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IG Therapy

Does IG Contain COVID Antibodies?

Many who depend on immune globulin therapy to treat their autoimmune or primary immune deficiency disease wonder about the presence of antibodies against COVID-19 in the IG products they use. If so, they want to know if it’s possible that these antibodies might protect them against this deadly infection.

To find out, we contacted one of the manufacturers we work with: Octapharma, which produces Octagam, Panzyga, and Cutaquig.

The company ran a study in which they tested their IVIG and SCIG products derived from donated plasm they collected in the United States to see if they contained antibodies to SARS-CoV-2, the virus that causes COVID-19. The testing was done from the end of 2020 through June 2021 and tested to see if these antibodies could react to and neutralize the virus.

They found that their IG products do indeed contain antibodies to SARS-CoV-2, and they do have the ability to neutralize the virus. They also found that concentrations of these antibodies increased over the time of the study, probably as a result of increasing numbers of donors who had been infected or vaccinated before donating their plasma.

According to the company spokesperson, “The increasing levels of SARS-CoV-2 antibodies in Octapharma IVIG and SCIG products indicate that a certain level of protection could be possible against COVID-19 in patients…who are receiving standard IG therapy.”

Given these results, it’s likely that other brands of IG also contain some level of COVID antibodies as well. In fact, a similar study conducted by Takeda evaluated SARS-CoV-2 antibodies in their product, Gammagard Liquid, and found similar results.

Researchers from both studies expect COVID antibodies to continue to increase in the plasma supply as more donors are exposed to or vaccinated against the SARS-CoV-2 virus. They went on to predict that, given the six-month lead time from plasma collection to release of the IG product, IG users can expect a similar level of antibodies as that found in convalescent plasma (that is, plasma donated by individuals who have recently recovered from COVID) by summer 2021.

We want to stress, however, that it is impossible to know at what levels SARS-CoV-2 antibodies may be present in any given dose of IG. It is also unclear exactly how high plasma antibody levels would need to be in order to provide COVID protection to primary immune deficient or autoimmune patients through IG therapy.

Therefore, immune globulin therapy should not be considered a source of protection against COVID infection. According to the CDC, vaccination against SARS-CoV-2 remains the best way to avoid severe disease and hospitalization.

Read the report of Octapharma’s study here.

Read the report of Takeda’s study here.

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Health Information Patient communities

COVID Vaccine and Our Patient Communities

Across the country we are starting to see the light at the end of the tunnel as the rollout of COVID-19 vaccines has begun. For many of our patients with primary immunodeficiency diseases or autoimmune conditions, however, getting vaccinated is not a straightforward decision. They have lots of questions and must weigh carefully a number of considerations.

Immunologist and rheumatologist Dr. Terry Harville has some concerns, too. “There are questions in my mind that haven’t been fully answered,” he says about the new vaccines that have recently been granted emergency use authorization by the Food and Drug Administration (FDA). “And I’m worried that there will be unintended consequences.”

The fact that we have only two months’ worth of safety data from the clinical trials testing these new vaccines from Pfizer/BioNTech and Moderna leaves many medical professionals worried about longer-term effects. Others are unsure about how the vaccines will react in patients with rare autoimmune and primary immunodeficiency diseases, because testing did not include people who live with these conditions.

Despite these concerns, Dr. Harville—along with most other healthcare practitioners—stresses that most people should still get the vaccine. Because when hundreds of thousands of people get COVID and one or two percent of them die, the statistics overwhelmingly support COVID-19 vaccination.

Dr. Harville, who is a professor of medicine at the University of Arkansas for Medical Sciences and an expert in primary immunodeficiency disorders, offers some guidelines for those who are trying to make a decision about the vaccine and might be at greater risk for complications from it.

If you have a primary immunodeficiency (PI) disease, you probably already know that you need to be careful about taking immunizations, especially if they are made with live virus. The COVID-19 vaccines that are currently being administered, however, are not made with live virus. They are created from a man-made part of the virus’s genetic code called mRNA. This means they are safer for those who are unable to take live virus vaccines.

