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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.

  • 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 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.

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Patient communities

Honoring Our Rare

As the shortest month of the year, February is always the rarest month. Because of this, the last day of February has been chosen as Rare Disease Day. This year, however, is rarer still, because it’s leap year, the time when an extra day is added to the calendar: February 29. Which makes it an even better time to honor our rare disease patients!

Rare Disease Day is a time when advocates take to the soapbox to raise awareness for the more than 6,000 rare diseases that have been identified worldwide. More than 300 million people are affected by these diseases at some point in their lives, which adds up to about the population of the United States!

CSI Pharmacy works with a number of rare disease organizations to bring awareness and education. Among these is Myositis Support and Understanding. Founder Jerry Williams was diagnosed with polymyositis in 2003. He is a tireless (despite the fatigue of his illness) advocate for those living with myositis diseases.

Like many who live with a rare disease, Jerry’s myositis journey has been long and challenging. It started with muscle pain, severe weakness, muscle wasting, and fatigue. Initially, when they couldn’t figure out what was going on, doctors told him these symptoms were all in his head. Even after being identified as myositis, his disease has resisted treatment and been riddled with complications. He’s spent long stretches of time in the hospital over the last 17 years with flares, infections, and other complications. Myositis has even forced him to end his career in the banking industry and go on long-term disability.

“Leaving the workforce was a blow,” Jerry says. “I thought, what am I going to do? I knew I needed a purpose.”

Jerry set to work learning about this autoimmune disease of the muscles. In addition to reading everything he could, he looked around for others who had myositis. He knew their first-hand experiences would be at least as helpful as the information from medical sources.

Through this process, Jerry recognized there was a need for more patient-focused services and programs for those who live with myositis diseases. In 2010, he started a Facebook support group called “Polymyowhat: Understanding Myositis.” As the group attracted members with the several other forms of myositis in addition to polymyositis, he changed the name and eventually formed the nonprofit Myositis Support and Understanding (MSU). The all-volunteer organization is run completely by those who are directly affected by myositis, including patients and care partners. Jerry serves as President and Executive Director.

On this the rarest day of the year, Jerry’s message to others who live with rare diseases is never give up.

“Don’t accept the status quo,” he says. “When you’re diagnosed with a disease like myositis that limits your life, you have to find new ways to live your passion.”

Jerry has found his passion in helping to empower others who live with myositis to advocate for their best life. MSU now has two websites, several Facebook support groups, and live online video support sessions. MSU operates the official Myositis Support Community on the Inspire health support platform. They also provide educational programs, a smartphone app for tracking symptoms and treatments, clinical trials opportunities, and a financial assistance program.

“Living with chronic illness has also offered me some wonderful opportunities,” Jerry says. “It’s amazing the relationships I have built. And I never would have imagined working with a nonprofit as part of what I do and who I am. Now I can’t imagine not doing it.”

CSI Pharmacy is pleased to support the efforts of MSU and other patient organizations that are helping rare disease patients stay engaged with the world. We provide therapies uniquely suited to rare diseases, offering these therapies to more than a dozen patient communities. This month we are thrilled to honor those who daily cope with the challenges of the following rare diseases:

  • Chronic inflammatory demyelinating polyneuropathy (CIDP)
  • Guillain–Barré syndrome (GBS)
  • Huntington’s disease
  • Immune thrombocytopenia (ITP)
  • Multifocal motor neuropathy (MMN)
  • Multiple sclerosis (MS)
  • Myasthenia gravis (MG)
  • Myositis
  • Pemphigus and pemphigoid
  • Primary immune deficiency diseases (PIDD)
  • Stiff-person syndrome (SPS)
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CSI Pharmacy stories

Therapies Unique as Fingerprints

When James Sheets and his partners decided to create a business that focused on home immune globulin therapy, they didn’t really know what to call it. The traditional dispensing pharmacy they already operated had a name: North Heights Pharmacy. But they felt this local focus would limit this new venture, which they expected to expand beyond their current Texas/Arkansas/Louisiana area.

“When I was presented with the challenge of coming up with a name, I didn’t really have any ideas,” James says.

At the time in late 2013, specialty pharmacies were just starting to emerge from other fields of pharmacy, so James decided “specialty” would be part of the name. He also wanted the word “clinical” to be in there, because with a team of outstanding pharmacists with decades of infusion experience, he and his business partner Barry Buls felt it was their commitment to providing comprehensive clinical services that set this new business apart.

Then one night in the middle of the night James woke up from a dead sleep with a picture of the whole plan.

“I sat up in bed and said, ‘Wait a minute. We’re going to call this thing Clinical Specialty Infusions, and we’ll use the name CSI Pharmacy,’” he says. “People will remember it, because they will think of the TV show Crime Scene Investigation.”

