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Advocacy IG Therapy

Don’t Take No for an Answer

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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Health Information

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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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 Pharmacy stories

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.