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CSI Pharmacy Expands Specialty Infusion Services in the Midwest

NASH, Texas, April 12, 2023 /PRNewswire/ — CSI Pharmacy, an independent, national specialty pharmacy and home infusion provider, announced today the opening of its third regional pharmacy location. Operating out of West Chester, OH, the new location greatly expands the company’s current dispensing capabilities.

“With the recent opening of our Connecticut pharmacy in February, the addition of our Ohio location positions CSI Pharmacy as a national player in the specialty infusion industry,” said COO Randy Broyles, RPh. “Multiple locations help us not only compete more effectively in local markets, but also improves our ability to secure in-network status with some regional and national insurance providers.”

“The addition of our Ohio location positions CSI Pharmacy as a national player in the specialty infusion industry.”

“It also means we are better prepared operationally in case of emergencies,” added Chief Pharmacy Officer, Jack Lemley, PharmD. “Having the capacity to shift dispensing locations in case of severe weather or other disruption means our customers have an extra layer of security with their care.”

The new state-of-the-art facility allows for complete duplication of its primary pharmacy operations in Nash, Texas. With 12,000 square feet of space, the West Chester pharmacy provides space for additional medication storage and distribution capacity, as well as a multi-chair infusion suite.

“While the vast majority of our customers are infused at home, infusion suites offer important benefits to some patients,” Lemley explained. “Those might be patients who either like the social environment of an infusion suite, require a higher level of clinical monitoring, don’t want to store their medications and supplies at home, or otherwise can’t or don’t want to bring their medical treatment home with them.”

About CSI Pharmacy

CSI Pharmacy is a national specialty pharmacy dedicated to serving patients with chronic and rare illnesses. Founded by pharmacists in 2014, the company specializes in treating rare diseases with biologics and plasma-derived therapies. It employs specially trained infusion nurses to provide these treatments to patients around the country. CSI continues to be led by co-founder and CEO, James Sheets, PharmD. Today, CSI Pharmacy is licensed to dispense in 48 states, plus D.C., and is accredited by two of the nation’s leading specialty pharmacy accrediting bodies: the Accreditation Commission for Health Care (ACHC) and URAC.


CSI Pharmacy stories Uncategorized

CSI Pharmacy Announces Limited Distribution Agreement for Gammaplex

NASH, Texas, March 30, 2023 /PRNewswire/ — CSI Pharmacy, LLC, an independent, national specialty pharmacy and home infusion provider, today announced an agreement with Bio Products Laboratory (BPL) for limited distribution rights to its immune globulin product Gammaplex®.

Access to Gammaplex means CSI Pharmacy is now able to dispense all FDA-approved immune globulin products. The company expects to begin stocking Gammaplex immediately.

“Gammaplex not only expands our product portfolio, but it increases treatment options for patients who have various conditions,” said COO Randy Broyles, RPh. “By diversifying our portfolio with BPL and other plasma product manufacturers, we’re strengthening our industry partnerships, as well as strengthening the supply chain for our patients and customers.”

Immune globulin products contain human antibodies, derived primarily from donated human plasma. Multiple immune globulin products are manufactured for the U.S. market. They are commonly used to treat conditions such as primary and secondary immunodeficiencies, autoimmune neurological and dermatological disorders, as well as hundreds of other conditions believed to be immune mediated.

“We want to thank BPL for trusting CSI to deliver a positive patient experience with its products,” remarked co-founder and CEO James Sheets, PharmD. “As our company continues to grow, we will need partnerships like this one to secure product availability for customers, now and into the future.”


CSI Pharmacy is a national specialty pharmacy dedicated to serving patients with chronic and rare illnesses. Founded by pharmacists in 2014, the company specializes in treating rare diseases with biologics and plasma-derived therapies. It employs specially trained infusion nurses to provide these treatments to patients around the country. CSI continues to be led by co-founder and CEO, James Sheets, PharmD. Today, CSI Pharmacy is licensed to dispense in 48 states, plus D.C., and is accredited by two of the nation’s leading specialty pharmacy accrediting bodies: the Accreditation Commission for Health Care (ACHC) and URAC.


