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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.

“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

Platelet Disorder Support Association

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Patient communities

Stumbling onto Rare Disease

Susan Foley used to brag that if she told you she forgot, she was lying. For most of her life, she remembered everything. In the last ten years, however, her mind is more like someone with a traumatic brain injury. She loses her train of thought, and sometimes she can’t get the right words to come out when she talks. 

Susan has Hashimoto’s encephalopathy (HE), a type of autoimmune encephalitis (AE) that causes swelling in the brain. When this happens, patients experience an odd array of symptoms. They can say strange things, act like they have no feelings, and stumble, as Susan says, like a drunken sailor. Too often, family members and even doctors think these people are just behaving badly. So getting an accurate diagnosis for this rare disease can be a challenge.

About a year before she was diagnosed, Susan started having trouble walking up steps, noticed tremors in her hands, suffered debilitating headaches, and couldn’t make her bed in the morning without needing to take a nap. She blamed these symptoms on her stressful job. When she began having absence seizures (a type of epilepsy in which the person blanks out for a few seconds, staring off into space) it scared her. She knew she needed to get help.

“I had so many different symptoms that the doctors had no idea what was going on,” Susan says. “My primary doctor kept telling me it was stress related, but I knew there was something more going on. Finally, I asked her to send me to a neurologist.”

Still, it took almost a year of every imaginable diagnostic test and a trip to see a specialist at a large teaching hospital for the neurologist to put all the pieces together. Among the tests the specialist did was a blood test for thyroid antibodies. The results were off the charts. This was the clue the neurologist needed.

“HE has nothing to do with your thyroid,” Susan says. But doctors have noticed that this form of encephalitis is associated with elevated thyroid antibodies. As in Susan’s case, this is often how physicians identify the disease.

Having a diagnosis is one thing but figuring out what this means for your life is a whole different process. When Susan went to the internet in search of accurate information about HE, all she found was a single article. It took a lot more digging through online forums and support groups to find even one other person who had the disease.

That one other person turned out to be Nicola Nelson, a Chicago attorney who had also been recently diagnosed with HE. The two became good friends and, when Susan told Nicola about her idea to write a book, she wholeheartedly agreed.

“I had big dreams, you know?” Susan says. “I thought, people who are diagnosed with HE have no information. They need to know from other patients what to expect, what that patient has gone through.”

Hashimoto’s Encephalitis: A Guide for Patients, Families, and Caregivers, now in its second edition, is still the only book about HE available. It includes stories of patient experiences along with interviews with prominent physicians who specialize in the disease.

In addition to the book, Susan and Nicola started a nonprofit patient organization to provide ongoing support and information for those affected by HE and other autoimmune encephalopathies. HESA (Hashimoto’s Encephalopathy/SREAT Alliance), provides both scientific and experiential information on living with HE (also known as steroid-responsive encephalopathy associated with thyroiditis [SREAT]; encephalopathy associated with autoimmune thyroid disease [EAATD]; and nonvasculitic autoimmune inflammatory meningoencephalitis [NAIM]).

HESA raises awareness and advocates for the HE community and raises funds to support research that patients hope will one day shed more light on the underlying cause of HE/AE and create new, more effective therapies. Last year, HESA joined together with other AE organizations to host a symposium to educate physicians and other healthcare professionals. (Recordings of these and other presentations are available on the HESA website.)

HESA’s support groups include two private Facebook pages, one specifically for teens. Susan and her medical advisory board also consult with individuals privately on everything from physician referrals to how to get insurance to approve IVIG therapy to sensitive issues such as incontinence.

Despite the fact that Susan’s career in business ended when she became sick, she’s busier now than she’s ever been. HESA is her labor of love.

“I will tell you, when one door closes, another door opens,” she says. “HESA has been a life saver to me. I still feel like I’ve got something to give, and I tell people when they’re feeling sorry for themselves, they need to find a purpose. Do not feel sorry for yourself. Do something. It will give you a reason to get up in the morning.”

One of the most effective therapies for autoimmune encephalopathy is IVIG. CSI Pharmacy is excited to welcome HESA and those with AEs into our family of care.

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Advocacy Patient stories

IG Shortage is Coming

Walter “Kip” Caro started noticing tingling, numbness, and pain in his feet back in 2007. Gradually these symptoms progressed up his legs and into his body to the point where he had to be hospitalized because his torso was affected and he couldn’t breathe. It took three years for doctors to diagnose him with chronic inflammatory demyelinating polyneuropathy (CIDP). In that time, Kip suffered permanent nerve damage in his feet.

For the last 11 years, however, Kip has been treated with intravenous immune globulin (IVIG), which has worked like a charm. He never has to worry about his symptoms, unless he can’t get his treatments every three weeks. If he doesn’t, as happened last June when there was a shortage and his infusion center couldn’t get immune globulin (IG) products from their distributor, his disease starts to relapse.

