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.
As the shortest month of the year, February is always the rarest
month. Because of this, the last day of February has been chosen as Rare
Disease Day. This year, however, is rarer still, because it’s leap year, the
time when an extra day is added to the calendar: February 29. Which makes it an
even better time to honor our rare disease patients!
Rare Disease Day is a time when advocates take to the
soapbox to raise awareness for the more than 6,000 rare diseases that have been
identified worldwide. More than 300 million people are affected by these
diseases at some point in their lives, which adds up to about the population of
the United States!
CSI Pharmacy works with a number of rare disease
organizations to bring awareness and education. Among these is Myositis Support and Understanding.
Founder Jerry Williams was diagnosed with polymyositis in 2003. He is a
tireless (despite the fatigue of his illness) advocate for those living with
myositis diseases.
Like many who live with a rare disease, Jerry’s myositis
journey has been long and challenging. It started with muscle pain, severe
weakness, muscle wasting, and fatigue. Initially, when they couldn’t figure out
what was going on, doctors told him these symptoms were all in his head. Even
after being identified as myositis, his disease has resisted treatment and been
riddled with complications. He’s spent long stretches of time in the hospital
over the last 17 years with flares, infections, and other complications. Myositis
has even forced him to end his career in the banking industry and go on long-term
disability.
“Leaving the workforce was a blow,” Jerry says. “I thought,
what am I going to do? I knew I needed a purpose.”
Jerry set to work learning about this autoimmune disease of
the muscles. In addition to reading everything he could, he looked around for
others who had myositis. He knew their first-hand experiences would be at least
as helpful as the information from medical sources.
Through this process, Jerry recognized there was a need for
more patient-focused services and programs for those who live with myositis
diseases. In 2010, he started a Facebook support group called “Polymyowhat:
Understanding Myositis.” As the group attracted members with the several other
forms of myositis in addition to polymyositis, he changed the name and
eventually formed the nonprofit Myositis Support and Understanding (MSU). The
all-volunteer organization is run completely by those who are directly affected
by myositis, including patients and care partners. Jerry serves as President
and Executive Director.
On this the rarest day of the year, Jerry’s message to
others who live with rare diseases is never give up.
“Don’t accept the status quo,” he says. “When you’re
diagnosed with a disease like myositis that limits your life, you have to find
new ways to live your passion.”
Jerry has found his passion in
helping to empower others who live with myositis to advocate for their best
life. MSU now has two websites, several Facebook support groups, and live
online video support sessions. MSU operates the official Myositis Support
Community on the Inspire health support platform. They also provide educational
programs, a smartphone app for tracking symptoms and treatments, clinical
trials opportunities, and a financial assistance program.
“Living with chronic illness has also offered me some
wonderful opportunities,” Jerry says. “It’s amazing the relationships I have
built. And I never would have imagined working with a nonprofit as part of what
I do and who I am. Now I can’t imagine not doing it.”
CSI Pharmacy is pleased to support the efforts of MSU and
other patient organizations that are helping rare disease patients stay engaged
with the world. We provide therapies uniquely suited to rare diseases, offering
these therapies to more than a dozen patient communities. This month we are
thrilled to honor those who daily cope with the challenges of the following rare
diseases:
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.”
“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.
