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Advocacy

Standards Still Apply

Recently, a patient we will call Angela posted a note on a private Facebook page describing a troubling situation she encountered with her home IVIG infusions. She wrote to the group of fellow immune globulin (IG) patients that her infusion company decided that the nurse no longer needed to stay with her for the duration of her infusion.

Because of coronavirus infection risk, some infusion companies are apparently trying to limit the time the nurse spends in the patient’s home. The nurse is instructed to set up the infusion and stay until it had been increased to the scheduled drip rate, then she is to leave, for the rest of the day. Another patient in the group posted that her nurse didn’t leave, but she spent most of the time of the infusion sitting in her car outside the house.

“My infusions take basically eight hours, and she will be here for two of them,” Angela posted. “She’s going to teach my husband how to draw and administer diphenhydramine [an antihistamine used to counteract an allergic reaction, also known as Benadryl] in case of an emergency. I am nervous for sure. What will we do if air gets in the line? What will we do if something goes wrong?”

Angela’s concerns are not unfounded. According to Michelle Vogel, Vice President of Patient Advocacy and Provider Relations at CSI Pharmacy, leaving the patient during an infusion violates strict standards of care established by the Immune Globulin National Society (IgNS), an organization of Ig therapy professionals.

“Not only is this unacceptable, but it is extremely dangerous,” Michelle says. “The nurse needs to constantly monitor the patient for infusion reactions. This is crucial and cannot be done over the phone or if the nurse is not present.”

“As nurses our duty is to provide safe and effective nursing care,” says Brittany Isaacs, RN, IgCN, Director of Nursing at CSI Pharmacy. “Our nursing judgement should not be clouded by situations that place a patient or their safety in jeopardy. Our duty is to do no harm, so we need to protect both the patient and ourselves during any encounter. Ensuring proper personal protective equipment is doned to keep everyone safe and following the guidelines outlined by the CDC, WHO, IgNS, and the Infusion Nurses Society allows a nurse to continue to provide safe and effective nursing care during home infusions.”

While COVID-19 has caused many changes in healthcare protocols, patient safety should always be the ultimate guiding principle. The following guidelines are drawn from IgNS’s Immune Globulin Standards of Practice and COVID-19 Resource Guide and FAQ.

During the COVID-19 pandemic, patients receiving in-home immune globulin therapy can expect the following from their specialty pharmacy or home infusion company:

  1. Pharmacy personnel will wear personal protective equipment while packing the medications and supplies that are sent to the patient’s home.
  2. The home infusion nurse will be screened by their company for COVID-19 symptoms to ensure they will not carry infection into the patient’s home.
  3. Patients will be screened to ensure they do not have COVID-19 symptoms before being infused.
  4. Nurses will wear personal protective equipment, including masks, gown, gloves, and face protection, while in the home.
  5. Social distancing should be maintained to the extent possible, except when providing direct patient care.
  6. Patients should wear a mask or face covering while the nurse is in the home.
  7. Patients can request that their specialty pharmacy include masks, gloves, and hand sanitizer in their IG shipment.

The following practices are not acceptable, even during COVID-19 restrictions:

  1. Neither the patient nor a family member should be taught to self-infuse IVIG or to remove the IV after the infusion is completed.
  2. The infusion nurse should never leave the home for any reason while the infusion is in process. This includes sitting in her/his car outside of the home during the infusion.
  3. Family members should not be asked to leave the home during the infusion.
  4. Nurses should never refuse to wear personal protective equipment.

If you are uncomfortable or do not feel safe with your infusion company’s changes in protocol, please do not stop treatment! Staying on therapy is vital. If your company is unwilling to adhere to these standards of care, you may want to consider changing companies. If you need help with this, CSI Pharmacy’s patient advocates can help, even if you are not our patient.

Additional resources can be found here:

Infusion therapy standards of practice. Journal of Infusion Nursing

Immune Globulin National Society – Standards and guides

The role of an IG infusion nurse. IG Living Magazine. August/September 2013

National Home Infusion Association

IDF guide for nurses: Immunoglobulin therapy for primary immunodeficiency diseases Immune Deficiency Foundation

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Advocacy CSI Pharmacy stories

It’s Our Turn

As a member of CSI Pharmacy’s patient advocacy team, it’s my job to create materials for our campaign to increase plasma donations. We’re working to encourage people, especially family members and friends of those who rely on immune globulin therapy, to roll up their sleeves and give back by giving their plasma.

The coronavirus crisis has slowed donations of this life-saving serum from which immune globulin (IG) therapies are made. Together with the Immune Globulin National Society (IgNS), CSI Pharmacy is supporting the #ItsMyTurn campaign, encouraging those of us who are not on the front lines of the battle against COVID-19 to consider this opportunity to be a hero in a different way.

While I sat safely socially isolating in my home, organizing webinars, writing patient stories, and creating social media memes, this voice kept nagging at the back of my head: You could donate, it said.

I could, I thought. But the closest plasma donation center is an hour away from where I live in Central Virginia. But it would take me half the day to donate. But I’d have to do it on a regular basis; a one-time shot won’t work.

Still, I just couldn’t sit here urging others to do this important work if I weren’t willing to get off my “buts” and do my part too. I work remotely all the time anyway, and I could bring my laptop and check social media while I donated. I could commit to donating once a week. So I made an appointment and started donating.

But I’m not the only member of the CSI Pharmacy staff getting out of the workplace to donate plasma. Our leadership is making this a movement by encouraging all employees to become plasma donor heroes. And CSI Pharmacy CEO James Sheets is leading the way to the donation center.

“This is an opportunity for us to give back to our community of patients who depend on this life-saving therapy,” James says. “Our patients are our family, and we can’t let them down. We have to do what we can to be sure they can get the treatments they need.”

