Washington, D.C. - The APLUS Coalition, an alliance of patient advocacy organizations, has announced a new joint statement in a show of solidarity for those living with conditions requiring the use of blood and/or plasma products. The statement comes after the U.S. Food and Drug Administration (FDA) announced new draft guidance that would implement an individualized risk assessment for all potential donors regardless of their sexual orientation or the gender of their partners. This comes after many years of attention to the deferral criteria for men who have sex with men (MSM).
The coalition includes the Alpha-1 Foundation, GBS/CIDP Foundation International, Hemophilia Federation of America, National Hemophilia Foundation, Immune Deficiency Foundation, and World Federation of Hemophilia. The groups listed here have already signed on in support of the draft guidance from the FDA.
The statement highlights the challenges that individuals with rare diseases – who rely on blood products for their health, wellbeing, and often survival – face and the need for increased support and resources to improve their quality of life – which an expanded pool of blood donors could provide.
“We are proud to stand together with our coalition members to raise awareness and advocate for those living with rare diseases,” said Nathan Schaefer, vice president of public policy at the National Hemophilia Foundation, and the APLUS Coalition chair. “Our collective efforts will help to ensure that the medical needs of these individuals are not overlooked and that they receive the safety, care, and support they deserve in light of this historic change.”
The APLUS Coalition encourages all stakeholders to work together to improve access to treatment, accelerate research, and support patient empowerment. The coalition looks forward to continuing its advocacy efforts and working towards a better future for all those using plasma products.
To read the new statement from the APLUS Coalition, click here.