2013 Patient Access for Florida Flyers

Ezra SantiagoTampa, FL“Sometimes I ask myself why patients have to fail first. Who would want their loved one to fail before they get the medicine they really need? Patients shouldn’t have to face this barrier to 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.

Ezra has persevered through health issues her entire life. She has struggled with gaining access to the treatments she needs. She was diagnosed with epilepsy, and in 2003, she had brain surgery. Then in 2006, she was diagnosed with Lupus.

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“The most difficult moments in my life have been watching my daughter being forced to go through step therapy and end up back in the emergency room over and over because her seizures were out of control.” Nicole is a mother, daughter, wife, fierce advocate and former Program Administrator for the Florida Department of Health. Her daughter was diagnosed with epilepsy six years ago, and four years later she was diagnosed with the disease as well. Continuity of care is very important. Nicole’s daughter needed a certain kind of medicine, made by a certain manufacturer, for optimal results. If her medicine was switched because a formulary was changed it impacts her health severely. On several occasions, she had to go through step therapy and spend months trying several medications. She would end up in the emergency room or hospital because those medicines couldn’t regulate her seizures. It’s important that people have access to medications that work for them.




Nicole HillTallahassee, FL

“Nothing is done quickly, and patients suffer in the meantime. Stress is the number one cause of relapse and exacerbation of an MS patient. This is scary for me, because without medication I would end up in a wheel chair. Everyone is an individual, and as such they need individualized treatment. My medication works for me, and I need it desperately.” Lourdes has faced multiple barriers to continuity of care over the past several years. In 2006, she spent months fighting for access to medication for her multiple sclerosis (MS). She had to provide four medical peer-reviewed journal articles to show why the drug she had been taking was medically necessary for her condition. Now, only seven years later, her insurance provider denied her access to her multiple sclerosis (MS) medication once again. Lourdes has a very active and malignant form of MS that only affects between one and two percent of patients with MS, which is why her doctor does not want her using other drugs. Patients should not have to jump over administrative hurdles to receive the medication that they so desperately need to survive. Treatment decisions should be made by patients and physicians, not insurance companies or bureaucrats.



Lourdes DuarteMiami, FL


“When the formulary requirements changed, I had to fail first on one treatment, losing a year of access to advanced medicines.” Pam was diagnosed with hepatitis C more than 40 years ago, and knows all too well the impact of this disease as president of Hepatitis Education Awareness and Liver Support (H.E.A.L.S.) of the South. She is a tireless advocate for hepatitis patients and spends most of her time educating others about hepatitis. In December 1998, she had an issue gaining access to a newer hepatitis C treatment. Ribavirin had recently been approved to be added to Interferon, a medicine that treats hepatitis C. However, her insurance company required her to go through step therapy. She had to take Interferon only for one year and fail first before she could get the superior Ribavirin/Interferon treatment her doctor wanted to prescribe.




Pam LangfordTallahassee, FL

Health & Medicine

2013 Patient Access for Florida Flyers