatment guidelines
• Serve as an expert referral group for, and give advice to authorities, concerning matters within the area of haemophilia and related disorders
• Foster international collaboration
In the spring of 2009 Stefan Lethagen resigned as a chairman due to his move from Rigshospitalet to NovoNordisk Inc. Pall T. Onundarson took over the position of chairman and at the general meeting held in Oslo on June 4th 2009 PTO was formally elected chairman for two years with Jan Astermark as treasurer and Pål Andre Holme as secretary.

Membership:
Currently there are 10 formal paying members of the council, ie they have paid their annual fee. Once in full action about 15-20 members are expected ie most medical specialists working at the hemophilia centers in the Nordic countries.

Financial issues:
At the 2009 annual meeting it was decided that NHC should convene at least annually at a general meeting. In addition the NHC would be organized into smaller working groups on different subjects (ie acquired hemophilia, VWD, etc) and that the executive committee (chairman, secretary and treasurer) should additionally meet twice a year.
The current estimated cost of running the operation of the NHC is as follows:
• Cost of annual general meetings (airline tickets, hotel for 20 paying members = 20 trips)
• Cost of travel and accommodation for two annual meetings of executive committee (4-6 trips)
• Cost related to 2-4 subcommittee meetings annually as decided ad hoc by EC (ca 20 trips)
• Annual cost of maintaining the NHC-website is, about 220 euros (registration 60 euros, hosting 160 euros) and of secretarial assistance (to be negotiated)
Currently the average cost of each trip is estimated at about 500 euros. Thus, the estimated yearly cost of running these operations (assuming 20 members) is in the range of 25,000-30,000 euros.
It was decided to request funding/unconditional support from the six major pharmaceutical companies working within the field of hemophilia and allied disorders in the Nordic countries. It was also discussed that potentially further support could possibly be received from hospitals, governments or through Nordic cooperation grants. The aim is to build up a secure fincancial situation that can support the activities of the NHC for the good of our clients.
For the time being, however, as we build our financial basis, the EC committee will decide ad hoc on each request for cost reimbursement of it´s members. Only paying members can be considered.
The work of the EC in 2009-2010 on financial issues has involved the following:
1. The EC met with representatives of the six major drug companies in Oslo following the general meeting in June 2009. At that meeting we presented the „business-plan for the NHC“ as described above. When in full operation, about 50 trips would need to be sponsored annually by the NHC at an estimated average cost of 500 euros. If six donations of 5,000 euros are received annually the income base would be 30,000 euros which would be adequate in order to run the full operation.
Our request and business plan was met very favorably by the industry. It was discussed that sponsors would receive a copy of the annual report. The annual report should demonstrate the work in progress (ie guidelines, interim proceedings of subcommittees etc) since annual support would be contingent on such progress and appropriate use of the funds. It was also discussed that sponsors should follow EU rules or the Swedish LEAF rules so that the grants would be unconditional/the NHC tasks could operate independent from the drug companies.

The EC asked for a preliminary downpayment and promised a more detailed proposal before further/annual grants are installed. The question arose if the industry should receive some data from the NHC, eg total factor usage in the area, but no decision was made.

2. Following the meeting in Oslo, the EC sent a detailed proposal letter to the main pharmaceutical companies involved in hemophilia care asking for unrestricted (unconditional) financial support.

3. In the year 2009 we received funding (single payments) from Biovitrum (in 2009) and Octapharma (2009). Further funding has already been received in year 2010 ie from Baxter (2010) and Bayer (2010). The EC will continue to work on securing the financial situation by requesting an annual support of 5000 euros from all the companies.

Guidelines

The NHC has continued to work on clinical guidelines:
1. Acquired hemophilia guidelines were renewed in year 2009, mainly through the initiative and work of Lilian Tengborn. The renewed guidelines are available on the NHC website (http://www.nordhemophilia.org, http://www.nordichemophiliacouncil.org).
2. Von Willebrand guidelines: The current guidelines (from 2008) are being updated by a working group formed in 2009. Andreas Hillarp is the leader of the working group which includes Pål Andre Holme, Pia Petrini, Riitta Lassila, Andrea Landorph and Pall T. Onundarson. The group has met once (courtesy of Octapharma due to our limited finances for now) and the work continues. Anders Hilarp will present an interim report at the current meeting.
3. Hemophilia diagnosis and treatment guidelines: It was decided to await the Swedish guidelines that were being developed at the time (Chair: Erik Berntorp). Possibly the NHC can adapt those later as the NHC guidelines or form a separate subcommittee on the issue.


The NHC website (http://www.nordhemophila.org, http://www.nordichaemophiliacouncil.org).

The website is now in working order and includes a closed site for members only (for meeting notes, bylaws etc) and an open site that will emphasize:
1. Contact information of the Nordic hemophilia centers
2. Information on referral sites within the Nordic countries, referral laboratory information etc.
3. Specific information on bleeding disorders relevant to the Nordic countries, eg vital statistics,
4. NHC member list
5. Proceedings of the NHC, ie guidelines or consensus reports.
6. Links to major educational sites. The NHC website is not designed to compete with major educational sites.
7. Possibly a list of relevant Nordic publications in the field

Only paying members will have access to the closed site. In order to get access (username, password) members should contact Sigridur Þ. Skuladottir (siggask@landspitali.is). If members would like something to be published on the web they should contact the webmaster (PTÖ) or members of the EC.


Proposals/Tasks for 2010-2011:
1. Guidelines
a. Renewed guidelines on VWD diagnosis and treatment (in process)
b. Guidelines on Hemophilia (to be decided).
2. Website
a. Closed site
b. Open site
3. Vital statistics of the Nordic Hemophilia Centers ?/ - Common database
a. EUHASS
b. Web based annual report?
4. Principle of Care document and European Curriculum?
5. Common ID-cards (Bleeding risk cards)?
6. Nordic Consensus Meetings as an NHC activity?
7. Advice to authorites
8. Advice to pharmaceutical companies
a. Should this be offered, how and when – and who pays?
b. EC proposal: Only in response to specific questions that have been addressed at annual general meetings?

Final words:
The NHC is a forum made of specialists in the field of bleeding disorders in the Nordic countries. The NHC enables them to compare practice and assure the use of standardized diagnosis and treatment in their field in the Nordic countries through co-operation.
The NHC also has a potential for scientific cooperation and can give expert advice to health authorites.
The continued cooperation of these physicians will improve care and assure patients, providers and third party payers of best treatment in the Nordic area.
Next general meeting to be decided.

Financial Report of the Nordic Hemophilia Council Year 2009

In the year ended December 31 2009, income from donations from pharmaceutical companies was 74,324 DKK (10,000 euros) and from membership fees 296 DKK (60 euros) with a total income of the year amounting 74,620 DKK (approx 10,013 euros).
The expenditures of the year consisted of website development (13,086 DKK) and other bank-related costs (810 DKK) with a total amount of 13,896 DKK (approx 1,864 euros).
The net surplus of the year ended December 2009 was 60,723 DKK (approx 8,149 euros)

Malmö 10 August, 2010

Jan Astermark, MD PhD, Treasurer NHC

Riitta Lassila, MD PhD, Auditor NHC

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