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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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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.”

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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.”

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Health Information

Telemedicine How-to

As coronavirus control measures keep us at home, many in our patient communities may be worried about how they can access needed health care. In addition to symptoms that might be COVID-19, people still need ongoing care for their myositis, myasthenia gravis, CIDP, and other chronic conditions even during the pandemic. And of course there will still be concerns about injuries, tick bites, allergies, and other everyday needs.

Fortunately, telemedicine is emerging as a way for patients to get the care they need without having to visit the doctor’s office, urgent care clinic, or emergency room. During the COVID-19 crisis, regulations and payment policies are being relaxed to allow access to care remotely, so you don’t have to risk exposure to coronavirus infection. Remote visits allow you to discuss your healthcare issues in real time with your healthcare provider by phone, email, video chat, or through your provider’s patient portal.

If you contact your provider and he or she recommends a virtual visit, here are some ways you can prepare ahead of time so you can make the most of this opportunity:

  • Take care of the routine requests. If you need medication refills or paperwork for your employer or insurance plan, you can ask the office staff for this over the phone or manage it through the patient portal. You may not even need a visit with the provider for this.
  • Check with your insurance plan. Many insurance plans are providing coverage for telemedicine services. It’s best to give them a call ahead of time, however, just to be sure your visit will be covered.
  • List your medical concerns. Write down the two or three issues you want to be sure to discuss during the virtual visit, so you don’t forget the important things. (It’s a good idea to do this with in-person visits too.)
  • List your medications. Write down all the medications—including over-the-counter meds and supplements—that you are currently taking. Include the dose and how often you take them. And be sure to mention anything you take “as needed,” such as pain medications and antacids.
  • List your symptoms. Write out what symptoms are giving you trouble, when they started, how they have changed, what seems to trigger them, and what seems to make them better.
  • Send photos. Skin issues, such as rashes, bruises, moles, lumps, and insect bites can be “examined” by the provider in a picture. Be sure the image is in focus and you have good lighting when you take the picture. If a rash is spreading, you can take a series of photos over several hours or days, drawing a circle around the area with a pen. Be sure to note the date and time. Ask the staff when you make the appointment how they prefer you to send these images: email, text, or through the patient portal.
  • Organize your data. If you have been monitoring symptoms, such as blood pressure, blood sugar, weight (to identify water retention), or temperature, have these numbers organized and available. It’s also a good idea to have this equipment available during the visit so you can take these measurements then too.
  • Be ready to talk. Be prepared to answer the phone at the time of the appointment so you aren’t playing phone tag. Find a quiet place with good cell phone reception so you and the provider can both hear well.
  • Know your equipment. If you are using video applications, be sure you know how the technology works ahead of time. You may even want to test out the camera and microphone on your device ahead of time.

Not all issues lend themselves to telemedicine visits. Emergency situations, such as a heart attack or stroke, cuts or lacerations, or broken bones that require x-rays, splints, or casts need to be handled at the emergency room. Telemedicine also won’t work for procedures, such as PAP smears, mammograms, EMG studies, and cardiograms (unless you have special equipment that can collect and transmit an EKG).

Generally, virtual visits work best for simple issues and follow-up consultations that don’t require hands-on examination or in-person observation. Your provider’s office staff can help you decide if a telemedicine visit will work or if your concern might be better handled in person.

If you do need to go to the office or emergency room, you can be sure that everything possible is being done to prevent the spread of coronavirus. Most providers screen patients on the phone to be sure they don’t have symptoms of infection. If they do, those patients are usually seen outside in their car, so they don’t bring the virus into the office.

Equipment and clinic surfaces are disinfected thoroughly and frequently. Healthcare providers usually wear as much personal protective gear as they have available, including gloves, gowns, masks, eye protection, and shoe coverings. You should also wear a mask whenever you go anywhere other people may be nearby, including to a medical facility.

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Self-care as We Self-distance

Creating opportunities to treat yourself with kindness is one of the most important things you can do when you live with a chronic illness. But what happens in this time of social distancing when the gym is closed and you can’t exercise your way out of the doldrums? How do you share your normal frustrations when getting together with friends means putting yourself at risk for coming down with a deadly virus?

Even when you’re stuck at home, there are lots of things you can do to take care of yourself. Here are a few suggestions. Please feel free to add your own ideas in the comments section.