With a few exceptions, Dr. Harville says, “It is the general consensus that we don’t see any reason to not vaccinate those with primary immune deficiency diseases.”

One exception is interferonopathies, IDs associated with dysfunction in components of the immune system called interferons. Another exception is CTLA4 deficiency. These are conditions in which patients tend to develop autoimmune disorders. Dr. Harville recommends that individuals with these types of ID should probably not get the currently available COVID vaccines. While there is no data to support this at this time, there is concern among immunologists that vaccination in this group of patients may trigger an overly aggressive immune response that would be harmful. As more data becomes available, better recommendations will be forthcoming.

If you use immune globulin therapy, there appears to be no reason you shouldn’t get the vaccine. In fact, even if you get the disease, you may actually be better off than others.

“What’s interesting is,” Dr. Harville says, “if you look at SARS-CoV-2 infection in patients with antibody deficiencies—whether that’s X-linked agammaglobulinemia (XLA) or common variable immunodeficiency (CVID)—when these patients are receiving appropriate immunoglobulin (IG) replacement therapy, they tend to have milder disease.”

Intravenous immunoglobulin (IVIG) has even been used, in some cases, to treat COVID-19 infection. While clinical trials to prove effectiveness are still ongoing, some physicians believe IVIG does decrease the risk of severe complications. IG manufactured from the plasma of people who have recovered from COVID-19 infection is also being tested as a treatment.

If you have had a severe reaction to immunizations in the past, this may be a reason to opt out of getting the COVID vaccine. This includes those who have a primary immunodeficiency disorder and developed the infection after receiving a vaccine. It also includes autoimmune disease patients who have experienced a severe flare of their symptoms after a vaccination.

In the 1976, there was a rise in cases of the autoimmune condition known as Guillain-Barré syndrome (GBS) that was thought to be triggered by the swine flu vaccine given that year. This was an inactivated virus vaccine, not the type of mRNA vaccine we now have with COVID. Nevertheless, if you’ve had GBS in the past, be sure to let your healthcare provider know this, as it may be a consideration for whether or not you should get the COVID vaccine.

During the COVID vaccine clinical trials, a very small number of participants who received the Pfizer vaccine developed a severe, life-threatening allergic reaction. Since then, others have also had what is called an anaphylactic response soon after getting vaccinated. If you have ever experienced shortness of breath, tightening in the throat, swollen lips or face, or other severe allergic symptoms, you should probably not get this vaccine in particular. (Other vaccines using whole virus are currently in development and will likely be safer.) Anyone who does get a COVID vaccine should be observed for at least 15 minutes and be sure the healthcare personnel administering it have emergency equipment needed to respond to anaphylaxis.

Regardless of your disease, everyone can reduce their own risk. Dr. Harville stresses that, even if you get vaccinated, it’s still important to wear a mask, wash your hands, and maintain physical distance from others.

“Ultimately whether you take or do not take the vaccine is an individual patient decision,” Dr. Harville says. “This should be made after weighing all the risks and benefits and based on a discussion with your physician.”

We highly recommend that you learn more about the risks and benefits of COVID-19 vaccination as it relates to your particular situation. The Centers for Disease Control and Prevention (CDC) offers these guidelines for COVID-19 vaccination for those with underlying medical conditions. In addition, a number of disease organizations offer educational programming about the impact of the virus and the vaccine on specific disease conditions.

Please also see disease-specific statements about COVID-19 vaccines from these patient organizations:

Guillain-Barré syndrome – GBS|CIDP Foundation

Immune Deficiency Foundation

Myasthenia Gravis Foundation of America

The Myositis Association

Myositis Support and Understanding

Platelet Disorder Support Association

Categories
Health Information

Get Your Flu Shot Now

For some, getting a flu shot is just part of the fall routine every year. Immunization against the virus that causes influenza prevents millions of people from getting the disease, makes the disease less severe if you do get it, and can prevent death from severe disease and its complications. According to the Centers for Disease Control and Prevention (CDC), influenza causes an estimated 12,000 to 61,000 deaths every year in this country.

