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Where is the patient's voice in the drug access debate?

EpiPen is yet another drug with an outrageous price increase. It’s hard to know why the pharmaceutical company has done so, but one reason is because they have no competitors and they’re running sort of a monopoly.

In the midst of the ongoing debate about soaring drug prices, there is one voice that is too rarely heard — the patient voice. As the ones depending on these drugs each and every day, patients must be considered first and foremost. Who speaks for us? Certainly it isn't the insurers who fight filling our prescriptions for medications deemed vital by our doctors. Supposedly it is the job of the insurance companies to facilitate access to these medications, but that is not what is happening.

I can attest to this more than most: I am a psoriasis patient and have been sick most of my life. My symptoms first appeared when I was a child, and it has taken me decades to reach some level of control over my condition. At five years old, 95 percent of my body was covered with rashes and scabs, the cause of which no one could immediately diagnose. School excluded me for a period of time, fearing I might be contagious. Eventually, my condition was identified, and it took many painkillers and years for my doctor and I to finally find a way to manage the disease.

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Those living with a chronic disease like I am can understand the relief I felt when I discovered the particular drug that allowed me to wake up in the mornings, capable of standing and walking. Unfortunately, my health insurance company did not feel that this was proof enough to approve my doctor's prescription. Now we must fight with my insurer every three months through telephone calls, paperwork and appeals so I can receive my correct dosage of medication. This is an issue that millions across the country are facing, whatever their particular ailment.

The National Psoriasis Foundation describes psoriasis as an autoimmune disease characterized by a faulty immune system signal that speeds up the growth cycle of skin cells. It affects as many as 7.5 million Americans and 125 million people worldwide. Its impact is significant, causing embarrassment and discomfort, and in some, difficulty standing or sitting for long periods of time or using their hands.

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Like many chronic disease patients, I have tried a multitude of drugs. Some worked for me for only a short period of time, and others had no impact. When I ultimately found relief, my insurer denied that prescription and put me on another drug — one that did nothing for my pain. My insurer insisted on this medication because it was a cheaper alternative. Prioritizing price over a patient's well-being is unconscionable.

I do not have a unique case when it comes to accessing medication, sadly; this type of denial is rampant across the country. Patients are up against a wall with their insurers who are placing an alarming number of barriers around drug access and often forcing patients to take something that will have no impact on their health or quality of life.

It may seem unbelievable that the medical team, which knows a patient's history better than anyone, is not able to prescribe the drug that has shown to have the only positive impact on a patient's illness. Instead, insurance companies, which do not have any knowledge of a patient's personal situation, are making the final health decisions for millions across the country.

For now, I have access to my prescribed medication at the correct dosage. But I will never be fully at ease while I wait every three months for the next possible rejection.

Insurers are failing patients by denying us access to medicines when there is no medical reason. They are risking our health when our illnesses can be better managed under our doctors' guidance. I implore insurers to listen to patients — and if they refuse to do so, I ask our lawmakers to fight for their constituents and all Americans who need access to these lifesaving treatments.

Diane Talbert is a psoriasis patient and advocate who lives in Waldorf. Her email is psoriasischampion@gmail.com.

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