The logo would be a thumbprint overlaid with a magnifying glass, also tying in the idea of the detective. And the motto would be “Individualized therapies designed to be as unique as you,” because, like one’s fingerprint, CSI Pharmacy’s treatments are designed for the specific needs of each patient.

CSI Pharmacy is now licensed in 39 states and the District of Columbia with plans to acquire licenses in all 50 states. North Heights Pharmacy is still part of the business, filling retail prescriptions in Texarkana, Arkansas.  The headquarters, which includes an infusion center, are based at a second physical location in Wake Village, Texas. Soon CSI plans to expand their individualized care by acquiring new bricks-and-mortar locations in at least two additional states.

“We are truly focused on making a difference in people’s lives,” James says. “And I’ve always said if we take care of patients, if we are there for the prescribers, and if we take good care of our employees, the rest will take care of itself.”

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CSI: A Special Specialty Pharmacy

“I’d always had a dream of owning a little mom-and-pop pharmacy,” says James Sheets, CEO of CSI Pharmacy. He’d had a number of jobs working in both big box pharmacies and smaller shops in and around his hometown of Texarkana, Texas, and he preferred a small, local business where he and his staff could get to know their customers.

In 2013, James’s dream came true when he and two other pharmacist friends, Barry Buls and Mark McMurry, had the opportunity to partner up and purchase North Heights Pharmacy, a shop that had been in business in Texarkana since 1975.

North Heights was doing some retail sales, but they also provided medications for some local hospice services. They also did compounding, mixing up specialized medications for individualized patient needs. The plan, when James took over as chief pharmacist, was to build on these services, with outstanding customer service as their main goal.

In a previous job, however, James had started a successful home infusion program. The service provided treatments such as intravenous antibiotics, cardiac medications, and intravenous nutrition. It was a way for patients to receive these intensive treatments at home, rather than having to go to the hospital or stay in a nursing home.

He wasn’t really trying to get back into home infusion services at North Heights, but one day James got a call from a local neurologist who had several patients who were desperate for someone to provide intravenous immune globulin (IVIG) therapy in the home. These were people with chronic inflammatory demyelinating polyneuropathy (CIDP) who had been cut off from this service because the big national pharmacy chain that once provided it had decided it wasn’t getting paid enough by the patients’ health insurance.

“These were patients who were stable on IVIG, who had been doing well for years, yet they were losing their home infusion services,” James says. “Naturally we wanted to take care of them. Some of these patients we knew from our previous experience, so we already had a personal relationship with them.”

So James and his partners decided to go all in with home infusions, especially IVIG. They made some infrastructure changes to add the necessary facilities at North Heights, and they hired Tracy Knox, a nurse who specializes in infusion therapies, to work just with these patients. They also hired several other staff members who were experienced with the processes necessary to administer infusions, including pharmacy technician Natalie Edwards, IV technician Jet Richardson, intake coordinator Vanessa Noble, and Abe Cardenas, who serves as warehouse manager.

The pharmacy also needed a new name, one that more accurately reflected this new focus.  Clinical Specialty Infusions was born and immediately became CSI Pharmacy.

“What really sets us apart is that we’ve developed clinical programs around the different types of patients we serve,” James says.

In addition to people with CIDP, CSI also has patient communities for those with myositis and myasthenia gravis, both rare, autoimmune neuromuscular diseases. A new patient community is also developing with people who live with pemphigus and pemphigoid, which are rare autoimmune diseases that affect the skin and/or mucus membranes.

In caring for these patients, James and his team don’t just take an order from a physician and give the customer the medication. CSI hires or contracts with infusion nurses who know how best to administer immune globulin and how to monitor the patient during and after the treatment. More than that, though, they work with the whole CSI team, including physicians, pharmacists, patient advocates, and insurance staff to be sure the patient receives the individualized care they need.

More importantly, because staff spend so much time with patients, both administering the medications and working to get insurance coverage for these expensive treatments, they get to know them as friends not just patients. Staff and patients exchange personal stories, check in with each other, and share the success when the patient’s condition improves.

Infusion nurse Tracy Knox, for example, has been working with James since the beginning. “I can see the difference I’ve made in people’s lives, and I like that,” she says. “I’ve been doing infusions for this one patient for many years now. She used to have to use a wheelchair, but now I see her in Walmart and she’ll say, ‘Look! I can walk with a cane now!’”

Over the past few years, CSI has grown from a small, hometown pharmacy into a thriving nationwide specialty pharmacy with two physical locations and plans for more and a mission to make sure every patient receives the care she or he needs regardless of how much they get paid for it.