CSI Pharmacy stories Uncategorized

CSI Pharmacy Expands Specialty Infusion Services on the East Coast

NASH, Texas, Feb. 15, 2023 /PRNewswire/ — CSI Pharmacy, LLC, an independent, national specialty pharmacy and home infusion provider, announced today the opening of its second pharmacy location. Operating out of Enfield, CT, the new location augments the company’s current national dispensing capabilities, previously centralized in Nash, Texas.

“The opening of our Connecticut pharmacy signals the next step in CSI Pharmacy’s growth strategy,” said co-founder and CEO James Sheets, PharmD. “Having a presence on the East Coast gives us, not only additional capacity to expand within a highly populous region, but additional resources to be able to respond rapidly to customers’ needs and continue providing five-star service to existing customers.”

The new 4,000-square foot facility reinforces the company’s ability to serve patients and referral sources across the eastern United States, with more state pharmacy licensures planned for in the coming months. The additional location enables CSI Pharmacy to navigate complex payer and regulatory requirements more effectively in the region. Moreover, it offers redundant pharmacy services, distribution, and medication storage capabilities in the event of localized service disruptions.

“We are working carefully to solidify our national presence by building a robust pharmacy network,” said COO Randy Broyles, RPh. “Connecticut offers a prime location for us to begin moving toward that goal.”

CSI Pharmacy is also nearing completion of a third pharmacy, to be announced in the coming weeks.

“The home setting continues to grow as the preferred setting for infused medications,” Sheets added. “Patients want choices, and they deserve choices,” he continued. “The more we expand, the better we can meet this growing demand. But we’re adamant that we will not sacrifice the personalized attention our customers rightfully expect.”  

About CSI Pharmacy

CSI Pharmacy is a national specialty pharmacy dedicated to serving patients with chronic and rare illnesses. Founded by pharmacists in 2014, the company specializes in treating rare diseases with biologics and plasma-derived therapies. It employs specially trained infusion nurses to provide these treatments to patients around the country. CSI continues to be led by co-founder and CEO, James Sheets, PharmD. Today, CSI Pharmacy is licensed to dispense in 48 states, plus D.C., and is accredited by two of the nation’s leading specialty pharmacy accrediting bodies: the Accreditation Commission for Health Care (ACHC) and URAC.


Health Information

Don’t Flush!!

Have you checked your medicine cabinet recently? I was cleaning things out the other day and was stunned to see the shelves behind my bathroom mirror were crowded with bottles I hadn’t touched in years. There were antibiotics I didn’t finish because I had an allergic reaction, an unfinished nausea prescription from the time I had the flu, and pain meds from surgery a while ago. I even had a bottle of ibuprofen from before my mother passed away five years ago.

“Having a shelf full of old or expired medications in the home can be a significant safety risk to family, friends, or even pets,” says CSI Pharmacy Vice President of Clinical Services, Barry Buls, PharmD. 

People often forget why those medications were originally prescribed, or they simply grab the wrong bottle, which could be dangerous. Medications prescribed for one person may make another member of the family severely ill. The powerful pain meds prescribed for cancer patients, for example, could send another person to the hospital or even cause their death. That’s why Barry recommends that each member of the household store their medications in a separate space.

CSI Pharmacy’s Chief Pharmacy Officer, Jack Lemley, PharmD, reminds us that hanging onto those old narcotics that were prescribed after surgery can cause curious kids to get hooked on opioids. And while most medications lose effectiveness over time, some, like that tetracycline in the medicine cabinet, may become harmful if taken past the expiration date. 

“It’s just safer to keep only the medications that are on your current medication list in your home and in a safe place and out of the reach of children,” Barry says.

Getting rid of unwanted medications, however, is not as straightforward as dropping them into the trash. At one time, people were advised to flush old or unused medications down the sink or toilet. Now we know it can be harmful to the environment and even human health when pharmaceuticals end up in our waterways. They can even show up in our drinking water, because most wastewater treatment facilities are not equipped to remove these chemical substances.

So how can we safely get rid of unused or expired meds?

