Patients With Bleeding Disorders Given Global Voice in PPTA Awareness Campaign
In support of Bleeding Disorders Awareness Month in March, the Plasma Protein Therapeutics Association (PPTA) is providing a global outlet for patients who wish to share their experiences, advocate for therapy access, and thank plasma donors.
The campaign — called “How Is Your Day?” — seeks to heighten awareness of bleeding disorders, which affected 337,641 individuals in 125 countries in 2018, according to the World Federation of Hemophilia’s 20th Report on the Annual Global Survey. It aims to inform and educate decision-makers and the general public.
As part of the effort, the campaign is promoting awareness about the benefits of plasma protein therapy, one of the standard treatments for hemophilia, a genetic disorder caused by the absence of, or defects in, blood clotting factors. Other disorders, including Von Willebrand disease, hereditary angioedema, and chronic inflammatory demyelinating polyneuropathy, also require such therapies.
Specifically, the campaign is calling for worldwide availability of safe and effective plasma therapies for all who need them, and is supporting policies that would improve patient access. It is also highlighting treatment options.
“How Is Your Day” is a global initiative that unites these patients worldwide, the campaign website states. “It amplifies their voices and draws attention to the unique nature of plasma protein therapies. While treatment options (plasma-derived and their recombinant analogs) exist for most people with bleeding disorders, a vast majority of those living with life-threatening, chronic and genetic diseases have no alternatives to these therapies.”
Unlike traditional pharmaceutical treatments, the source material for most plasma protein therapies is human plasma, the component remaining after red and white blood cells and platelets are removed from blood. For this reason, plasma therapies rely largely on donors.
From donation to product completion, the manufacturing process takes between seven months and a year, according to the campaign website. Furthermore, each plasma donation only contains a small quantity of proteins needed to produce a given therapy. In hemophilia, for example, about 1,200 donations are needed to treat one patient for a year.
Another difference is that plasma therapies are non-interchangeable biologics that produce different outcomes for each patient. So, individual patients need access to therapies that are best suited for them. Visit the campaign website for more information about plasma protein therapies.
The trade organization also offers patients and supporters a host of campaign resources, including posters, videos, infographics, fact sheets, a logo, and media background information. It is also encouraging supporters to follow the campaign on Facebook and Twitter, and to comment on and share posts using the hashtag #HowIsYourDay, and tagging @HIYDGlobal.
“‘How is your day?’ For all of us, this is an ordinary question we ask others — and are asked by others — every day,” the website states. “But for so many people around the world living with rare diseases, and who rely on the availability of plasma protein therapies, no day is ordinary.”
The campaign is also asking that, throughout March, patients living with the disorders that are treatable with plasma protein therapies submit stories and photos for possible publication on its website.
One story published is by a hemophilia patient named Ed. “Without my treatment, I would not be able to have any quality of life at all,” he wrote. “I would have difficulty walking or taking a shower, because a bleed into my knees, ankles or hips would prevent me from walking.”
Another story is from Chris, about his and his daughter Allyson’s experience with hemophilia. “As I sit and reflect over the past treatments and therapies available to me for the care of my hemophilia, I am still amazed at the evolution of the treatment and therapies for hemophilia and related bleeding disorders,” he said.
“They offer us the opportunity to have a fighting chance at what I hope is a very long and enjoyable life with our loved ones and friends.”
Go to the website to read all the entries.