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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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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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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 Pharmacy 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 24/7/365 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.

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Concerns about Coronavirus

Those who rely on specialty therapies like IV immune globulin (IVIG) infusions are understandably anxious about the impact of coronavirus containment measures currently being implemented across the country. CSI Pharmacy’s advocacy team have heard from a number of patients, especially those who get their treatments at infusion centers or hospital clinics, who are worried about the possibility of being exposed to the virus in these facilities.

It is extremely important that you get your IVIG treatments, especially during this time when you need your immune system to be as effective as possible. Patients should not postpone or cancel a regularly scheduled infusion.

We urge you to call your infusion site to be sure they are operating as usual. You can also check in with your physician to ask their opinion about coronavirus containment at your facility.

If, however, you can’t or don’t want to leave home or your usual infusion site is closed, home infusion may be an option. CSI patient advocates are available to help you sort out these access options, including continuing at your current site. If you decide you’d like to transfer to home infusion, we can also help you navigate this process with your physician and your insurance plan.

Regardless of where you decide to have your infusions, CSI Pharmacy wants to be sure no one goes without the treatments they need during this public health crisis. Please reach out to our advocates at [email protected] you have questions or need help accessing care.

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Avoiding Infection

Many of our patients have a compromised immune system that puts them at greater risk for developing infections like colds, flu, and coronavirus (COVID-19). Here are some ways you can avoid getting sick:

  • Avoid crowds.
  • Wash your hands frequently with lots of soap. Scrub—including your thumbs—for as long as it takes to sing “Happy Birthday” or the ABC song twice.
  • Use liquid soap in a pump bottle rather than bar soap.
  • Do not share towels, napkins, or other personal items.
  • Use hand sanitizer with at least 60% alcohol often.
  • Do not touch your face, eyes, and nose. If you must, use a tissue.
  • Clean surfaces that others have touched—shopping carts, doorknobs, handrails, bathroom fixtures, kitchen counters—with bleach or alcohol wipes.
  • Avoid shaking hands, if possible. A quick fist bump or a little bow are preferable ways to greet others.
  • Have a couple weeks supply of your medications and groceries on hand so you don’t need to go to the store so often.
  • Wearing a mask is only helpful if you are sick so you don’t infect others. Masks are recommended for those who are sick and care for an elderly person or someone who has a compromised immune system.

If you develop a fever or cough:

  • Call your doctor but don’t rush off to the office, emergency room, or urgent care center where you might infect others. According to the CDC, you should stay home if you are sick.
  • Experts at the Immune Deficiency Foundation say treatment at the hospital or doctor’s office is the same as you can do at home: drink fluids, treat fever with ibuprofen or acetaminophen, stay in bed, and get lots of TLC. And if you have an inhaler, use it if you need it.
  • Of course, if your symptoms become worse and you are unable to control them (for example shortness of breath that doesn’t resolve), by all means go to the ER.
  • If you need to go to the ER, call ahead to let them know you are on the way so they can be prepared to isolate you from others.

Complete information about COVID-19, its status around the world, and how individuals and communities can navigate the challenges can be found on the Centers for Disease Control and Prevention website

The Immune Deficiency Foundation offers a very helpful video and other resources.

If you have questions, you can call CSI Pharmacy 24/7/365 at 883-569-1005.