This year, because of the COVID-19 pandemic, physicians and public health officials say it’s even more important that everyone over the age of six months get a flu shot. This is especially important if you have an underlying health condition that makes you more at risk for developing complications if you get the flu. While the influenza vaccine will not prevent you from getting COVID-19 (researchers are still working on a vaccine for this different virus), it will help you avoid getting seriously sick with or—heaven forbid—dying from the flu. And the fewer people who get the flu, the more it saves healthcare resources that are still urgently needed for treating COVID-19 patients.

Those who are at high risk for flu complications are also at greater risk for getting COVID-19 and having serious outcomes. If you have an autoimmune condition or immune deficiency disease, such as myositis, myasthenia gravis, pemphigus and pemphigoid, chronic inflammatory demyelinating polyneuropathy (CIDP), and primary immunodeficiency (PI), this means you. You are at a much greater risk for getting sick with the flu and at greater risk for developing complications like pneumonia if you do. If you have heart disease, cancer, or diabetes, getting the flu can also make these conditions worse.

Getting the flu vaccine, however, is not a straightforward decision for some who have these conditions. For example, some people with a history of Guillain-Barré Syndrome (GBS) may have developed this form of muscle paralysis after receiving an influenza immunization. According to the GBS|CIDP Foundation International, the association between GBS and flu vaccines is inconclusive, but they suggest these individuals avoid the vaccine in the future. If you have had GBS, especially if it developed four to six weeks after getting a flu shot, you should talk with your doctor about the risks and benefits of getting the vaccine again.

Another consideration is the aerosol form of the flu vaccine. This is a live attenuated (weakened) influenza vaccine that is given through the nose. While the injected vaccines are made with inactivated virus, the nasal spray is made with live organisms that have been weakened but are still able to activate the body’s immune response against the disease.

The intranasal vaccine is not recommended for those younger than two, older than 50, or those who have a weakened immune system, including some patients who take immune suppressing medications. If you care for or live with someone who is immune compromised, you should also avoid the nasal spray. And if you have an underlying medical condition that puts you at risk for developing severe complications from the flu (such as chronic lung disease, heart disease, kidney disease, liver disorders, neurologic and neuromuscular disorders, blood disorders, and diabetes), it’s important to check with your physician before taking the nasal flu vaccine.

According to the Immune Deficiency Foundation, those with certain forms of immune deficiency (common variable immune deficiency [CVID], severe combined immune deficiency [SCID] or Bruton’s agammaglobulinemia) are unable to develop protective immunity following vaccination. This means their bodies don’t have the infrastructure to develop the immunity needed to keep them from getting sick, so vaccines will not do them any good. In fact, for individuals with these forms of PI, live vaccines—including the influenza nasal spray—may put them in danger of developing severe disease.

The only reason not to get a flu shot is if you have a severe, life-threatening allergy to the vaccine or any of its ingredients. This might include gelatin, certain antibiotics, or other ingredients. If you get hives when you eat eggs, studies have shown that most times you can still get the flu shot. If you have a more serious reaction to eggs or you are worried about this, you should of course talk with your doctor. Egg-free alternative vaccines are available.

The CDC has more information about seasonal influenza and how to prevent it.

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Patient communities

Connecting with Patients is the Reward

As a research scientist, immunologist Huub Kreuwel, PhD never really worked with patients. He spent most of his time in an academic lab, trying to understand the basic biology of certain diseases and identifying molecules that could serve as targets for new therapies. He never got to see what happened in the later stages of drug development—that part where patients got better because of the discoveries he’d made.