Take Back Programs

The best way to dispose of unwanted prescription or over-the-counter drugs is through a “Take Back” event or at a special drop-off site. Every year, the US Drug Enforcement Agency (DEA) sponsors National Prescription Drug Take Back events. At these times, public safety agencies across the country are available to collect tablets, capsules, patches, and other forms of prescription and over-the-counter drugs, which are then disposed of safely. Medications are accepted anonymously, and the program is free.

Throughout the rest of the year, unneeded medications can be dropped off at special disposal locations, including pharmacies, hospitals, and businesses. Many local police or fire departments also provide year-round drop boxes. Your pharmacy may even offer an on-site drop-off box, mail-back program, or other ways to safely dispose of unused meds.

Home Disposal

If you are unable to get to a Take Back event or drop-off location, many drugs can safely be disposed of at home. These include prescription and over-the-counter (OTC) pills, liquids, drops, patches, and creams. The US Food and Drug Administration (FDA) provides guidelines for how to so this:

  1. Remove the drugs from their original containers and mix them with something undesirable, like used coffee grounds, dirt, or cat litter. This makes the medicine less appealing to children and pets and unrecognizable to someone who might intentionally go through the trash looking for drugs.
  2. Put the mixture in something you can close (a re-sealable zipper storage bag, empty can, or other container) to prevent the drug from leaking or spilling out.
  3. Throw the container in the garbage.
  4. Before throwing away the packaging, scratch out all your personal information on the empty package to protect your identity and privacy.

Special Considerations

Some products, however, require special handling.

Inhaled medications, for example, used for asthma and other breathing conditions, come in aerosol containers that can be dangerous if punctured or thrown into a fire or incinerator. To properly dispose of these containers, whether they are left over, expired, or used up, the FDA recommends contacting your trash facility. These metal canisters should not be recycled.

Similarly, fentanyl patches, used for long-term pain management, require special handling. Even after one of these adhesive skin patches is used, a lot of this high-dose medication can remain. This can be especially dangerous if someone for whom this drug is not prescribed, especially children, touches the patch for even a short time. Fentanyl patches are one exception to the advice against flushing meds. In fact, the FDA specifically recommends promptly disposing of used fentanyl patches by folding them in half with the sticky sides together, then flushing them down a toilet.

The FDA highlights other exceptions to the no-flush rule for medications that have similar safety concerns. Their Flush List includes drugs such as those that are highly sought after for misuse and/or abuse and those that can cause death from even one dose if used inappropriately. They recommend checking the medication label or their online Flush List to see if this form of disposal is recommended.

The FDA acknowledges the environmental concerns about disposing of these and all medications through the sanitation system. The agency recommends flushing for these specific medications only as a last resort. And their 2017 study of the risks posed by such disposal shows there is negligible toxicity to the environment and human health.

Remember, do not flush your medicine unless it is on the Flush List.

CSI Pharmacy stories

Another Set of Trained Eyes

Dr. Ed O’Bryan isn’t one to sit around. In fact, he stands—dances, even—even when he’s working at his desk.

He practices as an ER doctor, teaches emergency medicine, started and serves on the board of trustees for two nonprofit organizations, and founded a number of health-related companies, several of which he still serves as a board member for. He has a long list of peer-reviewed publications and given countless talks, including a TEDx talk in Charleston. And he’s always looking for better ways to provide the absolute best healthcare for patients. 

In August, Ed arrived at CSI Pharmacy to serve as our first chief medical officer. 

“I’ve always had an entrepreneurial mindset,” says Ed, who in addition to achieving a medical degree from the Medical University of South Carolina also earned an MBA from the University of Tennessee.

As CSI Pharmacy grows, expanding services across the country and growing the number of therapies we now offer, Ed provides clinical oversight to ensure we continue to provide the best care for those who depend on these treatments. He works with pharmacists and nurses to monitor therapies and patient outcomes, and he coordinates communication with healthcare providers so they are continually informed about their patients’ progress.

“We work with complex diseases,” Ed says. “They’re difficult to treat, and every patient is different in how they respond. Adding that extra layer of clinical oversight, whether it’s for patient questions or challenges that our nurses may have, just makes us better and further sets us apart from other pharmacies.”

