Tag: CIDP

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Health Information

Sleep on It

sleeping peacefully with peace of mind that CSI Pharmacy is doing all they can
Photo by bruce mars on Unsplash

Getting a good night’s sleep does more than just keep you alert during the day. Proper sleep is critical to good mental and physical health. Of course sleep helps you concentrate and think more clearly. But research shows that a good night’s sleep is also associated with other positive health outcomes.

Improved brain function is the most obvious benefit of getting enough sleep. In addition to helping you focus better and think more clearly, studies show that those who sleep well are more productive and perform better on mental tasks. Memory improves with adequate sleep, which helps you learn better, improves problem-solving, and allows you to form new insights better.

Healthy sleep patterns, especially during middle age, may also help you avoid dementia as you get older. Mental health issues, such as depression and even thoughts of suicide, are associated with poor sleep quality and sleep disorders, such as sleep apnea and insomnia.

The benefits of bedtime are not limited to the brain, though. Studies show that those who sleep well perform better on physical activities as well as mental ones. Athletic performance, for example, was shown to improve with more sleep. In contrast, functional limitations, such as walking, grip strength, and ability to perform independent activities, was worse for older women who slept less well.

Good quality sleep is essential for other factors associated with chronic illness, too. For example, not getting enough sleep is one of the strongest risk factors for obesity. Adequate sleep helps regulate hormones and other factors that affect appetite and blood sugar (an important factor for those with diabetes), which helps you maintain better weight control.

Getting enough sleep also improves immune function and decreases inflammation. So sleep may be an important part of your therapy if you have an autoimmune disease like myositis, CIDP, myasthenia, and others. Better sleep may also lower your risk for developing serious conditions like heart disease and stroke.

So how do you get a good night’s sleep? Good sleep hygiene is all about putting yourself in the best position to fall asleep easily and sleep well throughout the night. Here are some tips for making that happen:

  • Stick to a consistent sleep schedule. Go to bed at the same time every night, and wake up at the same time every morning, even on weekends. Make sure this schedule allows for 7-9 hours of shuteye.
  • Unwind with a relaxing bedtime routine. Give yourself 30-60 minutes before tucking yourself in to leave behind the busyness of your day. Take a warm bath, meditate, write in your journal, read…anything that helps you de-stress and feel drowsy. Anything, that is, except activities that involve a blue light-emitting screen.
  • Make your bed a device-free zone. Phones, computers, and e-reader devices emit a blue light that reduces melatonin levels in your body, making it more difficult to fall asleep. When you use them before bedtime, they can keep your brain more alert, which also makes it harder to fall asleep. Your phone’s dings, pings, and rings and the light that pops on when notifications come through are also disturbing to your sleep. Best to turn the phone off at night.
  • Exercise every day. Thirty minutes of exercise a day not only improves your health and physical functioning, but it can improve sleep quality as well. Being active outside, where you are exposed to natural light, can also help to regulate your sleep cycle. It’s best, however, to avoid vigorous exercise within an hour or two of bedtime.  
  • Limit caffeine late in the day. Caffeine’s effects can last up to seven hours after your last cup of coffee, making it more difficult to fall asleep.
  • Make your sleep space cool, comfy, dark, and quiet. Bedroom temperatures are better when they’re lower than the rest of the house (between 60°F and 67°F). A comfortable mattress, pillows, and bed linens also go a long way in helping you fall asleep and stay asleep. And keep the room dark and quiet (use earplugs if you must) to keep you from waking up.
  • Manage your stress before you go to bed. Try not to bring your worries to bed with you. Write down what’s bothering you or make a to-do list for tomorrow so these concerns don’t keep you up at night. Meditation or other relaxation techniques can also calm your mind.
  • Save your bed for sleep and sex only. It’s best to avoid working, talking on the phone, watching TV, or other activities when you’re in bed. That way your brain is conditioned to expect to fall asleep when you climb under the covers. Even reading can keep your brain on alert, so it’s better to read in another comfy spot before slipping into bed.
  • Avoid tossing and turning. If you have trouble falling asleep, especially if you wake up in the middle of the night, don’t just lie there. If it takes more than 20 minutes to fall asleep, try getting up and doing something relaxing—drink a cup of herbal tea, read a book (on the couch, not in bed), meditate—until you feel tired.
  • Limit daytime naps. Napping during the day can make it harder to fall asleep and stay asleep during the night, especially for older people. If you must nap, don’t do it late in the day, and limit it to 30 minutes or less.
  • Prioritize sleep. While it’s tempting to work, study, socialize, or exercise late into the night, burning the midnight oil is not a good idea. It’s important to treat sleep as a priority in the same way you do eating three healthy meals every day.
  • Avoid these things: consuming alcohol in large quantities, eating a large meal late in the day, or smoking at any time. All of these activities cause sleep disruption.