When he left academia to serve as medical science liaison at Johnson and Johnson, however, he discovered a whole new experience. Now, years later, as Vice President for Scientific and Medical Affairs in the United States for Octapharma, talking to patients and providers about the plasma-based products his company produces is the best part of his job.

“When I came out of academia, I found it was very satisfying to actually talk to a patient who had tried our drug and had good results,” he says. “As an immunologist, it made sense to work on a lot of these rare diseases like primary immune deficiency and dermatomyositis. And it’s gotten more and more interesting over the years.”

Working in the medical affairs department also offers the opportunity to get involved with a wide variety of projects. Huub and his team work with regulatory agencies when the company is seeking approval for new products. They help set up clinical trials to test new therapies and answer physicians’ questions about how those therapies work. Best of all, he meets the people who benefit from Octapharma’s treatments, such as immune globulin (IG) therapies, and helps them enroll as research subjects in the company’s clinical trials.

Recently, the company completed a trial testing intravenous immune globulin (IVIG) therapy in patients with dermatomyositis (DM). While the results have not yet been made public, Huub says the trial did meet its primary endpoints, so it looks very promising that Octagam 10% will eventually become one of the few FDA-approved treatments for this disabling disease that affects the skin and muscles.

Part of what made this trial so successful was the feedback Huub and his team received from patients. In the process of developing the clinical trial, they worked with patient organizations, including The Myositis Association and Myositis Support and Understanding, to understand how patients experienced the disease so they could improve the study protocol and to help recruit participants for the trial.

“We work on a lot of orphan drugs,” Huub says. “And there aren’t that many patients sometimes, so we need everybody to help us to finish these trials. It worked quite well in the DM trial. Those were very productive relationships.”

The success Octapharma had with this phase III clinical trial with DM will also pave the way for future clinical trials for this indication. When rare diseases have few previous clinical trials, researchers often fumble to find tests that will tell them whether a particular drug is working or not. Octapharma’s trial in DM not only proved that the treatment was effective, it also showed that their measures of effectiveness worked in this patient population.

Huub is now developing protocols to test Octapharma products with other diseases. Among these are pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections (PANDAS for short—a disease in which psychiatric symptoms such as obsessive-compulsive disorder appear suddenly after a strep infection) and secondary immune deficiency (SID—a problem that occurs when immune system deficiencies occur because of something other than genetics, such as HIV or chemotherapy).

As they did with the DM study, he and his team are talking to patients to get input that will improve these studies. One way they do this is by recruiting an advisory board of about a dozen patients who spend the day with company representatives sharing their experiences and suggestions. These open-ended discussions provide insights into all manner of ideas: how to better explain data, ideas for new trials, how patients need to be supported during a trial, and more.

“Those discussions are really good for the company, and usually they’re very productive,” Huub says. “Often patients have ideas for new products or practical solutions that might make our products better. And a lot of times it actually has led to either different products or different marketing material or revamping our website or providing patient education sessions.”

These days the thing that has captured Huub’s interest is COVID-19. Healthcare providers on the front lines of the pandemic are finding success in treating the virus with IG. In fact, recent events have made Octapharma a leader in exploring new therapies for COVID-19.

The company is currently supporting two investigator-initiated projects—one testing IVIG as a treatment for COVID-related respiratory failure, the other using IVIG and steroids to treat COVID-19 patients who are developing heart problems. Octapharma is also conducting their own phase III clinical trial to see if high-dose IVIG can be used to improve severe COVID-19 symptoms. Initial results from the investigator-initiated study with COVID-related respiratory failure are very promising.

“Of course COVID is horrible,” Huub says. “But it also became an opportunity for us to delve deeper into IVIG and how it can potentially work in that disease. It’s very satisfying for me personally and for my team to try and come up with other drugs that could help COVID. So overall, it’s been a very interesting ride.”

