It's my worst fear at a time when Wesley's condition isn't the best. I wish this wasn't a fight we must take on right now. 

When my husband's prior employer was bought out, not long after, the large corporation that bought the company chose to move much of the work overseas. Due to our advocacy, we received "special treatment" at the prior employer and were allowed an override to get his meds locally after Media reported on the issue. I knew eventually, the special treatment could end, so I continued my advocacy to ensure patients like my son would have safe options to access medications not just for today but forever.

He found a job at another local employer and enjoys the workplace environment. I've been terrified of this moment of determining if we will be forced to mail order, knowing that there is no running away from the monopolized industry. Many large employers require medications that pharmacy benefit managers or PBMs label as specialty medication to be forced to mail order. 

Labeling medications as specialty medications so PBMs such as Optum RX, CVS Caremark, and Express Scripts can force to their own mail order has become quite a lucrative way of PBMs to make a lot of money. With a $0 or low copay, PBMs have been caught reimbursing themselves many times over the actual cost of a drug in a practice called spread pricing. This has been reported many times, even in taxpayer-funded health plans such as Medicaid. The last time we were forced to mail order the PBM reimbursed their own pharmacy over ten times what they reimbursed the local pharmacy, all under the disguise of a lower copay. 

I'd argue that the only thing special about specialty drugs from PBM pharmacies is how they've been able to get by with the price-gouging, improper storage of medications, and delays. 

This so-called specialty medication is located at our local independent pharmacy and hospital pharmacy that safely stores or delivers medications in temperature-controlled vehicles. Still, the employer chose a plan that would only allow traditional mail order for meds like my son is on. 

Of course, I said no. We can't do that. Finally, I was told that we could use CVS local retail ONLY. What would most likely happen is they would ship from CVS Specialty to CVS retail store. In the past, when I asked a pharmacist how they would ship the medications from CVS Specialty to CVS Retail, I was told that they would ship it the same way in a non-temperature-controlled vehicle in packaging that would not protect it from the high heat. 

I said, "No." I cannot do this for my son. I was told this is a specialty drug that can only be obtained at a specialty pharmacy. I pushed back. No. That's not true. Many local independent and hospital pharmacies have or can have the medication in stock. It's never been a problem for our family to obtain the meds safely there. 

Additionally, a lobbyist for CVS stated at the Oklahoma Board of Pharmacy Meeting that they receive meds that are hot to touch and admitted that they then further ship these medications without protection. Per the FDA, if CVS is receiving meds that are hot to touch, they should report the incident to the FDA. 

As parents and patients, we should be allowed to protect medications from extreme heat as much as possible. 

CVS has also been in the news headlines for understaffing. I've lost count of the number of patients and pharmacists that have told me horror stories of patients getting the wrong medications due to understaffing. 

So, I knew what I must do. I must fight for Wesley like I have been fighting for patients. 

I called the number on the back of the card for pharmacy benefits. I just told them that we cannot do mail order. I explained the fraud and risk to life for patients forced to mail order and shared my son's story. They told me to call the member benefits number on the card. I called. I was transferred to a fraud hotline. This was probably close to what we needed, but they couldn't help. I was transferred again, pleading for an override to use a pharmacy that would protect my son's meds from the high heat. Finally, two hours and four calls later, I was able to request the override. 

Right now, the request is being reviewed. We have not received an override yet. I don't know if we will. 

I am working with a reporter right now and will make the reporter aware of what is happening. 

I don't believe it is the employers' fault. Many employers are heavily steered into these plans that force them to PBM-owned mail order or retail pharmacies. 

Many employers take this forcing to PBM-owned pharmacies as employers are unaware of the risks to patients' lives due to delays and improper temperature control. Most employees don't complain to employers about the many issues with mail order or understaffing at the pharmacy they are forced to, because it's scary to do. We are taught to comply. Just the simple ask for an override is scary. I'm afraid the ask alone could cause my husband to be terminated. I imagine other patients have similar fears. 

As much as I am afraid, I must demand ethical treatment for my son and take a stand for him alongside other patients. Forced mail order pharmacy is not ethical. It's abusive, harmful, and neglectful and should never be allowed in the first place. 

If we don't take the risks of speaking up for our son and other patients' lives to our employers, the monopolized industry only becomes further monopolized. We continue to lose local pharmacies that are critical to public health to the point that in some areas now in the US patients must drive over 50 miles to a local pharmacy or use mail order. 

I'm undoubtedly afraid right now. When I first entered the workforce over 20 years ago, getting a new job was exciting because the employers offered great insurance. Today, most employers and patients in the US are strongarmed into selecting these types of plans. Starting a new job and getting health insurance is no longer exciting. It's terrifying for parents of children with chronic conditions.

As states try to pass regulations for patients' choice of pharmacy for employer-sponsored plans, the PBMs, and their lobbyists refuse to allow states that right as they will take the fight to court and claim that they have a right to force patients to their 1-star rated mail order pharmacy that risks lives with delays and temperature control. This happened just last week in Oklahoma. I imagine this ruling by the Court will go to the Supreme Court, which in the past has ruled in favor of the State that has passed laws to protect its citizens from abusive practices of Optum RX, CVS Caremark, and Express Scripts. 

Thank you for your support, 

Loretta Boesing, Patient Advocate

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loretta@uniteforsafemeds.com