Falling asleep and staying asleep can be a problem for some, especially when you’re taking certain medications, such as prednisone. If you’ve tried these tips but sleep continues to be a problem, discuss this with your doctor. He or she can help you figure out whether an underlying medical condition is causing your sleep issue and work with you to solve it.

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Advocacy Patient stories

Buyer Beware

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The cost of health insurance had been a struggle for Diane Steele for years. Even the plans offered by her husband’s employer were too expensive when they had children at home. For a while, the family had to go without insurance. When Diane learned about health share programs, she saw this as an affordable way to protect her family.

Health share programs (sometimes called medishare or healthcare sharing ministries) are faith-based programs in which members pay a monthly “share” (notably not called a premium), which is pooled together with other members to pay for approved medical expenses.

While health share programs have been around for decades, because they are significantly less expensive than traditional health insurance, their popularity has increased in recent years as healthcare costs and insurance rates have skyrocketed. Part of the reason they are less expensive is they are not actual health insurance.

Program guidelines for what will be covered are often limited and may be determined by religious beliefs rather than medical need. Some health shares, for example, specifically exclude things like birth control, addiction treatment, or conditions related to smoking or alcohol abuse. Health share programs may even require members to sign a statement of faith, and some require verification of regular church attendance.

Because these programs have a religious affiliation, they also are not subject to mandates imposed by the Affordable Care Act (ACA), such as coverage for preexisting conditions and no lifetime caps on coverage. Most also specifically exclude drug coverage, especially for long-term treatment of chronic conditions such as diabetes or heart disease. Instead, members are steered to prescription discount cards like GoodRx and NeedyMeds to help pay for insulin and high blood pressure medication.

“We went with the health share because of the cost, and because we liked the idea of helping other people,” Diane says. “The funds go into a universal plan, and as people need it and qualify for it, they cover your costs. The only thing is you have to get approval up front for any kind of major outlay.”

Having to get approval for major healthcare expenses seemed like a small concession for Diane and her family, one that seemed routine when her husband needed major open-heart surgery a few years ago. The health share covered all of the expenses of that hospitalization with little hassle.

When Diane was diagnosed with chronic inflammatory demyelinating polyneuropathy (CIDP) in 2017, however, she discovered limitations that were much more of a hassle. CIDP is a rare disease of the nerves and muscles in which inflammation causes disabling numbness, weakness, and pain in the legs and arms. It is a chronic condition that often requires a lifetime of treatment.

“I was so sick,” Diane says. “I couldn’t walk. I couldn’t drive. I was basically in a wheelchair most of the time. And I was gradually getting worse and worse.” 

Among the medications her neurologist prescribed for the condition was Gammagard, a form of intravenous immune globulin therapy (IVIG). This treatment, derived from donated human plasma, is very expensive, but it’s also very effective for a wide variety of autoimmune conditions like Diane’s. IVIG treatments did allow Diane to return to a more normal life, one that no longer includes a wheelchair, but the health share refused to pay for it.

“I worked and worked with the health share,” Diane says. “I talked to all kinds of people over there, and often had to ask for the supervisor’s supervisor. It was so complicated. They didn’t even know what Gammagard was.”

The health share required Diane to have a number of different tests to prove the diagnosis. They also required her to try other, less expensive medications (a process known as step therapy) to show that these treatments didn’t work for her condition. And they wouldn’t approve it just based on the doctor’s prescription. Her neurologist had to send them an extensive written report to justify the scientific basis for using IG for Diane’s disease.

To be fair, Diane’s experience with the health share program was not unique. Even traditional health insurance companies require preapproval for expensive treatments like IG therapy. Many also impose limitations on doses or frequency. There is often a large copay, and some will completely deny coverage for the treatment, especially if it is being prescribed off label (for a treatment that is not approved by the FDA for a particular condition).

But even after jumping through all these hoops, the health share only approved the treatment for forty-five days as a test to see if it would work. And the dose they allowed was also lower than what the doctor prescribed. Even when it did prove to be effective, the health share refused to cover the cost.

After the forty-five-day trial period, Diane worked with her specialty pharmacy to access the life-saving treatments she needed. They helped her apply for a special patient assistance program through the manufacturer that provided the medication for free. The specialty pharmacy then provided the nursing services and supplies at no cost. They also helped her apply for Social Security Disability, which would allow her to enroll in the more comprehensive benefits available through Medicare.

Diane’s story is a cautionary tale that underscores the need to know what you’re buying when you purchase healthcare coverage. All plans have restrictions and limitation. But when a plan is so inexpensive compared to the norm, you have to be especially careful to understand what they will pay for and be sure it covers the care you need.

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Advocacy IG Therapy

Don’t Take No for an Answer

The agency licenses, permits, and oversees pharmacists and pharmacies, as well as the distribution system where there is the sale, delivery, or distribution

Karen has struggled for many years with intense pain and muscle weakness, symptoms of chronic inflammatory demyelinating polyneuropathy (CIDP). This rare nerve disease causes gradually increasing loss of sensation, numbness and tingling, intense pain, and weakness in the extremities. For the last two years, though, Karen has been doing well with monthly infusions of intravenous immune globulin (IVIG) therapy.