Among his priorities is developing a digital evaluation process to monitor the impact of treatment on both the patient’s condition and quality of life. Gathering this data over a period of time can help pharmacists and physicians understand what’s working best to improve patient outcomes. It may even add to the scientific understanding of diseases such as myasthenia gravis, myositis, chronic inflammatory demyelinating polyneuropathy (CIDP), primary immunodeficiency diseases, and other conditions we treat.

Ed also wants to create a physician advisory council for CSI Pharmacy. Having a relationship with a group of specialists and researchers will help us stay on the cutting edge of new and expanding therapies that can best serve our patient communities.

“We want to show that patient outcomes are better when they get their infusions at home versus going to a hospital setting,” Ed says. “Having an extra set of trained eyes on our patients will help to make sure that their complex and chronic diseases are being managed in the best way possible. This can really take us to the next level.”

When he’s not working, Ed enjoys hanging out with his wife, Claire, a nurse practitioner, and their daughters, Evy (age 7) and Tillie (age 5). And while surfing is one of his favorite pastimes, he doesn’t get to do this much since he moved from Charleston, South Carolina to Nashville, Tennessee.

“I just want patients to know that that I’m here to be a resource for them,” Ed says. “These disease states are so complex and challenging from a lot of different standpoints. I’m really excited to be an advocate for them.”

CSI Pharmacy stories

Becoming Family

When Roxanne Marlar was first approached with the offer to join a new specialty pharmacy in Texarkana, Texas, she declined. The job was providing infusion therapies to mostly adult patients in their home. But she was a neonatal intensive care nurse working with premature babies, and she loved her job. She was not interested in making a change. Ever.

But she reluctantly agreed to meet with pharmacist James Sheets for dinner at a restaurant near her home in Little Rock, Arkansas. She found him funny and quirky and maybe a little overly optimistic. He talked about his plans for the new company he and two partners were starting. They were going to grow from a small, local business to a nationwide pharmacy in the next few years. Didn’t she want to be in on the ground floor and be part of this success?  

“It just sounded crazy,” Roxanne says. “I had never heard of immunoglobulin therapy. How could I do this when I don’t even know what it is? So I looked it up and it sounded interesting, that you could send a nurse into a patient’s home to give them this drug. I didn’t even know that was an option in nursing. It piqued my interest, so I decided I would just try it out. If I didn’t like it, I could always go back to the NICU.”

So in May of 2016, she started out with two patients as the only full-time nurse, and the business actually did grow into that nationwide service James had predicted. Today, CSI Pharmacy serves nearly 650 patients in 46 states. Roxanne is now Vice President of Nursing, leading a team of 103 infusion nurses, a director of nursing, five regional supervisors, and several support staff. She also oversees dozens of agency nurses contracted in geographic areas where CSI Pharmacy doesn’t have a nurse on staff.

Roxanne has always been a people person, so the thing she loves about this work is being able to spend time with patients—a minimum of four or five hours for every monthly intravenous immune globulin (IVIG) infusion—and the chance to get to know them on a personal level.

“At CSI Pharmacy, every patient has a primary nurse who comes to do the infusion every time,” she says. “They start out as a stranger in the patient’s house, but that changes quickly. A relationship is built, and the nurse really becomes like family for the patient.”

As an administrator, however, Roxanne doesn’t get that special time with patients as much as she would like. Now she spends most of her time overseeing the nursing staff, making sure they have the resources they need, and making sure patients receive the highest quality care possible. Still, she fills in to infuse patients in her area when needed, because she knows how important it is to spend time with patients, even for administrators.

“Our supervisors usually continue as the primary nurse for at least one or two patients, so they are still in the field,” Roxanne says. “It’s always good to lay your hands on the patient so you remember that what you’re doing on the administrative side is still all about making a difference for patients.”

The relationship that develops with the patient and their caregivers is sometimes a surprise to the nurses Roxanne hires. The infusion world is very different from working in the hospital or other areas of nursing. It gives the nurse a lot more flexibility and autonomy and the chance to be with patients in a whole different way. When nurses come to CSI Pharmacy, they often say they want to take on just a few patients. Just like Roxanne did, it doesn’t take long, before they ask for more and say they want to do this full time.

“Home infusion has my heart,” Roxanne says. “Taking this job has been the best decision I ever made. I will never do anything else.”

