Many regulators are failing to protect patients from the issues with forced mail order pharmacy due to the fact that most pharmacists in some way get paid by the insurance companies that have merged with mail order pharmacies, so I contacted the FBI last week. I encourage others to do the same.
The FBI asked, "What crime was committed?"
The definition of neglect is "failure to care for properly."
The definition of abuse (something) to bad effect or for a bad purpose; misuse.
When the FBI representative in charge of handling my complaint questioned, "What crime was being committed?" I was taken aback. It's the very same offense that would occur if I purposefully subjected my son's medications to extreme conditions, like placing them in an oven or freezing them, despite knowing that the drug manufacturer explicitly warns that such actions could render the medications harmful or less effective.
The public reaction to such deliberate mistreatment of medications would likely be one of outrage. It would undoubtedly be deemed as a case of abuse and neglect. Despite these corporations being among the wealthiest in our nation and seemingly getting away with such mistreatment of the most vulnerable, it does not diminish the fact that it is, at its core, a form of abuse and neglect. No ordinary person would be allowed to escape accountability for endangering lives to this extent.
Recently, my husband's employer was forcing us to CVS mail order pharmacy for my son's life-saving medications.
I contacted the pharmacy to inquire about any updates in their policies over the past five years regarding the secure delivery of medications. My son's prescription requires room temperature storage, explicitly stating it should not freeze and should not exceed 86°F. I inquired about the specific measures they take to store medications in transit.
Unfortunately, they indicated that they will not offer protection against extreme heat or freezing during the delivery process.
In the last 5 years, nothing has changed in the way they handle prescription medications, and I called several times to ask many pharmacists.
Next, I asked the pharmacist to call the manufacturer of my son's medication, Cellcept, as there are rare circumstances where a drug manufacturer may do additional stability testing of medications to see if they can withstand freezing temperatures or temperatures up to 120-170°F that medications can reach when stored in a hot non-temperature controlled truck or mailbox. That level of testing is not required. (I encourage other patients to do the same. Ask what exact temperature your medication has been tested and studies up to. Try to get proof as they've been trained to distract, deceive, and use blanket statements.)
The pharmacist called the drug manufacturer and confirmed that there is no additional stability data for the medication beyond what is listed on the bottle.
As a mother, I couldn't use the pharmacy knowing that the medication had not been proven safe in the extreme temperatures that they would be left unprotected from. My son is a liver transplant survivor who received a gift of life from a 3-year-old little girl. It would be neglectful for me to risk his life like this, but they were giving me no other option as it was the only option of coverage. I was being forced to risk his life.
For those who don't know how I became an advocate, I once tried mail order pharmacy and they delivered my son's meds on a 102-degree day in only a bag. Soon after, he went into transplant rejection. That was when I first alerted that the temperatures of mail order pharmacies were left unregulated.
I felt the way many other supporters of this petition and patients felt. Frustrated, fearful, helplessness, and powerlessness.
Alone, I do not have faith in regulators, legislators, and government agencies to save patients and protect them from harm. I only believe that we will create change by uniting together as community members, patients, caregivers, and a small handful of brave people in the industry working mostly behind the scenes as they fear retaliation.
Pharmacists and major associations hesitate to address this issue openly, with only a few providing us support behind the scenes due to concerns about potential retaliation. Mail order pharmacists, in particular, fear job loss if they speak out. If you are a mail order pharmacist, please consider becoming a whistle-blower. Independent pharmacists, mainly affiliated with small, locally owned pharmacies, have reported facing punitive audits after raising concerns. This is because they receive a significant portion (about 80%) of their reimbursements from pharmacy benefit managers like Optum RX, CVS Caremark, and Express Scripts, which also own their own mail order pharmacies.
Yet, I hang onto hope and the .000009% chance that what is right will prevail. As long as we're trying, there is still hope.
Thank you to those who offer continued support,
Loretta Boesing, Patient Advocate
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