“It was scary,” he says of this experience.

“Over the years, we’ve met people said they could make a change to their treatment schedule, and their symptoms would not be affected,” says Kip’s wife Bonnie Joslin. “But we’ve learned, for Kip, his body just can’t do that.”

Kip feels lucky that Bonnie is such an advocate for him. By the time his infusion center called and told him they weren’t able to get his medication, Bonnie had already been reading about other patients’ experiences online. She immediately contacted Michelle Vogel, who administers a Facebook page for people who depend on IG therapy. Michelle, who also serves as vice president for patient advocacy at CSI Pharmacy, was able to get Kip hooked up with home infusions within a week.

“He was already starting to relapse,” Bonnie says. “But Michelle pushed it through, and Natalie Edwards in the insurance department worked to get approval. I know it wasn’t easy, but it was like a miracle happened.”

By early 2021, however, nearly all IG manufacturers expect to see shortages again. This time it’s because pandemic shutdowns earlier in the spring have decreased plasma donations. Plasma is the raw material from which IG and other protein therapies are made. The manufacturing process takes seven to nine months to create IG from donated plasma, so unlike last year’s shortage, this time we know it’s coming and can be prepared.

When IG products are in short supply, rationing will happen, Michelle says. “When the market tightens and we have shortages, what tends to happen is that certain sites of care like hospitals may stop treating outpatients. If they do treat outpatients, they will limit treatment to primary immune deficiency, Kawasaki disease, and transplant patients.”

That’s because supplies of IG are not universally distributed. Hospitals and infusion centers have contracts with certain manufacturers or distributors, so they can only get specific brands. Last year, patients like Kip who were served by these sites of care sometimes found their treatments delayed or dropped completely.

Specialty pharmacies like CSI Pharmacy that offer home infusion services, however, have access to more brands of IVIG as well as subcutaneous immune globulin (SCIG). In 2019, CSI Pharmacy was able to work with patients, their healthcare providers, and their insurance plans to allow them to continue IG treatment in the home.

At times this meant switching to a different brand of IVIG when certain brands were not available. Some patients even switched to subcutaneous (meaning under the skin) infusion after being on the intravenous (IV) form.

While changing to a different product can be scary for patients who have confidence in a brand of IG that is working well for them, please be assured that  a switch can be relatively comfortable if you work closely with your doctor and pharmacist. The pharmacist can find a brand that is close in formulation to your current brand, for example. If side effects become a problem, the infusion rate can be reduced and pre-medications prescribed. 

If you depend on IG therapy, now is the time to prepare. We suggest you have a conversation with your provider and current site of care.

  • Ask your provider what other brands are good options if your brand is in short supply, and ask your care site if they are able to obtain one of these brands if needed.
  • Ask the site of care if they will prioritize patients if there is a shortage. Will it be based on disease, IgG levels, and/or rationing product by the number of grams or frequency?
  • Ask how the site of care handled past shortages.

If it turns out that your site of care does not prioritize patients with your disease or they are unable to obtain your brand of IG, you may want to consider how important is it to you that you continue IG therapy. (Some patients feel comfortable skipping their treatment for a month or two if it means they don’t have to make changes.)

If you’re like Kip, however, and can’t function without regular IG infusions, you’ll need to think about what options are available to enable you to access this treatment. Are you willing to switch brands? Are you willing to move to home infusion? Are you willing to switch to SCIG?

If home infusion becomes your alternative, we urge patients to make that move now. Specialty pharmacies are more flexible and were less affected during the last shortage, but that may not be the case this time.

If you are a patient of a specialty pharmacy when this crisis hits, you may be able to get access to IG since they do not ration based on disease and have access to more brands. However, we do not know how the shortage will affect sites of care. 

“We want to see all patients have access to all brands in their preferred site of care,” Michelle says. “But we just don’t know what the impact is going to be. We expect this shortage will be across all manufacturers. Patients should understand that this is not going to be a perfect scenario. You may still run into hurdles like access to your preferred brand.”

CSI Pharmacy’s patient advocates are available to discuss your options related to IG therapy, regardless of whether or not you are our patient. If we can’t service your needs, we will gladly help you find other resources. No patient should suffer alone.

Webinar: Standards of Care for IVIG Therapy

COVID-19 has led to some changes in how some people are receiving their immune globulin (IG) therapy. This webinar, sponsored by Myasthenia Gravis Foundation of America, Inc., discusses what procedures you should expect during your infusions, both in the home and at the infusion center. Find out about the Do’s and Don’ts for infusions and how you can advocate for yourself to stay safe. Appropriate for all patients, family, and healthcare providers involved in IG therapy. Register now: https://myasthenia.org/Living-Your-Best-Life-With-MG/Wellness-Strategies/Wellness-Series

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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.”

