June 30, 2020
By Lisa Butler, Executive Director GBS|CIDP Foundation International
Imagine the shock and helplessness of seeing your child’s body suddenly growing weak, clumsy, and unable to walk, or even stand; the fear that they may never live a normal life, or even survive this terrifying, disabling disorder. Imagine being greeted with the puzzlement of healthcare professionals, a battery of tests, misdiagnosis, needles and uncertainty – all the while the condition worsening before your eyes, and this person, this child, slipping right through your fingers. How will this all end? I truly hope for you, for the sake of your family, community and loved ones, that this feeling, this picture I have painted, stays only in your imagination. And that you never spiral down to the level of desperation brought on by a very rare and disabling condition, like I did.
On January 28th, 2001, my son was diagnosed with Guillain-Barre Syndrome after ten days of rapid physical decline and mobility. He was admitted to ICU, diagnosed and was treated with Immune Globulin, a plasma product. My entire family was given a gift; the life-saving gift of plasma donation. And although he left the hospital strapped to a wheel chair, lacking the strength to even sit upright, he began a recovery that would progress and regress with a second stay in ICU and a second round of immune globulin. Source plasma is used to manufacture life-saving bio-medications for people living with rare, serious, and chronic diseases and will allow those individuals to live normal, healthy lives. In fact, Source plasma donors have safely donated – at a conservative estimate – more than 500 million times over the past few decades, saving countless lives. Thanks to these dedicated plasma donors, our son did recover, he is now part of the 5% of patients in the rare disease community of 7,000 that has a therapy.
When I learned about the recent actions taken by US Customs and Border Protection (CBP) agents to stop Mexican nationals from crossing the border to donate source plasma, I was struck by the lack of consideration regarding the life-changing impact that plasma donors have on the lives of so many. In fact, American patients rely on plasma donated by healthy individuals at nearly 1000 plasma centers nationwide, including approximately 50 near the U.S. – Mexico Border, where plasma donation has been in place for nearly 30 years. This change will not only effect American lives, but those patients around the world who depend on access to plasma-derived therapy.
There has already been a 20% decrease in plasma donation in 2020 during the COVID-19 pandemic and this action could result in an even more devastating decrease. To me, an unnecessary shortage of available treatment, would have essentially denied my son from his recovery and his future. If we sit back, if we allow a long standing public health policy to be fickle, debated and reinterpreted, how far will its unintended effects reach? What impact will it have of the lives of patients who depend on these treatments? And how many will simply be left behind?
Plasma donors are heroes and they have made a monumental difference in the lives of others. As the mother of child stricken with GBS, and the Executive Director of the GBS|CIDP Foundation International, an organization whose 44,000 members depend on the Foundation to fight for access to these life-saving treatments, I offer an infinite thank you to all donors, from all corners of the world and a plea to allow their good will and intentions to continue to help those in need.
For more information: https://www.plasmahero.org/news/plasma-donors-border-international-concern
Spanish version: https://www.gbs-cidp.org/wp-content/uploads/2021/07/En-respuesta-a-la-CBP-que-impide-que-los-mexicanos-donen-plasma-sanguineo.pdf