CSI Pharmacy stories

Making Our Patients Feel at Home

If there’s one thing that CSI Pharmacy always wants to do better, it’s to help those who need our services feel more comfortable when they arrive on our doorstep.

“A patient’s first experience with a specialty pharmacy can be very confusing,” says Elizabeth Duruz, RPh. “Getting their treatment approved by the insurance plan and all of the steps that need to take place before the patient even gets the medication, can cause a lot of anxiety.”

That’s why Elizabeth is here. She is a Certified Specialty Pharmacist (CSP), an Immunoglobulin Certified Pharmacist (IgCP), and she was recently hired to serve as Clinical Programs Manager at CSI Pharmacy. Together with our Patient Care Coordinators and Patient Advocates, Elizabeth will welcome new patients to our service, educate them about their therapy, answer their questions, and facilitate the preapproval process.

Elizabeth has been a registered pharmacist for twenty-two years and worked in specialty infusion pharmacy services since 2009. Prior to joining CSI Pharmacy, she was part of a large corporation where her work kept her at a distance from the people she served. That’s why she’s especially happy to take on this role at CSI Pharmacy where she can once again develop the kind of personal connections with patients that make her job so rewarding.

One of her major goals will be to make patients a partner in their own care. She will work together with patients and caregivers to understand their goals for treatment, track the effectiveness of their care, and adjust the treatment plan to optimize their therapy.

“Intravenous immune globulin (IVIG) can be uncomfortable for some patients,” Elizabeth says. “A lot of patients just don’t know there are options. Maybe we can slow down the infusion, for example, or spread it out over more than one day. We don’t want the treatment to be a bigger burden than the condition.”

For Elizabeth, it’s an important asset that she also lives with a rare autoimmune condition called sarcoidosis. It’s an inflammatory disease that causes abnormal masses called granulomas to form in the lungs and other organs in the body. The granulomas often change the way the organs work, causing, for example, shortness of breath and cough.

“I really believe this gives me the ability to see things from a patient standpoint,” she says. “My disease causes extreme fatigue and pain, and my insurance has refused to pay for the specialty medication that was helping me. So I can definitely relate to these same challenges that many of our patients have.”

Elizabeth is a native of Ohio but has lived in Atlanta for nearly a decade where she works remotely. She is also a soccer mom, with two players in the family, a son who is 11 and a 21-year-old daughter. Their family also includes two rescue dogs.

“Because of my illness, I’ve had to stop hiking and the other active things that I liked to do,” Elizabeth says. “But I’ve taught myself how to crochet, I make note cards, and I like to work challenging jigsaw puzzles…things that don’t require a lot of energy to enjoy.”

“I feel really at home at CSI Pharmacy, and I have a very strong passion to make sure our patients do too,” Elizabeth says. “I take it very personally if someone can’t get the treatment they need. So it’s my number one priority to see what I can do to overcome whatever barriers they are encountering.”


Uninsured? Healthcare Help is Available

David didn’t have health insurance when he was diagnosed with diabetes recently. The shock of having to cope with a severe chronic condition was bad enough, but now he was faced with having to pay nearly $700 per month just for the medication to treat his disease. Along with this, the American Diabetes Association estimates the added annual expense of treating this chronic condition is almost $18,000. With a family income of less than $24,000 a year, there was no way David would be able to afford this condition.

Unfortunately, when he turned to the two health insurance options available for low-income individuals, he fell through the cracks. Medicaid would cover his wife, and the Children’s Health Insurance Program (CHIP) would cover his two young children. But the Medicaid program is administered by states, each of which has their own rules and eligibility criteria. In Texas, a man like David who is not disabled and is under the age of 65, does not qualify for benefits. He could get coverage through the Health Insurance Marketplace Exchange, but it would cost him more than $300/month. This too was unaffordable.

When you’re in a situation where you need life-saving therapy, but you can’t afford insurance coverage, there are a variety of resources available to help cover the costs. Sometimes we just need help finding them.

While these resources may not be available for all chronic disease conditions, especially those that are rare, you may be surprised how much help is out there if you know where to look.  