For my colleagues who work at the pharmacy headquarters in Wake Village, Texas, there is a certified plasma donation center just three miles away in Texarkana. CSI Pharmacy team members are given time to donate during working hours. Those who donate receive a special #ItsMyTurn t-shirt. James has even created a contest to encourage employees to make donating a routine part of their week.

“Our team members are motivated to this cause, because they’re so connected to our patients and their therapies,” James says. “They know how challenging it can be for folks when IG products are in short supply.”

With seven donations under his belt so far, delivery technician Justin McNeill is leading in donations among the CSI Pharmacy employees. He’s grateful for the time to give, but for him it’s not really about the contest or the modest payment he receives as a donor. 

“If there’s a shortage on our IG products, our patients aren’t going to get the medicine they need,” Justin says. “I figure I’ve got it to give, so I might as well.”

Roxanne Ward, CSI Pharmacy’s Regional Nursing Supervisor in Little Rock, Arkansas got three of her nurses together to make an event of their trip to the plasma donation center. Knowing that plasma donations are down right now is what made her want to take this extra step for her patients.

“I treat so many people who rely on this,” she says. “I felt like donating is the least I can do to help the people I care for.”

Not everyone at CSI Pharmacy will qualify to donate plasma, though. Eligibility guidelines are strict, so those with certain medical conditions, those who take certain medications, or those who may have been exposed certain blood-borne pathogens won’t be able to give. These team members can still participate in our program, however, by recruiting someone else to donate in their place.

“I really wanted to be a plasma donor because it’s so important that we have enough plasma for those who need these therapies,” says VP of Patient Advocacy and Provider Relations Michelle Vogel. “Unfortunately, I’ve used blood products (platelets) in the last year, so I don’t qualify. So I asked my family to help.”

Michelle’s brother-in-law, who was among the four members of her family to volunteer, knows intimately how important IG therapies can be. His mother has myasthenia gravis and has been treated for many years with IVIG.

“We’re really proud of the response from our team members,” James says. “It’s an important effort, and we’d like to invite other businesses and organizations to join this effort to short-circuit an IG shortage by encouraging their employees to donate plasma. Together we can make a difference.”

#ItsMyTurn

Categories
Advocacy Patient stories

Profile of a Plasma Donor Hero

Two-and-a-half years ago when she joined a book club through the Wounded Warriors Project (WWP), a nonprofit organization that provides programs and services for wounded veterans, Torey Reese wasn’t thinking about how much she enjoyed reading or needed some motivation to finish a book. She just wanted to find friends.

Like others in this caregiver’s group, Torey had a husband at home who had been injured during active duty as a Marine. She and her family had relocated to San Antonio, Texas a year and a half earlier. Her second child was born shortly after the move with some health problems that required several surgeries. Because of her family’s healthcare needs at the time, she wasn’t working, and she was feeling pretty isolated. The book club was a way for her to get together with others who shared some of the challenges she was dealing with.

“Pretty much immediately I thought I wanted to be friends with Amanda,” Torey says. “We loved similar types of books, and that just kind of sparked the friendship.”

Amanda Martin was there at the book club because she too cares for a former military husband with serious health issues. Since meeting three years ago, the two have found lots of other things they have in common, including children that are around the same age. And except for their current social distancing because of COVID-19, they and their kids have been inseparable.

But Amanda and her 9-year-old daughter Rita live with primary immunodeficiency disorders, which make them vulnerable to recurrent infections. Amanda depends on intravenous immune globulin (IVIG) infusions twice a month to stay healthy. Rita too receives subcutaneous IG weekly.

“Immune globulin helps control our infections,” Amanda says. “Our lives are so much better because of it. It enables my daughter to go to school. It enables me to be out in the community and to advocate for my husband. I wouldn’t be able to function as well as I do without it.”

When Torey found out about Amanda’s and Rita’s disorder and the life-saving therapy they depend on, she had to help. Immune globulin is not a drug that can be mixed up in a laboratory. It is made from donated human plasma, the golden-colored liquid that remains after the red blood cells are removed. It takes 130 plasma donations to treat one immunodeficiency patient for one year. When donations decrease, so do immune globulin supplies. If there is a shortage, as we had last summer, Amanda and Rita risk having to go a longer period of time between their infusions. They may even have to go without.

So once a week or so, Torey goes to one of more than 800 certified plasma donation centers in the country to give a bit of her plasma. She wishes she could donate twice a week, which is the maximum donors are allowed. But in addition to caring for her husband and two boys, Cayden 10 and Caspian 3, Torey now works as an accountant for a small nonprofit organization. Once a week is all she can manage right now. Still, this is a long-term commitment for Torey, who has been donating for nearly a year now.

“It’s something I can directly do to help them stay alive and stay healthy,” says Torey, who has donated plasma in the past. “I never knew anybody before who directly benefited from my donations. So when you have a person you care about, who is a real face and a real name and a real story to you, it’s hard to not want to help them. I mean, it’s a minor inconvenience to me, but it’s a major inconvenience to them.”

“I can’t express my gratitude enough for her doing this,” Amanda says with a catch in her throat. “It’s something my daughter and I talk about when we get our infusions. We’re very, very grateful and just lucky that Torey is healthy and willing to do it. This may not seem like a heroic thing to do, but for the people who benefit from it, it absolutely is.”

The COVID-19 pandemic has caused a significant reduction in plasma donations in recent months. CSI Pharmacy, in partnership with the Immune Globulin National Society (IGNS) and their #ItsMyTurn campaign, urge those who are eligible to commit to donating plasma to help avoid a shortage of immune globulin and other life-saving plasma-derived products in the months to come. Reminder: It is important to seek out a certified plasma donation center to be sure your donation is used for IG products. (Donations made at blood banks and the Red Cross are not used to create IG products.)