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Global leaders Meeting, London, October/November 2009

As discussed in the INGID eJournal of December 2009, The first Global Leaders Meeting (GLM) organised by the International Patient Organisation for Primary Immunodeficiencies (IPOPI) was held in Kensington, London, UK from Friday 30th October until Sunday 1st November. Gaby Strotmann (and Amena Warner attended as the representatives of INGID.

If you have a look at the link below, you can see all the presentations from the GLM.

• http://www.ipopi.org/publications/glm-2009-presentations.html

World Days 2011

In 2011, there will be 3 special events of importance to us in INGID. Are you or your hospital doing something special to celebrate these days? If so let members of the INGID Board know, and we will include them in the next e-Journal as well as on this website.

Rare Diseases Day: February 28, 2011

February 29th 2008 is the First Rare Disease Day in Europe and beyond. This is the first time patient groups from different countries and representing a variety of diseases are collaborating on a large-scale awareness-raising campaign in favour of rare diseases.

For further information, access the following two websites:

• http://www.rarediseaseday.org/

• http://www.medicalnewstoday.com/articles/98767.php

Sixth World Immunology Day 29th April 2011.

Below are some websites related to this:

• http://www.immunology.org.au/

• http://idfnz.org.nz/news/details/world-day-of-immunology-29th-apr.html

• http://worldpiweek.plus-two.com/home

World Immunology Week: 21 – 29th April 2011.

Below are some websites related to this:

• http://www.worldpiweek.org

Immunoglobulin and the World Health Organisation (WHO)

We can now announce that the joint submission for the reinstatement of immunoglobulin on the WHO List of Essential Medicines was successful and the new WHO List of Essential Medicines has now been posted on the WHO website.

Thanks are due to all who wrote in support, but particular thanks must go to Dr Helen Chapel, David Watters, and members of IPOPI, who put together the application for the inclusion of polyvalent human immunoglobulins to be included in the WHO List of Essential Medicines.

To see the application, click on the website address:

http://mednet3.who.int/EML/expcom/expcom15/reinstatement.htm

where you will be able to follow the links to the application and the expert reviews.

However – we still have work to do as there is now a separate list for children and we failed to get subcutaneous immunoglobulin (SCIg) on the list. So, before May 15th Dr. Chapel and colleagues have to submit a folder on SCIg - as this is so important for children.

As before, supporting statements from doctors, medical and nursing societies/associations and patient groups from all countries, in particular from those who look after children, are needed. The President of INGID will be sending a statement of support from INGID, but it would also be very helpful if individual members of INGID could also submit letters of support. Public comments, including letters of support on the applications may be submitted to: emlsecretariat@who.int.

To look at the WHO list of essential medicines, click onto the web site, which is: http://www.who.int/ medicines/ services/ expertcommittees/ essentialmedicines/ exp_com_essmed_meetings/ en/ index.html

EU (European Union) Consensus Conference
(Peter Vickers and Ann Gardulf)

EU PID Consensus Statement, Recommendations and Report

At the Budapest INGID/ESID/IPOPI conference, the EU PID consensus statement, recommendations and report were released to the press amidst much publicity. This press release was distributed on 5th October, to all the key health journalists across the EU 25 Member States.

Subsequently, the Consensus Conference web site has been fully updated and includes the various Consensus documents in English, French, German, Hungarian, Polish, Swedish, Dutch, Portuguese, Spanish and Italian.

For more information about this conference and the consensus statement click the link below:

• EU PID Conference

This will take you to the 'welcome' page for this conference, and you can then follow the links on that page.

The Conference Room, Paul-Ehrlich Institut, Langen

Summary of Presentations

Nurse Presentations:

• Dr. Ann Gardulf - Quality of Life and Healthservice Costs: Why Diagnosis and Optimal Treatment is Good for the Patient and Good for the Healthcare Systems

• Mrs Amena Warner - The Role of Nurses in recognising Primary immunodeficiencies (PIDs)

• Dr Peter Vickers - Educational Outreach Efforts by Nurses

Other Presentations

• François Houÿez (Health Policy Officer, EORORDIS) - Addressing Inequalities of Access to Health Care in an Expanded Europe

• Professor Edvard Smith (Karolinska Institut, Stockholm) - PIDs - a Public Health Issue?

• Brian O'Mahony (Irish Haemophilia Society) - The Importance of Patient Registries in Rare Diseases

• Dr Helen Chapel (John Radcliffe Infirmary, Oxford) - Overview of PIDs in Adults and Children

• Professor Lennart Hammarström (Karolinska Institut, Stockholm) - Prevalence of PIDs in the European Union (EU)

• Dr. Hilary Longhurst (Barts & The London NHS Trust, London) - Treatment Options: Immunoglobulin Therapy - The Major Therapy Choice in PID

• Professor Christine Kinnon (Institute of Child Health, London) - Treatment Options: Bone Marrow Transplants/Gene Therapy

• Professor Anna Sediva (Charles University, Prague) - Disparity of Diagnosis, Care, andTreatment for PIDs between member states of the EU

• Professor Thomas Szucs (Health Economics, Institut of Social & Preventative Medicine, University of Zurich) - Consequences of Delayed Diagnosis: Health-Care Costs

• Professor Reinholdt Smith (EFIS) - Evaluating Strategies for Early Identification of People with PIDs

• Professor László Maródi (University of Debrecen Medical & Health Science Centre, Hungary) - Educational Outreach Efforts by Physicians - J-Project.

• Mr. Fred Modell (Jeffrey Modell Foundation, USA) & Mrs Anneli Larsson (PIO) - Education Outreach Efforts by Patients

For more information about this conference, click on the address below http://www.eupidconference.com/

Immunoglobulins & Essential Medicines (WHO List)

A few years ago, it was a big surprise for all connected with immunodeficiencies to learn that the World Health Organisation (WHO) had excluded immunoglobulin from its list of essential medicines.

In view of the benefits to people with primary immunodeficiencies IPOPI felt that it could not allow this situation to go unnoticed and contact was made with WHO. Their overtures were well received by the Blood Transfusion Safety Team. Through the IPOPI Blood Committee, steps were taken to advise others of the situation and information was distributed to ensure that submissions were made to the WHO Expert Committee on the Use of Essential Drugs. In view of the extremely short time frame, IPOPI and ESID made those early submissions in 2004. However the WHO did not change their mind and reinstate Immunoglobulin into the list of essential drugs.

However, a recent submission by IPOPI and IUIS has been accepted for further consideration. This means that there is now just a chance that immunoglobulin could be accepted onto the essential drugs list again, but it needs everyone's support to give it a chance. It is up to all who are linked to immunodeficiencies - either as professional, patient, or family member/carer of a patient to support IPOPI and IUIS on this essential measure.

If you visit

• http://mednet3.who.int/EML/expcom/expcom15/applications.htm#M

or

• http://ec.europa.eu/health/ph_projects/2005/action1/ action1_2005_1_en.htm
  

you will see what has been sent to everyone who subscribes to the SANCO
web-site - and that will include all European Health Authorities.

In order to submit comments - hopefully supportive comments! - you should e-mail emlsecretariat@who.int - just make sure you identify your support as being for the IPOPI/IUIS Application to restore Immunoglobulins to the list!

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