Confide in your healthcare provider. This will help providers understand your needs better so they can help you stay healthy. For example, they may be able to prescribe a generic treatment or an alternative drug that is less expensive. Some may also be able to provide resources and suggestions for other options. David’s doctor, for example, gave him drug samples that could tide him over until he found a more sustainable way to pay for treatment.

Look for manufacturer assistance programs. Many pharmaceutical companies have programs that can provide financial assistance for the uninsured and copay assistance for those with insurance who are still unable to afford their medication. You can find this information by doing an internet search for the company that makes your medication, the name of the medication, and the term “patient assistance” or “financial assistance.”  

When David explained his situation to the patient care coordinator at the company that makes his medication, he was able to apply for and receive his medication free for several months until he could find a long-term solution.

See if you qualify for Social Security disability. If your disease makes it impossible for you to work, consider this option. The process is not easy or quick, but if you are accepted for Social Security Disability Insurance (SSDI) or Supplemental Security Income (SSI), you will also qualify for Medicaid. The added good news about this program is Medicaid benefits will start retroactive to the date you applied for disability. Here’s the Social Security link.

Look for local resources. Local health departments and federally funded health clinics can help those with chronic conditions find medical care at little or no cost. The following directories can help you locate resources in your community:

Explore patient support groups. Nonprofit organizations exist for nearly every chronic disease. These groups can put you in touch with others who can provide support and real-world experience of living with your disease. Most also share evidence-based information and the latest research about how to live well with the condition. In addition, a number of these organizations also have an assistance fund to help those in financial need afford the care they need.

CSI Pharmacy’s website provides support group contact information for many of the patient communities that we serve.

For other conditions, do an internet search using terms that include the name of the disease and “support group.”

Look for help through charity organizations. A variety of nonprofit foundations provide financial assistance grants targeting specific conditions or medications. The following are organizations we are aware of that provide this sort of help. You may find others by searching for “financial assistance” and the name of your disease or medication.

  • Accessia Health (formerly known as Patient Services, Inc.) helps with insurance copays and premiums, ancillary costs of care, travel expenses, and infusion costs for a range of chronic and rare diseases. They also provide free legal help for those trying to navigate the confusing systems of disability and health insurance.
  • The Assistance Fund provides financial assistance for copayments, coinsurance, deductibles, and other health-related expenses for 80 specific disease communities. Be aware that this source will only support medications that are FDA-approved for the condition you have.
  • Healthwell Foundation provides financial assistance to help with prescription copays; health insurance premiums, deductibles, and coinsurance; pediatric treatment costs; and health-related travel costs. Their list of disease funds is limited, and they often exhaust available funds quickly, so you may need to keep checking to see if funds relevant to you are available.
  • National Organization for Rare Diseases (NORD) provides financial assistance to help pay for medications, insurance premiums and co-pays, diagnostic testing, and travel for clinical trials or consultation with disease specialists. The list of diseases with which they work is limited to specific rare diseases. They also have a list of resources that provide financial assistance beyond rare disease.
  • Patient Advocate Foundation provides qualified patients with financial assistance for co-pays and co-insurance for prescription drugs for those living with specific disease states. In some instances, assistance with insurance premiums and/or ancillary services associated with the disease also may be available. Individuals must have health insurance, have a confirmed diagnosis, live in the US, and meet certain income limits.

These resources are provided as a service to our patient communities. CSI Pharmacy does not certify or vouch for any of the organizations listed here nor do we benefit in any way from providing this information. If you choose to access these resources, please review the organization’s information carefully before committing to its services or benefits. 


Copay Accumulators Raise Barriers to Care

Alyse has always been the one to come down with every infectious disease that’s going around. As a child, she often spent much of the winter with colds, sinus infections, and ear infections, which were treated with antibiotics. When she was hospitalized with her second bout of pneumonia in one year, her primary care doctor referred her to an immunologist who diagnosed her with common variable immune deficiency (CVID).

CVID is one of more than 450 rare, chronic conditions called primary immune deficiency diseases (PIDD) that are caused by a hereditary defect in the way the body fights infections. For PIDD patients, a part of the immune system is missing or doesn’t function properly, opening the person to all types of potentially dangerous infections.