  1. Take a walk. Exercise is just as important to mental health as it is to physical health. Get outside and enjoy the fresh air. Notice the chatter of birds and the beautiful sunset. You can even take a friend or neighbor along. Just stay at least six feet away from each other.
  • Organize virtual get-togethers. Being in touch with friends and family is even more important now when we’re isolated and worried about getting sick. Luckily video conferencing is not just for meetings anymore. Do coffee, lunch, or happy hour together with friends. Plan a virtual game night. FaceTime often with family and friends. Just be sure to stay in touch with those you love.
  • Do something you love. Is gardening your passion? Does painting or drawing help you to relax? Is that stack of books still sitting next to your bed? What about that recipe you’ve been wanting to try? Now is the time to dive into all those joys that you’ve been too busy for in the past.
  • Get enough sleep. Now more than ever it’s important to get the sleep you need. For adults that means seven to eight hours every night. If you have trouble falling asleep or staying asleep, try turning off the electronics about an hour before bedtime. Fill that time with something relaxing, like a warm bath or some light reading.
  • Express yourself. Did you know that singing and dancing release endorphins? These are the feel-good hormones your body produces to help you cope with stress. Laughing also releases endorphins, and guess what? You can get yourself into a serious giggle fit just by pretending to laugh. It’s the ultimate in fake it till you make it!
  • Be mindful. Practices such as meditation and yoga have been shown to relieve stress and improve mental health. Take a few calming breaths now and then. List three things you are grateful for every day. Sit quietly and still your mind for 15 or 20 minutes. Find a yoga video on YouTube.
  • Eat right. Now is not the time to binge on chocolate cake and Doritos. It’s better to stick to healthy eating. Include lots of colorful fresh vegetables and fruits, healthy fats like olive oil, plant-based proteins like beans and nuts, and whole grains like quinoa and brown rice. It’s best to avoid fast foods, processed foods, and sodas. A bit of dark chocolate and even a glass of red wine can be good for you.

As always, check with your physician before starting a new exercise routine or dietary changes.

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Virus Prevention 101

We are all becoming much more educated about viruses these days. Here is a basic rundown on the biology of this microorganism that will help dispel some of the myths about this invisible threat and help control its spread.

  • All viruses—including coronavirus—are not living organisms. They are a protein molecule (RNA) covered by a protective layer of lipid (fat). When virus molecules are absorbed by the cells lining the eye, nose, or mouth, they are like parasites. The RNA is able to replicate (multiply) inside the cell and become aggressive in the body.
  • Since a virus is not a living organism but a protein molecule, when it lands on non-biological surfaces, it is not killed but decays on its own. The disintegration time depends on the temperature, humidity, and type of material where it lies.
  • The virus is very fragile; the only thing that protects it is a thin outer layer of fat. That is why any soap or laundry detergent can easily destroy it. The foam cuts through the fat, which is why you have to scrub vigorously—20 seconds or more—and make a lot of foam when you wash your hands. By dissolving the fat layer, the protein molecule disperses and breaks down on its own.
  • Heat melts fat. This is why it is best to use water hotter than 77 degrees Fahrenheit for washing hands, clothes, and anything that has come in contact with the virus. In addition, hot water makes more foam and that makes it even more effective.
  • Alcohol or any mixture with a concentration of alcohol over 65% dissolves any fat, especially the external lipid layer of the virus.
  • Any mix with one part bleach and five parts water directly dissolves the virus protein by breaking it down from the inside.
  • Oxygenated water (peroxide) is effective long after soap, alcohol, and chlorine, because peroxide dissolves the virus protein. But peroxide damages skin if used undiluted, and it is not effective if you dilute it.
  • ANTIBIOTICS DO NOT WORK. The virus is not a living organism like bacteria. Antibiotics (bactericides) cannot kill viruses.
  • Never shake used or unused clothing, sheets, or cloth. Shaking the fabric or using a feather duster on surfaces releases the virus molecules into the air where they can float for up to 3 hours and lodge in your nose.
  • Virus attached to a porous surface disintegrates at different rates depending on the material:
    • Fabric and porous surfaces: 3-6 hours
    • Copper and wood: 4 hours
    • Cardboard: 24 hours
    • Metal: 42 hours
    • Plastic: 72 hours
  • The virus molecules remain very stable in cold air, including air conditioners in houses and cars. They also need moisture and darkness to stay stable. Therefore, the virus will degrade faster in dehumidified, dry, warm, and bright environments.
  • UV light (such as sunlight) shining on any surface that may contain the virus will break down the virus protein. Sitting objects in the sun can disinfect them. Be careful, though: UV light also breaks down collagen (which is protein) in the skin.
  • The virus cannot pass through healthy skin.
  • Vinegar is not a useful cleaning solution, because it does not break down the protective layer of fat.
  • No alcoholic beverages are effective cleaning solutions. The strongest, vodka, contains only 40% alcohol, and you need 65%.
  • The more confined the space, the more concentrated the virus can be in the air. The more open or naturally ventilated, the better. Outdoor spaces are best.
  • You must wash your hands before and after touching your face, nose, or mouth as well as after touching food, locks, doorknobs, switches, remote control, cell phone, watches, computers, desks, TV, credit card pin pads, and after using the bathroom.
  • Stay hydrated. Drinking warm water is best. Try not to drink liquids with ice.
  • Use moisturizer on your hands, because your skin gets dry from so much washing. Virus molecules can hide in the micro cracks of dry skin. The thicker the moisturizer, the better.
  • Keep your nails short so that the virus cannot hide under there.
  • Wearing a mask in public can decrease the spread of coronavirus. A mask will keep infected droplets from landing on your nose or mouth where they can infect you.
  • According to the Centers for Disease Control and Prevention (CDC), the spread of COVID-19 can be reduced when masks are used along with other preventive measures, such as social distancing, frequent handwashing, and cleaning and disinfecting frequently touched surfaces.
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CSI Operations during COVID

During the coronavirus crisis, CSI Pharmacy wants to assure our patients that we are doing everything we can to make sure that you get your infusions in a safe and timely manner.