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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

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Advocacy Health Information

What’s the Difference?

Plasma donations are down in recent months. Fewer donations now means a possible shortage of plasma products, such as IVIG, within the coming year. Becoming a plasma donor is one way those of us who are not on the front lines of the battle against COVID-19 can bring some good into the world.

But there are significant differences between donating plasma and donating blood. Most significantly, plasma donated at a blood bank or Red Cross facility will not be used to create immune globulin.

Here is an outline of other differences:

What’s the difference between donating blood vs. plasma?

Plasma Blood
Allowable frequency Twice a week with two days in between Once every 56 days
Donations needed to qualify At least two within a six-month period; prefer regular, ongoing donations One donation qualifies
Time it takes to donate 1.5 to 2 hours first donation; less than 1 hour for subsequent Less than 1 hour
Uses To produce life-saving therapies such as immune globulins, clotting factors, and albumin Primarily for transfusions in local hospitals
Donations needed to produce IVIG 250 to treat one autoimmune patient for one year NA – Blood and plasma donations at blood banks and hospitals are not used to make IVIG
Where can you donate? IPPQ-Certified plasma donation center specific to your location  https://www.donatingplasma.org/donation/find-a-donor-center Any AABB-accredited blood donation site http://www.aabb.org/tm/donation/Pages/Blood-Bank-Locator.aspx
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Patient stories

Stay Home

When Katherine Holt hears about people who are eager to end pandemic precautions she is outraged. Katherine is among those who are at highest risk from COVID-19 infection, not just because of her age: 76. She has chronic inflammatory demyelinating polyneuropathy (CIDP), an autoimmune disease that makes it hard for her to walk because of damage to the nerves in her legs.

For those like Katherine who live with autoimmune diseases or other chronic illnesses that put them at risk, one of their greatest fears is that people will start to relax coronavirus restrictions like social distancing and gathering in groups. They’re afraid this will increase COVID-19 cases and that vulnerable people like themselves will get sick.

“I just want to jump through the TV when I see people saying we don’t need to stay home,” she says. “It’s not time to lighten up, because it’s just going to make this pandemic longer, and more people will die.”

Katherine knows what she’s talking about. Until she retired, she worked most of her life as a nurse. She also started her career in the US Air Force. Between the two, she still feels a great deal of respect for authority and duty—an authority based on science and a duty to keep people healthy.

So Katherine is sticking to stay-at-home orders. She lives in Jonesboro, Arkansas with her sister Gloria and their four-legged family: four cats and two dogs. Katherine is grateful that her sister is so strict about making sure she is not exposed to coronavirus or other infections.

“In the beginning, my sister and I—she’s 67—looked at each other and we decided between the two of us I was the one at highest risk since I have CIDP,” Katherine says.

Gloria orders ahead and uses drive-through services at the grocery store and pharmacy. Anything that comes into the house sits in the garage for several hours before being brought inside. Then Gloria pulls on gloves and wipes everything down with alcohol or bleach before placing it in the pantry or refrigerator. In a fallback from Katherine’s days as a nurse, they even have a transition area between the outside (dirty) and the inside (clean) where they do the disinfecting.

Katherine had two doctor appointments scheduled during April, one with her PCP, the other with her neurologist. Both were routine checkups, and she was feeling fine, so she canceled them. She will call if she needs medication refills and reschedule when the pandemic precautions are lifted.

One thing she has not canceled is her IVIG therapy. She’s been receiving monthly treatments since 2008 and getting her infusions at home for about four years now. It’s the main thing that keeps her able to walk.

Katherine’s first infusions were done in a hospital. “I had to be there at 7 o’clock in the morning, and I was there all day. I got back home about six or seven at night, because they were giving it to me really slowly and checking all the vital signs and everything very frequently.”

When the hospital canceled her infusions several times in a row, she was getting a little desperate. She happened to have an appointment with her neurologist shortly after a representative from CSI Pharmacy had stopped by, talking about home infusion. The doctor put in the order, and three days later—on a weekend—Katherine was getting her infusion at home. Now with social distancing, home infusion makes even more sense.

“I think home infusion is the way to go,” she says. “It’s everything you could want. They made it all really easy. And I enjoy when they come, because finally I have another nurse to talk to.”

Ever the nurse, however, Katherine wants to educate the public about what it means to people like her for the country to flatten the curve.

“I just wish I could help other people understand how important it is to stay at home,” she says. “I’m praying people will see reason. If they draw on their good conscience, hopefully they’ll be able to say, oh, maybe we shouldn’t go back to business as usual just now.”