Categories
Health Information

How to Reengage with Less Risk

We’re now four months into a global pandemic, and lots of us are just tired of staying home. Most of the folks in our patient communities, however, have underlying medical conditions that put them at higher risk for developing severe COVID-19 infections. So while others consider reemerging into the world again as states start lifting social distancing restrictions, our patients might be reluctant to take this step.

Still, completely avoiding contact with others for an indefinite period of time is not a viable option either. Human beings need physical and social contact with other human beings, if only to stay sane. The social isolation we’ve been enduring since shutdowns in March has caused serious anxiety and depression for a significant number of people, especially those who live alone.

Fortunately, public health experts say the decision doesn’t have to be either/or. While staying home is still the lowest-risk option for avoiding infection, there are lots of ways to socialize that don’t involve crowded indoor spaces where no one is wearing a face mask (the highest risk option). Weighing the risks of contact with others against the possible benefits to your health can help make the decision-making process easier. Here are some things to think about:

Consider the risk for you and your immediate contacts. If you or someone you live with is especially vulnerable to infection, this is an important factor in weighing how much you want to risk coming in contact with someone who might give you COVID-19.

It’s also important to think about those outside your household with whom you may want to socialize and how much exposure they might have had too. You may want to consider creating a pandemic “pod,” a small cohort of friends or relatives with whom you choose to interact somewhat normally but who agree to stay socially distant outside the pod.

Keep tabs on how the virus is spreading in your community. The number of new cases, hospitalizations, and deaths varies widely in different areas of the country. Check local health department reports or find out here whether these numbers are increasing or decreasing where you live. If they are climbing or remain high, you may want to rethink whether going to a salon for a haircut is a good idea, even if restrictions have been lifted.

Think about how risky the activity is. Most people know the basics of how to stay safe from coronavirus infection. Keep these ideas in mind as you make decisions about venturing out in public. These include:

  • Wearing face covering when out in public significantly reduces transmission, both for the wearer and the ones they are with.
  • Maintaining a distance of at least six feet from others decreases the chances of contact with infected droplets.
  • Large gatherings, especially if they are indoors and especially if others are not wearing face covering, significantly increase the risk that someone will pass on the virus.
  • Encounters in the outdoors are safer than those in close indoor spaces.
  • Limiting the time you spend among others, especially if it is indoors, reduces the chances of encountering the virus.
  • Bringing your own (BYO) food and drink means a lower risk of transmitting the virus through touching a contaminated surface. Bringing your own chairs or picnic blankets also helps you keep your distance from others in an outdoors group.
  • Handwashing with soap and water or using hand sanitizer is still the most effective way to prevent transmission of coronavirus and other disease-causing organisms.

And finally, here are additional tips from NYC Health to keep yourself and your loved ones safe and healthy as pandemic restrictions start to lift. Be careful out there!

Categories
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. Leaving the patient during an infusion can be dangerous and violates strict standards of care established by the Immune Globulin National Society (IgNS), an organization of Ig therapy professionals.

“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 donned 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

Categories
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.

“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.)

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Health Information Patient communities

Get Connected

When a person has a rare disease, they often feel isolated, confused, afraid, and hopeless. Living with a chronic medical condition that no one around you has ever heard of let alone understands is a challenge on many levels. With rare diseases especially, even health care professionals often don’t understand the disease well, which can add to your confusion and fear. Combine that with the challenges and isolation of COVID-19 confinement, and you may find you’re wading knee deep in serious hot water with mental health issues.

Those who care for someone who is diagnosed with a chronic, debilitating, and mysterious disease can also be devastated. Often you must sacrifice your own goals and dreams in order to attend to the needs of your loved one. Depression is common in caregivers who often suffer in silence, unwilling to reveal their own negative feelings.