When Alyse was finally diagnosed properly, her immunologist started her on immune globulin (IG) therapy. These treatments, which she gets intravenously every four weeks, replace the important immune proteins her body is missing. Now, Alyse can live more normally without fear of contracting the kind of severe infections that once made her chronically sick.

Immune globulin is made from donated human plasma and is very expensive. A single infusion can cost as much as $20,000. Until recently, Alyse’s insurance plan covered much of the cost, assessing a manageable $50 per month as a copayment. Over the last few years, however, the out-of-pocket cost for her IG therapy has increased due to a higher deductible plan. Alyse now has a $5,000 deductible before her insurance will cover any of her IG therapy in addition to copays she has to pay until she meets her out-of-pocket maximum of $10,000.

Still, she’d been able to afford her out-of-pocket costs due to the copay assistance offered by the drug manufacturer. For PIDD, the drug manufacturers have copay assistance programs from $2,500 to $10,000 a calendar year which helps her cover the costs

While it was still a struggle, this copay assistance helped Alyse afford the copay for the first few months of the year. This was because the amount paid by the manufacturer’s assistance program counted toward her insurance plan’s $10,000 annual out-of-pocket maximum, which includes all her copays and coinsurance and the deductible she must pay each year. Once she reached this maximum, the plan would pick up the entire cost of her treatments for the rest of the year.

A New Surprise

This year, however, without informing her, Alyse’s insurance plan instituted a copay accumulator program (also called a copay adjustment or maximizer program). This is an insurance industry trend intended to encourage patients to choose lesser expensive or generic medications rather than the more expensive brand names. Unfortunately, there are no less expensive alternatives for this essential treatment for PIDD and many other diseases.

With the copay accumulator program, copay assistance from a third party, like the drug manufacturer, a charitable organization, or a patient support group, is not counted toward a patient’s out-of-pocket maximum. That means the assistance Alyse receives to offset the monthly cost of her treatments no longer counts. After her assistance is used up, she is still responsible for the full amount of the copay charges until she reaches the annual out-of-pocket maximum.   

This has sent Alyse into a panic. There’s no way she can afford to pay $5,000 deductible all at once, as well as the additional copays until she meets her out-of-pocket maximum for her treatments. And without the treatment, she’s terrified that she will again fall victim to chronic, debilitating infections.

Many patients depend on the assistance they get from manufacturers and charities to afford the high cost of specialty medications. Copay accumulators limit a patient’s access to these life-saving therapies. They are extremely harmful to patients, both financially and in terms of their health and wellbeing.

Legislation that Will HELP

Many states and the federal government are now looking at this insurance industry practice and working to eliminate copay accumulator programs. A dozen states and Puerto Rico have already banned the practice. At the federal level, Congress is moving to control high out-of-pocket health insurance costs with the Help Ensure Lower Patient (HELP) Copays Act, a bipartisan bill (HR 5801) introduced in the House of Representatives last November.

The Immune Deficiency Foundation (IDF), the National Hemophilia Foundation, the National Organization for Rare Disorders (NORD), and more than 60 other organizations supporting serious and chronic disease patients have come together to form the All Copays Count Coalition, an organization committed to eliminating this barrier to care at both the state and federal level. Addressing this issue at both legislative levels is important because some insurance plans are regulated by the federal government, while others are regulated at the state level. 

IDF encourages those who use immune globulin therapy to support efforts to make #AllCopaysCount. They encourage you to contact your members of Congress and let them know that you support the HELP Copays Act. NORD and IDF are also following state-level legislation.

In the meantime, not all health insurance plans include a copay accumulator program. When you sign up for a new plan, it’s important to be sure to look for this restriction in the fine print (or call the company) and choose one that doesn’t restrict third-party copays. This may not be easy to determine. If you need help, our Patient Advocates are available to help you find the plan that’s right for you. Email us at [email protected].

Health Information

Feed Your Health Well

During the month of March, we recognize National Nutrition Month. It’s a time for everyone to become more informed about the value of developing healthy eating habits.

Because so many members of our patient communities live with autoimmune diseases, we are especially concerned about how certain foods promote inflammation in the body. Foods that are highly processed, such as high-salt ready-to-eat meals, sugary cereals, high-fat processed meats, and sodas made with high fructose corn syrup are among the products nutrition counselors caution against.

