As promised, this is the recording of my speech at the press conference last week.

Forced mail-order pharmacy is risking our lives. Optum RX, CVS Caremark and #Express Scripts are pharmacy benefit managers. Mostly, they started off as payment processors for insurance companies for payments to pharmacies. Then, they bought their own mail-order pharmacies that many patients find themselves forced to. 

"My name is Loretta Boesing. I am the founder of Unite for Safe Medications, and the mother of a child who is a transplant survivor, whose life relies on medications every 12 hours. I'm here today to represent 164,000 people who have signed a petition on Change.org to stop the forcing of mail-order pharmacy. I started the petition after being forced to mail-order pharmacy for my son’s life-saving medications and finding out the hard way that mail-order pharmacy is very risky.

Due to pharmacy benefit managers and mail-order pharmacies not warning patients about the risks with mail-order pharmacy,  I had to find out on my own that mail-order pharmacies are not regulated by the FDA and the State Boards of Pharmacy are not ensuring the protection of our medications during shipping as medications are left in only bags and without sensors in mailboxes and trucks that reach 120-170 degrees. Most medications are not protected from freezing either and even with foam coolers, medications are still arriving frozen.

After my child’s liquid oral transplant medications arrived on a 102-degree day in only a bag, my son went into transplant rejection. I almost lost my son and the gift that a 3-year-old little child that lives on inside of him whose family gave at the worst time in their lives.

After the manufacturer and the FDA told me to discard my son’s medications after shipped in such temperature extremes without protection, I found at quickly that the PBMs affiliated mail-order pharmacies were untruthful, not just to me but also to our employer upon disclosing the safety of medications in extreme temperature conditions.

Recently, we were forced to mail-order pharmacy for my son’s lifesaving medications.

Upon learning that my son’s medications wouldn’t be protected from temperature extremes and that they could not just lose potency but become toxic when exposed to extreme temperatures, I began pleading for my son’s life to CVS Caremark. Begging them to please not force me to risk his life. After over 30-40 calls, CVS Caremark wouldn’t budge. The doctor wrote an appeal to pick up meds locally. The appeal was denied and only won due to the media. The day after media shared our story, we were finally allowed to receive our medications the safest way, through the hands of our trusted hospital pharmacy that handles children’s specialty medications every day.

We were told that mail-order pharmacy would save money, but I quickly discovered that CVS Specialty Pharmacy reimbursed their own pharmacy 80% more than our local trusted pharmacy. Many other patients have cited the same.

Forced mail-order pharmacy, just like the use of drones and vending machines, isn’t about pharmaceutical care or patient safety. Forced mail-order pharmacy is about profits.

After starting the petition, I quickly gained support and learned of over 100 other risks with mail-order pharmacy other than temperatures.  Most of the patients that shared and continue to share their stories were, against their will, forced to mail-order as the only option of coverage for their life-saving medications. The stories that I hear daily are absolutely appalling.

A faulty value-based system that enables PBMs to reward their own pharmacies for meeting certain standards. These standards are not accurately measuring the costs or risks to our lives when medications are not stored properly or when medications do not arrive on time.

Yet, the PBMs and the mail-order pharmacies that many patients are being forced to are one-star or F-rated pharmacies. Sadly,  I don’t know of any other business that can continue to see record-breaking stock values with such poor quality ratings.

Again, this obvious sign that mail-order pharmacy isn’t about patients but profits.

Thousands of American lives are at risk from the abuses of PBMs and solely for nothing more than the profits of already billion-dollar corporations. Their greed has no limits. There are unnecessary delays and interruptions in treatments of medications that at one time we could have in our hands in 15 minutes. These same medications are now taking 5-7 days to process. Due to communication issues and preventable delays, MS patients have lost their ability to walk, adults and children with cancer are experiencing unnecessary interruptions in their chemotherapy treatments that could hinder patient outcomes or prevent them from beating cancer, pregnant women with diabetes are and unable to eat because their medications don't arrive on time or for other patients, insulin arrives frozen and less effective. Transplant patients like my son are going days without medications due to forced mail-order pharmacy. Patients have been injured or died due to the medication administration errors from misunderstandings that could have been prevented with the crucial face to face relationship.

Sadly, it’s only when the mail-order risks lives that they will sometimes approve a one-time override for patients to fill at a local pharmacy.

What did we do as patients to deserve to be forced to a pharmacy with a one-star or F-rating on the Better Business Bureau? What did we do to deserve to be forced to risk our lives and the lives of our children and to have the critical relationship with our trusted pharmacists removed? What did entire communities do to have their only pharmacist in the area removed from their coverage or to be forced to close due to the greed of PBMs and their unethical practices?

No one is considering where will all of these patients go when emergency fills are requested as we are seeing around our nation that our independent or locally-owned pharmacies are closing. Their closure is mostly due to the unethical acts of PBMs. The steering away from our trusted pharmacies and the low reimbursements don’t just put patients’ lives at risk but the lives of entire communities and the health of the entire nation.

Patients' lives depend on the choice of pharmacy and safe access to medications.

The issues with PBMs go beyond access. Over the last year, I’ve connected with mothers whose children have died from PBMs forcing patients to less effective medications instead of the medication that the physician prescribes. Others may have possibly lived if PBMs didn’t make them pay 100% of the list price of the drug before meeting their deductible.

PBMs and their owned or affiliated mail-order pharmacies are risking our lives.

PBMs don’t prescribe drugs, they don’t manufacture drugs, and they don’t dispense drugs – but somehow, they have figured out how to make billions of dollars off the drug marketplace at the expense of patients. As patients and caregivers, I think it’s about time we start getting the benefits we’re entitled to without having to navigate the complex hurdles that PBMs require everyone to jump through."

Please support our advocacy by making a donation. 

Share your issues or concerns with mail-order pharmacy: loretta@uniteforsafemeds.com