Ezra has struggled her whole life with epilepsy and lupus, and securing access to necessary medications and care has been challenging. She has faced barriers in gaining approval for expensive new treatments like Benlysta and maintaining access to medications like CellCept when generics became available. Additionally, it has been difficult for her to find a gynecologist that accepts her Medicaid to receive refills of the only birth control option she can use, Mirena, which is essential for managing her lupus. The current system places undue burdens on patients in need of healthcare that can exacerbate their conditions.

1. Patient
Access
forFLORIDA
Ezra Santiago
Tampa, FL
• As a patient first
with epilepsy then
with lupus, Ezra has
suffered a myriad of
health issues that
leave her battling
access to medicines
and care.
• From critical medications to Medicare services, the
current system places undue stress and burden
on patients and caregivers, especially by making
patients fail first on medications before they can
have the treatment they
really need.
• Securing even basic medicine or care can be a
challenge that patients should not have to face.
Her Story
Ezra has persevered through health issues her entire life. She
was on Medicare even before Part D, and in the past she has
struggled with gaining access to the treatments she needs.
In some cases she has had to get help from foundations and
grants to gain access to medication.
She was diagnosed with epilepsy, and in 2003, she had brain
surgery. The surgery cured her epilepsy; before surgery she
had every type of seizure. For a brief period of time after her
surgery, she was able to work.
Then in 2006, she was diagnosed with Lupus. She’s had
more health issues as a result of the Lupus than she did living
with seizures for 22 years. The Lupus first manifested with
pneumonia, and then she developed blood clots and kidney
issues. She now has a dead bone in her knee because of
steroids and muscular affirmation, which causes extra veins to
grow on the inside, leaving her leg in chronic pain.
Ezra has had a hard time gaining access to Benlysta, the first
prescription treatment in more than 50 years approved for adults
with active, systemic lupus erythematosus who are receiving
other lupus medicines. This new drug is delivered through an
intravenous (IV) infusion, and it is expensive. She had to fight in
an attempt to get Medicare to take care of it, and Medicare still
only covers 20 percent of the cost of this medication.
“I was on CellCept successfully, and a couple years after I
started this medication, the patent expired and generics were
produced. At that time, insurers wanted to switch people over to
the generic version of the medication. I know others who have
dealt with this too, because it wasn’t working the same as the
name brand treatment. When I was on the generic, I noticed
my kidneys were functioning worse, but I had to fail first on the
generic before I could regain access to the CellCept medication.”
Additionally, Ezra’s menstrual cycle has always been irregular
with intense cramping and long menstrual cycles, which can
make her Lupus flare up. Birth control is critical to managing
her cycle. Due to her blood clots, Mirena is the only type of birth
control medication she can use.
“It’s been difficult for me to be seen by a gynecologist and get
another prescription for Mirena. Fewer places accept Medicaid
patients, and those who do say that they only accept new
patients who are already pregnant or have female-related
cancers. I was finally seen for a check up a couple months ago,
but I was told my insurance would not cover the replacement
Mirena. I’ve been searching to see if any foundations or
grants could help cover it. I find it shocking that even though
Mirena isn’t a choice, it’s a necessity for me, I’m denied this
medication.”
The current system puts undue stress on the patient, and stress
is damaging for those with Lupus and for patients with other
illnesses. We need policy changes that will improve access to
the treatments people really need.
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