I don’t have to worry about being sick all the time.”
Thanks to an advanced immune globulin (Ig) drug, Cayleigh Kearns is able to attend college and pursue a career. Her story shows the power of plasma-derived therapies to change lives — and puts a human face on the rising demand that challenges health systems worldwide.
“Growing up, I was always getting infections,” Cayleigh Kearns says. “Kidney, sinus, respiratory — I had pneumonia every few months. Then when I was 18, my pediatrician did some tests and found my immune levels were basically rock bottom. So I went to an immunologist, who diagnosed me with common variable immune deficiency, or CVID. I’d known something was up, but I was still shocked. This was not a one-time thing — it’s forever.”
In addition to being highly susceptible to many kinds of infections, people with CVID have an increased risk of developing chronic diseases of the lungs and other organs, as well as certain types of cancer. For Cayleigh, who lives with her parents in London, Ontario, that daunting outlook is only magnified by the immediate impact of frequently being too ill to get out of bed. Her high school marks had suffered, she’d missed out on many aspects of teenage life, and her regimen of antibiotics and steroids caused unwelcome side effects. So, naturally she was relieved when her doctors told her about recently developed Ig drugs that had proven effective in treating patients with CVID.
Unfortunately, the first two drugs Cayleigh tried brought their own physical challenges, including painful inflammation and severe digestive problems. But in early 2019 she switched to a new product that has so far shown promising results. And the advantage of all these drugs is that she can administer them herself through subcutaneous infusion.
“A nurse practitioner came to our house and taught me how to self-inject,” Cayleigh recalls. “At first I was so nervous — my blood pressure went up to something like 190 over 120. But I’ve gotten used to doing it: two pokes, twice a week. I still have moments when I don’t want to do it anymore. But then I see how much more energy I have, going to school or just playing with my little nephews, and I realize what an amazing difference it’s made. I’m so grateful to all the people who donate plasma to help me live a healthy life.”
Systems under pressure
Stories like Cayleigh’s unfold in a challenging health-care environment. On the one hand, advances in medical research are yielding targeted, highly effective treatments for a wide range of diseases. At the same time, health systems must balance a commitment to help as many patients as possible with the need to establish priorities within finite budgets that are often stretched to the limit.
As demand for Ig drugs steadily rises — fuelling efforts to ensure Canada’s plasma sufficiency — the use of subcutaneous Ig drugs is expanding even more dramatically than forecast, putting added stress on supply and pushing up prices. Adding to the pressure, many of these drugs are more expensive to produce, and in some cases, self-injection requires larger doses, further increasing costs. On the other hand, when patients can administer drugs at home, they avoid costly and time-consuming hospital visits.
In short, gauging where to invest within a constant array of promising new Ig drugs is one of the most complex global health challenges of the next decade and beyond. To help meet it, Canadian Blood Services will continue collaborating with clinicians and patient groups to better understand what drives demand and ensure that no patient goes without therapy — while also working with health-system leaders to set responsible and sustainable goals.
“The best I’ve ever been”
For Cayleigh, one priority is clear: “There must be greater awareness among doctors and the general public about the increased need for plasma products. If more of us who rely on these drugs get out there and tell our stories, hopefully more people will want to donate.”
Meanwhile, the 20-year-old has taken advantage of better health to pursue a college diploma in child and youth care. She’s earning top marks and has started her first placement in an elementary school, helping children with emotional and physical needs.
“I still get sick more often than a ‘normal’ person,” Cayleigh says, “but this is definitely the best I’ve ever been. Without these drugs, I would probably die from a severe infection within the next 10 years. So I’m thankful to have a life. And I’m definitely up to the task of working with kids now that I don’t have to worry about being sick all the time.”
Patients who depend on immune globulin and other plasma protein products (PPPs) receive them from the national formulary managed by Canadian Blood Services. We bulk-purchase products on behalf of the provincial and territorial health systems and distribute them to more than 460 hospitals and health-care centres across Canada. We also monitor medical and scientific advances, as well as industry trends, so we can make informed recommendations to health ministries on the optimal product mix for the formulary. In 2018–2019, we distributed more than 368 million units of PPPs for the treatment and care of Canadian patients.