Connecting with a support group can be a tremendous help, however. Such groups can be an important source of both emotional encouragement and practical advice. Benefits can include:

  1. Meeting and making friends with other people who live with the same rare disease and similar experiences
  2. Learning about the disease and how it is treated
  3. Being able to talk honestly about your disease and your feelings about it with others who “get it”
  4. Learning how others cope with the challenges of the disease
  5. Developing hope and a sense of empowerment that you can make it through the challenges

Formal patient support organizations often expand their reach to include advocating to improve healthcare for other rare disease patients, supporting scientific research, and providing financial assistance to members.

CSI Pharmacy wants our patients to thrive, despite their health challenges. That’s why we connect with a number of groups that support the patient communities we serve. These are all nonprofit organizations, and CSI Pharmacy supports them financially so they can support our patients and caregivers. We encourage our patients to reach out to one or more of the following groups, especially at this time of uncertainty during the COVID lockdown:

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Advocacy Patient stories

Giving Back One Unit at a Time

Marianne Moyer got a standing ovation recently when she announced to a roomful of rare disease patients at a medical conference that her husband donates plasma every two weeks. Her husband, John, started donating blood and plasma more than 20 years ago, even before Marianne started relying on intravenous immune globulin (IVIG) therapy—a plasma-derived product—to treat myositis. Since then he estimates he has given about 18 gallons of blood and 63 gallons of plasma.

For those like Marianne who depend on immune globulin to help control inflammation in autoimmune and immune deficiency diseases, having enough plasma available to companies that make plasma products is a constant concern. Human plasma is not a drug that can be artificially synthesized. It requires people to donate on a regular basis so therapies such as immunoglobulins, coagulation factors, alpha-1 proteinase inhibitor, and albumin can be produced.

This is an important concern right now because fewer people are donating plasma because of coronavirus restrictions. Many citizens are staying home, which means many are not donating. Donation centers are also taking steps to create social distance within the facility, so they are asking donors to schedule appointments rather than drop in, and they are seating donors farther away from each other. Fewer donations now could mean a shortage of plasma-derived therapies in six to nine months.

Most people are aware of how important donating blood can be, especially when disaster strikes. People also assume that when they give their blood, whatever other blood products are needed can be derived from that donation. The truth is a bit more complicated, though.

Plasma is the golden yellow liquid part of human blood in which red blood cells and proteins are carried throughout the body. Donors can offer their whole blood—red cells and all—on a one-time basis or, like John has done, they can donate every 56 days.

Plasma donors, however, can give more often, because those all-important oxygen-carrying red blood cells are returned to their bloodstream during the donation process. And because plasma is manufactured into lifesaving therapies for many diseases, plasma donors are encouraged to give regularly—as often as twice a week, at a certified plasma donation center.

For the Moyers, volunteering in the community is a way of life. They have been running one of the most successful myositis support groups in southwest Florida for 13 years. Marianne has served on the board of the local Red Cross, and John has been treasurer of their homeowners association and property manager at their church. And they both volunteer with programs at the local public schools. For John, donating plasma is just another way to give back.

“September 11 happened shortly after we moved here to Florida,” John says. “I would donate blood when we lived in Washington, D.C. So when they were calling for blood [after the 9/11 attacks], we both rushed down to the hospital to donate.”

Marianne was heartbroken to find out that, because of her myositis, she was ineligible to donate. But John has been giving about every two weeks ever since. When Marianne was prescribed IVIG in 2003, his donations became even more personal.

Marianne has a form of myositis called necrotizing myopathy, an autoimmune disease of the muscles that makes it difficult for her to do things like climb stairs and lift even small objects. Myositis has also brought interstitial lung disease, which causes scarring in the lungs making it difficult for Marianne to breathe at times. Her IVIG infusions—which she receives in the comfort of her home—control these symptoms well, allowing her to live a fairly normal life.

“All the years when we were working, we didn’t have much time to participate in community affairs or charities,” John says. “Life has been good to us, and now that we are retired, I can afford to spend a couple hours at the donor center. It just makes me feel good to know that I’m helping, not just one person, but many people.”