If you’ve thought about how the foods you eat might be affecting your health, this might be the month when you experiment with trying something new. You can use the following ideas as guidelines for making wise food choices.

  • Avoid processed and fast foods, including those with high fructose corn syrup, artificial ingredients, preservatives, and pesticides. Instead, opt for fresh food. Eat a variety of brightly colored fruits and vegetables and foods that don’t contain a long list of unpronounceable ingredients.
  • Reduce the number of foods made with refined white flour and sugar, especially bread, pasta, and most packaged snack foods. Instead, choose foods made with whole grains, such as brown rice, bulgur, and quinoa.
  • Try to eat less saturated fat by cutting back on animal products and foods made with palm kernel oil. This will help your heart as well as your immune system.
  • Use extra-virgin olive oil and expeller-pressed canola, sunflower, and safflower oils.
  • Experiment with adding avocados and nuts to your diet, especially walnuts, cashews, almonds, and nut butters made from these nuts.
  • Eat more vegetable protein, especially from beans and soy, and choose fish, cheese, and yogurt more often than you choose meat.
  • Avoid drinking soda and choose tea instead of coffee.
  • If you drink alcohol, red wine may be preferable.
  • And here’s the good news: dark chocolate (in moderation), can be a healthy choice! (Choose the kind with a minimum of 70% cocoa.)

If you take corticosteroids (prednisone, for example), especially in high doses and for long periods of time, you may develop side effects that have implications for what you eat.

  • Prednisone increases appetite. To avoid weight gain, try to avoid high-calorie foods. Eating frequent, small meals can help maintain steady blood sugar levels so you don’t feel hungry. Getting plenty of exercise will also help.
  • To reduce the risks of high blood pressure and fluid retention, try to keep your salt intake at less than 1,500 mg per day. You can do this by eating fresh rather than processed or canned foods and hiding the saltshaker.
  • If you take medication for high blood pressure, you may need to eat foods high in potassium, such as bananas, apricots, cantaloupe, baked potatoes, and tomatoes.
  • Prednisone can irritate the stomach, so it is important to take it with food, not on an empty stomach.
  • Diabetes is also a risk when taking steroids. To keep blood sugar levels within the normal range, avoid foods high in simple sugars, such as fruit juice and those gooey pastries, and keep carbohydrate intake to between 45 and 60mg per day.

It may not be possible to get all the nutrients you need to be healthy from your diet. That’s where eating specific foods or taking supplements may be useful. The following suggestions are recommended for those who have autoimmune diseases.

  • Bone health is a concern for those who take prednisone. That’s why it’s important to eat foods rich in calcium, such as milk, yogurt, cheese, leafy green vegetables (kale, bok choy), almonds, and broccoli. Calcium supplements may also be needed to minimize bone loss and osteoporosis.
  • Vitamin D is a hormone produced in the skin in response to sunlight. It is also important for bone health as well as controlling inflammation. Because most people do not (and probably should not) spend enough time in the sun, most people need to take Vitamin D as a supplement.
  • Folic acid (also called folate) is a B vitamin that is found in leafy green vegetables, such as spinach, kale, broccoli, and other foods. Because the drug methotrexate interferes with the way folic acid is used in the body, if you take this anti-inflammatory medication, you may need more folic acid than you can get from food. You may want to ask your doctor about folic acid supplements.
  • Omega-3 fatty acids, which are anti-inflammatory, and omega-6 fatty acids, which cause more inflammation, should be in balance in the body to keep us healthy. Most Americans, however, eat much more omega-6 (found in vegetable oils, safflower oils, meat, poultry, and eggs), which causes a more pro-inflammatory state. Eating more foods containing omega-3 fatty acids, such as salmon, mackerel, sardines, leafy green vegetables, flaxseed, canola oil, walnuts, and enriched eggs, can help bring this back into balance. Omega-3 supplements are also available.

Of course you should always avoid foods that you are allergic to. And as always, it’s important to discuss diet with your healthcare providers to be sure they know that you are concerned about this important lifestyle habit and can guide you in making the best choices.