Exporting Expertise

Infusion therapy expert travels to Asia to improve PI patient care.

Patty Riley teaching students during a trip to Asia

CSL Behring’s Patty Riley teaches nurses about subcutaneous immunoglobulin therapy during a recent trip to Asia. Riley, a registered nurse and an executive medical science liaison, visited Taiwan, Hong Kong and Vietnam.

 

When you travel to a new country, you expect some surprises. Infusion therapy expert Patty Riley had a few of them on her nurse training trip in Asia.

Riley, a CSL Behring Executive Medical Science Liaison who lives in Duluth, Minnesota, traveled to Vietnam, Taiwan and Hong Kong to teach doctors and nurses about subcutaneous immunoglobulin (SCIG) infusions for patients who have immune system defects, also known as primary immunodeficiencies (PI). According to the Immune Deficiency Foundation, there are more than 300 types of PI recognized by the World Health Organization.

Subcutaneous immunoglobulin is infused under the skin using a small needle, syringe and an infusion pump. SCIG offers a variety of advantages compared to using an intravenous (IV) line to deliver immunoglobulin (IG).  Intravenous immunoglobulin (IVIG) must be administered by a nurse, either at a hospital or during an in-home visit. SCIG does not require an IV line and patients can be taught to self-administer, promoting patient independence.

SCIG is available in the United States, Canada, Europe, Japan and several other countries around the world.

“What’s different in the countries I visited is that these medicines are not typically self-infused,” said Riley, also a former infusion nurse.

Before her trip, Riley consulted with the company’s Asia-Pacific team and packed a bag full of infusion pumps. She also had her entire presentation translated into the local languages spoken by her students.

Riley’s first surprise: Having to learn how to use a new infusion pump, whose instructions were in Vietnamese.

Another surprise – although a pleasant one – was that the medical staff in the hospitals she visited was so intensely interested in getting this training. One nurse told Riley she came to the multi-hour education session right after finishing the nightshift. 

KL Wang, CSL Behring’s Commercial Director in Taiwan, also noted how engaged Riley’s students were.

“Participants appreciated having a chance to simulate and practice precisely how to operate the pump,” Wang said.

SCIG could save patients time, trouble

In the countries Riley visited, the current standard of care is to get IVIG infusions at a hospital. That means patients and families must spend time on the road.

“In Vietnam, IVIG is currently available in tertiary hospitals that remote patients have to travel long distances to for administration,” said Wicks Chung, CSL Behring’s Commercial Manager in Asia. “With the launch of SCIG, we intend to get it enlisted in key provincial hospitals to minimize patient travel time as well as hours lost for work and study.”

Beyond the convenience, SCIG has the potential to help immune-compromised people stay healthier, he said. If it’s easier to keep up with regular treatments, a patient will have a steadier level of IG in his or her body and may enjoy better protection from infection, Chung said.

Roger Cheng, CSL Behring’s Associate Commercial Director in Hong Kong, believes SCIG could deliver better compliance – which is when a patient closely follows the doctor’s treatment plan. And compliance, he said, is critical in the successful treatment of primary immune disease. 

Without the replacement IG, PI patients get sick a lot and risk getting serious infections. They miss a lot of school and work and have frequent bouts of bronchitis, ear infections, sinus infections and upper respiratory infections. They’re often frequent visitors to doctor offices and emergency rooms.

Worldwide, thousands have PI

About 84,000 people around the globe have been diagnosed with some type of PI, according to a 2016 Jeffrey Modell Foundation (JMF) report. Nearly 30,000 of those diagnosed patients are in the United States. That U.S. number grew nearly 19 percent between 2013 and 2015 – an indication that the diagnosis rate is improving.  Another 23,000 PI patients were reported in Western Europe.

Asian countries that provided data reported only about 2,100 cases, and 99 percent of treated patients received IVIG. The numbers were different in Western Europe, where 46 percent used SCIG. In Canada and the United States, it was roughly a third of all patients in 2015, according to the report. Better epidemiological and demographic data could help focus efforts on those at the highest risk, the JMF report said. The public health community also needs to reach the undiagnosed through awareness campaigns tailored to different geographic locations, the report recommended.

It can be more complicated than just providing awareness education for doctors and patients. Genetic testing is not popular in Asia, Wang said. It’s expensive and some consider it shameful to get diagnosed with a genetic disease, like PI, he said. Those attitudes could change for the better through more affordable screenings, a patient registry and increased education and support for patients and families, Wang said. 

In Hong Kong, SCIG is already approved, although patients will pay out of pocket for the therapy. In Taiwan, SCIG received product license approval in December 2017 and the company expects to launch in the coming years after the national healthcare’s reimbursement approval. In Vietnam, the product recently received a special import license.

It was in Vietnam, where Riley found the biggest surprise of all. She walked into the lecture hall to find her audience included, not only doctors and nurses, but also a 14-year-old boy and his father.

The boy, who needs regular IG infusions, traveled three hours to learn about self-infusing SCIG. “You could see this young boy was very excited about learning about this new therapy delivery,” Riley said. “They sat right up front.”