Coronavirus Screening

Until further notice, all patients will be screened for exposure and signs of infection before a scheduled infusion. If you have been exposed to someone who has COVID-19 or develop symptoms of cough or fever, please inform the pharmacy or your nurse. CSI Pharmacy nursing staff will determine on an individual basis, possibly in consultation with your provider, if and how to proceed with care.

In addition, all nurses, whether employed directly by CSI Pharmacy or working on contract, will be screened for exposure and signs of infection on a regular basis. Nurses who have been exposed or develop symptoms will not be permitted to enter a patient’s home or provide care.

At the pharmacy, we also screen personnel, and some of our staff are working from home. Those who pack medications use gloves and spray materials with alcohol to disinfect them. This includes a wellness packet, which includes a thermometer and a small bottle of hand sanitizer, that we are sending to our home infusion patients.

Patient Access

Our number one goal is to make sure all patients get their infusions. Ideally, we also want to be able to keep you on your regular infusion schedule. There may be times, however, depending on how our nursing staff is affected by the virus, when we may need to ask you to be flexible in scheduling your infusions. We ask for your patience during this crisis, knowing that our highest priority is protecting you, our patients.

Lab Work

Social distancing policies may make it difficult for you to get your routine lab work drawn or sent for analysis. Some laboratory facilities in the community may be closed or operating on a reduced schedule. Delivery services, such as FedEx, are also not picking up specimens on weekends, creating a time delay that makes samples unfit for analysis.

CSI Pharmacy will work with patients and health care providers to obtain or schedule blood tests in a timely and safe manner that will not interfere with your infusion schedule. Again, we ask for your patience.

If you have any questions or concerns, we encourage you to call CSI Pharmacy 24/7 at 833-569-1005.

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COVID-19 and Plaquenil

A medication used by CSI Pharmacy patient communities has become a hot topic in the COVID-19 news. Hydroxychloroquine (HCQ, brand name Plaquenil) has been identified as a possible treatment for COVID-19. Plaquenil is normally used to treat or prevent malaria. It is also used to treat dermatomyositis, rheumatoid arthritis, lupus, and other autoimmune conditions.

At a White House press briefing last week, President Trump announced that Plaquenil along with its chemically close cousin chloroquine (CQ) are showing early positive results in treating and preventing coronavirus infection. The director of the National Institute of Allergy and Infectious Diseases Dr. Anthony Fauci clarified this, saying, as of now, these are only anecdotal results and that more scientific evidence is needed to support this use.

Since this announcement, supplies of Plaquenil, which normally are stable, have gone out of stock with some wholesalers because of over-prescribing and panic buying. It is important to note, however, that manufacturer, including Bayer, Mylan, Novartis, and Teva, report that they are stepping up production of HCQ in an effort to meet increased demand.

There are currently no clinically proven therapies for the treatment or prevention of novel coronavirus. Scientists at the NIH and elsewhere are testing CQ and HCQ along with other drugs to determine their safety and effectiveness against the virus. In the meantime, some patients worry that depleted supplies will make it impossible for them to refill prescriptions for Plaquenil, a drug they’ve been using for years to control their symptoms.

“Many patients with rare autoimmune diseases rely on Plaquenil, and we are working to be sure they are not adversely affected by over-prescribing,” says CSI Pharmacy CEO James Sheets.

Since CQ and HCQ became big news, a number of steps have been taken to ensure that those who need these drugs can get them. Chief among them is the fact that their use in COVID-19 should be limited to compassionate use, because it is not an FDA-approved treatment. That is, only those who are severely ill and have no other recourse should be treated with these drugs. These are unprecedented times, however, and information continues to evolve very quickly.

In addition, pharmacy boards in several states have enacted legislation limiting the distribution of these drugs. These include Idaho, where CQ and HCQ can only be prescribed for a diagnosis “consistent with the evidence for their use.” And unless the patient is being treated for a chronic condition, such as dermatomyositis, they will only be dispensed a 14-day supply.

“Our pharmacists at CSI Pharmacy continue to monitor the supply and availability of these medications,” James says. “Many pharmacies do have Plaquenil in stock. Until supplies increase, though, we may only be able to provide a limited supply.”

Medical disclaimer: Every effort has been made to ensure that the information in this article is accurate, up-to-date, and complete, but no guarantee is made to that effect. This information is not a substitute for, the expertise, skill, knowledge, and judgement of healthcare practitioners in patient care. CSI Pharmacy assumes no responsibility for any aspect of healthcare administered with the aid of this information. If you have questions about the substances you are taking, check with your doctor, nurse, or pharmacist.