Patient Accessfor FLORIDA

Ezra SantiagoTampa, 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 StoryEzra 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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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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LOURDES DUARTEMiami, FL • Lourdes has struggled

with continuity of care issues to receive access to her MS treatment. These issues have posed a threat to her future.

• Stress is the number one cause of relapse and exacerbation of MS patients, as well as many other patients. The current system is not designed to reduce the burden on patients.

• Patients should not have to jump over administrative hurdles to receive the medication that they so desperately need to survive.

Her StoryLourdes has faced multiple barriers to continuity of care over the past several years. This year her insurance provider denied her access to her multiple sclerosis (MS) medication once again. In 2006, she spent months fighting for access to medication. 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. Lourdes was diagnosed with MS in 1994. The disease, affecting her central nervous system, has caused her to suffer from fatigue, numbness in her lower extremities, difficulty walking and dizziness. Once she was put on her medication, her symptoms disappeared and she no longer suffered any side effects. 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. After being without her medication from March to November 2006, Lourdes’ symptoms returned since being in remission for almost 12 years. Going without her treatment caused plaques, or growths, to form on her cervical spine. Her vision also completely changed; her double vision worsened and her optic nerve was damaged. Lourdes’ doctor, Dr. Sheremata, said that there also seemed to be regression of her neurological condition and that “we must do anything we can to get this lady back on effective therapy. Her future appears clouded at present time unless we can get her back on her medication.” After reviewing her case, an Administrative Law Judge found that the medication she was taking was safe and medically necessary for her medical condition. Now, only seven years later, Lourdes had the same problem gaining access to her medication. The Medicare formulary changed this year, and Lourdes had to go through a lengthy prior authorization and approval. Furthermore, her insurer was supposed to respond to the appeal within 24-72 hours, which they did not do.

When describing the process, Lourdes said, “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.” Weeks after she submitted paperwork for her appeal, her insurance company called and informed her that she had been approved for another year. “I will most likely have to do this again, but I will continue to fight and win this battle as long as my health allows me to.”

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Pam LangfordTallahassee, FL

• As a long-time hepatitis C patient, Pam had to fail first on one treatment, losing a year of access to advanced medicine.

• The dangers in fail first and need for education inspired her to dedicate her life to helping other patients across the nation.

• As a patient with hepatitis C, she had to fail on an older treatment before she could receive get the superior Ribavirin/Interferon treatment her doctor wanted to prescribe.

Her StoryPam 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.

A few years later in May 2011, the Ribavirin/Interferon combination was the accepted standard of care. At this point, two new medications, Incivek and Victrelis, were released to use with the medication Pam and others were taking.

“Many people in my support group were told by their insurance companies that they had to fail on Interferon and Ribavirin first before they could receive the newer, better three-medication treatment that was FDA approved in May 2011.”

Her issues to quality care and proper care did not end there. A few years ago, Medicare would not pay for Pam’s thyroid test, even when symptoms were present and the doctor ordered it. Pam had to pay $125 out of pocket, which is a significant amount for someone on SSDI.

“I was so upset when it happened. I believe a doctor should be able to order any test he wants on a patient, and at least a portion of it should be covered, or covered equally, as the rest of the labs are.”

This year Pam is going to have trouble gaining access to her normal Ambien prescription. Her insurance company is only going to give her 60 pills each year, when she has been receiving 30 pills each month. Medicare is also not willing to cover Estrace, a hormone replacement medicine, for women over 60. Pam has been on these two medications for 14 years since her hysterectomy. Not having access to the hormone replacement medication would affect her more than the average person since she also has hepatitis C.

“These restraints on access to treatment do not protect patients, they only serve to interfere with the doctor-patient relationship. I believe any treatment decision should be between the doctor and his/her patient, without interference.”

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