Now, however, Karen is terrified that this life-saving treatment will be yanked away from her, not by her doctors, but by her health insurance company.

Karen receives IVIG infusions at home through an independent specialty pharmacy. But after every monthly treatment, she receives a letter from her insurance company’s pharmacy benefits manager (PBM) telling her that her plan requires that she obtain this medication from their preferred specialty pharmacy.

“We’ve just been living with this every month,” Karen’s husband David says. “It’s so nerve racking. We’re always afraid that they will deny coverage and we will get a bill for thousands of dollars.”

This scenario is happening more often lately, according to James Sheets, CEO of CSI Pharmacy, a small, independent specialty pharmacy that caters to patients who use IVIG. Between five and ten percent of new referrals to his pharmacy are rejected by the patient’s insurance plan because of preferred pharmacy limitations.

“The thing is, this is not always true,” James says. “Even when the claim is denied, we have to do some investigating to see what the truth really is. Often, we are, in fact, able to provide services to these patients.”

So far, Karen is still able to get her treatments through her pharmacy of choice. But last month the PBM, a middleman in servicing pharmacy benefits for health insurance companies, stepped up the pressure. In a letter she received, they stated that there was a nationwide shortage of IVIG and again stated Karen was required to switch to their preferred pharmacy.

Someone from the preferred pharmacy even followed up with a phone call out of the blue, insisting that her health plan would not pay for the treatment if she didn’t get her medication through their company, a large, nationwide chain that is financially linked to both the insurance company and the PBM.

“IVIG is extremely expensive,” Karen says. “There’s no way we can pay for it ourselves. They’ve been writing these letters and now they’re calling me. I’m terrified! These people have no concern for my diagnosis or my medical care.”

While plasma donations decreased last year as a result of pandemic restrictions and many expect some immune globulin (IG) products to be in short supply, an IG shortage has not yet materialized. In fact, the only agency authorized to make a declaration of a drug shortage is the Food and Drug Administration (FDA), and to date no such declaration has been issued for immune globulin.

“It’s just wrong that there is an IG shortage,” James says. “Even if there were, the pharmacy in question would not be the only place that has availability of IG products. In fact, patients at small pharmacies like CSI Pharmacy would be more likely to be protected than those at a large national chain pharmacy.”

For patients like Karen who might be feeling more pressure to change to a new pharmacy for specialty medications like IVIG, James has a few suggestions. For starters, if you are already receiving services that you are happy with, don’t automatically agree to change.

“Be an advocate for yourself,” James says. “Tell your plan, look, I have been stable with my current pharmacy. I’m happy with the services they provide. I have a good relationship with my infusion nurse. I do not want all that change, and I would like to opt out and continue to use my current provider.”

It’s also a good idea to call your specialty pharmacy’s patient advocate and let them know what’s going on with the insurance company. You have a relationship with the people at your pharmacy, and they can do the necessary investigating to see if anything has changed with your coverage.

As Karen and David found out when they called their specialty pharmacy, the insurer was continuing to cover the cost of Karen’s infusions, despite the threatening letters they were sending to her. And her pharmacy had no intention of billing her for anything more than her copay.

If you have Medicare and your IVIG is covered under the Medicare Part D drug plan, you are protected against this practice. Language in the Medicare legislation specifies that patients can choose to get their medications from “any willing provider.” So by law, insurers are not allowed to force patients to a certain pharmacy.

“I believe that patients deserve to have the power to make their own health care decisions,” James says. “That’s when the best care takes place. I hate to see patients being forced, against their will, to use specific pharmacies simply as a business decision. The problem with that is there’s no incentive for the big chain pharmacies to do a great job, because when patients don’t have a choice, they never have to make patients happy in order to keep their business.”

CSI Pharmacy would like to know if this sort of pressure to change pharmacies is happening to others. If you’ve received communication from your insurance plan or their pharmacy benefits manager urging you to move your care to their preferred specialty pharmacy, please drop us a note at [email protected].

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Advocacy IG Therapy Patient stories

IG Shortage is Coming

Bonnie and Walter Joslin smiling in front of their home door.

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 reached out Facebook and was put in touch with CSI Pharmacy, which was able to get Kip hooked up
with home infusions within a week.

“He was already starting to relapse,” Bonnie says. “But CSI 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 does happen. Certain sites of care may stop treating outpatients. If they do treat outpatients, they may 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. 

At CSI, we want to see all patients have access to all brands in their preferred site of care. 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.

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Health Information

Get Your Flu Shot Now

Dale wearing blue gloves giving a flu shot to a patient.

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

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

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

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

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

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

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

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

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

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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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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.