Keep in mind, Express Scripts, Optum RX, and CVS Caremark are pharmacy benefit managers or PBMs that force many patients to their own affiliated mail-order pharmacies.
An oncologist or physician that treats from Georgia spoke stating, “I take care of patients who every day is precious to them and every day that they are without their medications is of critical importance to their battle to fight their cancer.” With all of the struggles with mail-order pharmacy and PBMs, she states that they’ve had to hire 2 additional employees just to help patients assist her patients in obtaining medications that at one time she could fill from her facility. These medications are stocked on her shelf, but the PBMs will not cover the medication on the shelf. The patient is mandated by the PBM or insurance company to use the PBM owned or affiliated mail-order pharmacy.
She told stories of her patients. Sharon, a 52-year-old diagnosed with cancer would need an oral pill to be taken with her radiation. 2 weeks prior she sent in the prescription by fax and electronically. The patient never received the drug. The patient called the nurse on New Year's Eve. The medication was still is not there. The patient and nurse had to spend hours on the phone. The patient’s radiation was delayed for a week due to forced mail-order pharmacy.
Next, she told the story of Nancy, a 57-year-old with a history of breast cancer. The patient came in thinking that she had shingles on her, but it turned out to be breast cancer. The physician was excited that she had a great new medicine with a 70% response rate. It took the physician 5 and ½ weeks to get the medications from the mail-order pharmacy; even though, the medication was in the physician's office. Again, the PBM mandated that the patient get her medications from the PBM affiliated to mail-order pharmacy. In the meantime, the doctor states the patient's chest wall was “rotting away and the patient had to take heavy narcotics.”
Katie Groover is another cancer survivor. She states, “Coming in here I was nervous. Now, my blood is boiling.“
She states she started taking medications in March 2018. She was mandated to mail-order. The majority of her meds come from Express Scripts and Express Scripts specialty pharmacy, Accredo. She states, “To be very clear, I do not use Acdredo because I choose Accredo; I use Accredo because I have to.”
“Patients are forced to mail-order to receive a higher level of care. Please let me dispel that myth. We have all heard arguments that patients must use PBM pharmacies so they can get a higher level of care. I don’t get patient care from Accredo. I get a product shipped to me. In fact, it’s almost impossible for me to speak with a pharmacist at Accredo. Instead, I spend my time being bounced around from department to department like a ping pong ball…. I don’t know these people. They don’t know me. In fact, I don’t think that I’ve ever talked to the same person twice. I feel like a broken record every time I call.” “It’s exhausting and so time-consuming.”
My care is also fragmented. When you take away patient choice, care becomes disjointed. Where one pharmacy doesn’t necessarily know what the other pharmacy has dispensed.” She highlights the importance of getting all medications from one pharmacy.
She spoke of the many hours she had spent trying to get a medication filled. The medication was delayed by 2 weeks.
“Imagine working and having to spend this much time on the phone? What employer is going to put up with that.” “It’s exhausting and It is anything but patient care. I shouldn’t have to be my own advocate month in and month out, fighting the pharmacy that is supposed to be providing me care. I like to think that I’m of fairly sound mind, but what about the people who are not of sound mind? It’s crazy.”
Of all of her calls, she states that she was never once "afforded the opportunity to speak with a pharmacist."
She states, “November and December have been very trying months for me. My disease results in extreme fatigue and energy and the energy I spend talking with individuals at 1- 800 numbers over and over again receiving conflicting messages, delays in receiving medications and emotional stress have truly taken its toll. I’m not alone in my fight being forced to use the PBMs insures own or affiliated pharmacies. Across the years, through my battle with cancer, I have come across many others who are facing the same struggles. Many who have become friends”
She goes onto mention the other ways that patients are trying to get their meds or treatments. Some have chosen to get medications through back channels or homeopathic methods.
“Sadly, Some are no longer here with us.”
"So I ask you, What value do we put on human life? What value? Wouldn’t it be great if we had a chance to work a pharmacy of our own choosing and not one that is being mandated by the PBMs? One that we could actually speak with a pharmacist face to face. One that would offer patient care regarding our meds, including both over the counter and specialty medications. One that we trust and we feel safe and feel confident in. Think about it. One-stop shopping with all of my medications being managed in one system."
Next, pharmacist Jennifer Shannon spoke and shared horrifying experiences with patients forced to mail-order. She starts off by saying that although Katie’s story “is horrifying it is not unique. I see this every day in my own practice."
PBM's pharmacies claim that they are trained in disease management. She states, “however, I sometimes wonder if there is even a pharmacist in their building? They are forcing patients who are fighting for their lives to keep fighting to get their medications.”
Nikki Bryant, another pharmacist, cited the lack of fair reimbursements. She informs that she’s not being reimbursed above the costs of many medications. This is putting her pharmacy and patients at risk. She offers delivery within a rural area. Her pharmacy is in what is known as a healthcare desert where there are few providers.
Nikki referred to a lobbyist in a prior meeting who arrogantly stated, “The person who holds the gold makes the rules.”
Then, Jocelyn Rodriguez, patient, and caregiver state that she often has to pay out of pocket for medications, despite having insurance just in order to receive her and her family’s medications safely. She realizes that the struggles that her family faces are common upon other working-class families.
These stories are heartbreaking, but thank you to those who were brave enough to speak out!
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