Related statements / advisories

July 2010

Resolution of the World Federation of Hemophilia General Assembly on the Supply of Safe High-Quality Clotting Factor Concentrates

On July 15, 2010, at the World Federation of Hemophilia General Assembly, our national member organizations passed the following resolution on the Supply of Safe High-Quality Clotting Factor Concentrates.

Summary of the Resolution (PDF)

WFH Resolution on the Supply of Safe High-Quality Clotting Factor Concentrates (PDF)

June 2010

WFH Statement to the World Health Assembly concerning Resolution EB126.R14, Availability, safety and quality of blood products
The WFH supports Resolution EB126.R14. We welcome the call to member states to accelerate development of national blood collection programmes. Self-sufficiency in safe labile components is a worthy goal. We are well aware of the risks from blood-borne pathogens. In the 1970s and 80s thousands in our community were infected with HBV, HCV and HIV through blood products. In many countries, our members continue to be infected by blood-borne pathogens through the transfusion of labile components. More (PDF)

June 2010

Media Advisory regarding the MSM Blood Donor Deferral Policy
The Department of Health & Human Services, Advisory Committee on Blood Safety and Availability will be reviewing the current Food and Drug Administration (FDA) policy recommending that men who have sex with another man (MSM) even one time since 1977 should be deferred indefinitely from donating blood. More (PDF)

Additional articles on the MSM Blood Donor Deferral Policy

US News: July 12, 2010

US News: July 26, 2010

April 2010

XMRV and Chronic Fatigue Syndrome (CFS)
The World Federation of Hemophilia is closely following scientific developments with regard to XMRV. The decision by Canadian health authorities to defer blood donors who have had chronic fatigue syndrome (CFS) is a precautionary measure taken when there is incomplete information about XMRV. All indications are that an enveloped virus such as XMRV is not a threat to plasma-derived products, such as clotting factor concentrates, as it would be inactivated by current pathogen reduction processes. The action in Canada ensures that recipients of fresh blood products (red cells, platelets, fresh frozen plasma) will also not be at risk. Furthermore the supply of donated blood should not be affected as most people with symptoms of CFS were not eligible to be blood donors even before this decision. For more information, please contact the Canadian Hemophilia Society, a national member organization of the WFH, at chs@hemophilia.ca

See also:
PPTA statement
CBS

April 2010

WFH letter to GTAC - Gene Therapy (PDF)

WFH Letter to A. Bianchi Bonomi Hemophilia and Thrombosis Center - Inhibitor Development in Previously Untreated Patients (PUPs) or Minimally Blood Component-Treated Patients (MBCTPs) (PDF)

WFH Letter to Francis Owen Blood Research Laboratory - Support for UNC Chapel Hill hemophilia dog colony (PDF)

October 30, 2009

President Obama lifts US HIV travel ban
President Obama announced the publication of the rule ending the HIV immigration and travel ban. The lifting of the ban will go into full effect on January 4, after a 60-day waiting period. This means that, starting in the new year, non-US citizens who are HIV positive will have the same rights as anyone else to enter the US for meetings and congresses, tourism or education. The ban has been in effect since since 1987. The WFH participated with many other patient groups to lobby for this change.
President Obama's statement
The detailed rule can be accessed here

October 26, 2009

WFH statement on H1N1 influenza and vaccination
New vaccines are becoming available for H1N1 influenza as the virus continues to spread around the world. The threat of the H1N1 virus is the same for people with bleeding disorders as for anyone else. For the purposes of vaccination, people with hemophilia and other bleeding disorders should be considered part of the general population. More

August 5, 2009

US HIV travel ban
The NHF and WFH have written to the US Secretary of Health and Human Services supporting repeal of the "HIV travel ban." PDF

The NHF has written to US Representative Henry Waxman, Chairman of the Energy and Commerce Committee regarding legislation on biosimilars. PDF

June 3, 2008

World Federation of Hemophilia Medical Advisory Board Advisory on herbal/homeopathic products marketed to treat von Willebrand disease

The Medical Advisory Board of the World Federation of Hemophilia notes that two products, Wilbrintin and Willetab, are being advertised for sale through the internet with the claim of being effective in the treatment of von Willebrand disease. Both these products for oral use are homeopathic or herbal products composed of dilute preparation of herbs and chemicals such as ammonium chloride and potassium nitrate but do not contain von Willebrand factor. These products are marketed by companies based in Europe and can be sold without review or a licence from the European regulatory authorities in view of the nature of their composition. No supporting data from clinical trials are available to support their use.

The Medical Advisory Board does not support the use or marketing of these products for the treatment of a potentially serious condition such as von Willebrand disease in the absence of any supporting evidence of clinical efficacy or approval by the usual pharmaceutical regulatory agencies.

This statement was approved by the WFH Medical Advisory Board on June 3, 2008.

Disclaimer
This material is provided for general information purposes only. The WFH does not engage in the practice of medicine and does not give medical advice. Under no circumstances does the WFH recommend particular treatment for specific individuals. For medical diagnosis or treatment, the WFH recommends that individuals consult their physician or local hemophilia treatment centre.

July 2008

WFH and NHF letters to The Honorable Joseph Biden and to various Congressmen concerning the Tom Lantos and Henry J. Hyde United States Global Leadership against HIV/AIDS, Tuberculosis, and Malaria Reauthorization Act of 2008 and the ban for people traveling to the US who are affected by HIV.
The Honorable Joseph Biden
Congressmen

February 2008

WFH letter to the European Commission concerning a letter from the International Federation of Blood Donors Organizations (IFBDO), titled “Sufficiency of supply of blood and blood products within the European Union.”