nicoLE HiLLTallahassee, FL

• Nicole and her daughter both suffer from epilepsy, and have navigated the health care system to ensure they get the right medicine.

• The most difficult moments Nicole has faced as a parent was to watch her daughter be forced to go through step therapy and end up in the ER because her seizures were out of control.

• Her own father suffered two years due to fail first before he could get the medication to clear up his severe psoriasis.

Her StoryNicole 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. Since then, she has learned a lot about the limitations of our current health care system in Florida and the burden that patients face when trying to receive the treatment they need most.

“When you’re in the midst of a crisis, such as your daughter having a seizure, it’s hard to think of the cause. My daughter needs a certain kind of medicine, made by a certain manufacturer, for optimal results. If her medicine was switched because a formulary was changed or the drug store no longer

carries the medicine that’s prescribed, which has happened, it impacts her health severely.” The wrong medication can cause negative side effects and symptoms that affect a patient’s quality of life. Side effects can include anything from tremors to personality changes. Every person’s chemical makeup is different, and each medication will affect them differently. It’s important that people have access to medications that work for them. “I’ve had to fight to ensure that my daughter gets the treatment she needs. In some cases, what she needed was not on the formulary because it was a brand name drug. She would have 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. There’s too much paperwork, approvals and dropping the ball. We need patient-centered care.”

In addition to Nicole’s struggle with getting the right treatments for her daughter and herself, she has seen her father struggle with receiving the right treatment for his psoriasis. “My dad had psoriasis, and he had to ‘fail first’ for a period of two years on a medicine that wasn’t working before he was allowed to take the medicine he needed. He suffered two years of embarrassment and discomfort, and it was completely unnecessary. Now that he has the right medication, his psoriasis has cleared up almost completely.”

Patients in our state suffer because they have to adhere to limitations on access to medications; health is secondary to cost. It’s unfortunate because saving money in the short-term can create challenges for a provider, especially when trying to prescribe what they believe to be the best medicine for a patient and results in bigger health problems. This can also force patients into a more expensive care setting, such as an emergency room or hospital. If the right treatments promote improved outcomes and quality of life for patients and their caregivers, why not put the patient’s care first?

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