Safe Access to Medications & Pharmacists For All

"I don't want my son to have to receive special treatment," Boesing says. "I want everyone to have access to safe medications."

I have laid most of my career as a health insurance agent & consultant aside to become a patient advocate and speak on behalf of thousands. The more money I can raise, the more I will be able to raise awareness & travel across our nation to tell the stories and issues of the thousands of patients whom I now speak for.  Laws must change to ensure profits are not coming before patients.

You can read about our story in the NPR article link here: 
NPR article about our story 


 
My son received a  liver transplant at the age of two. Our family was recently forced to only use mail-order pharmacy for my son's life-saving liver transplant medications. I tried mail-order in the past. The medications arrived on a 102-degree day without anything to protect his medications from the high heat. Afterward, my son went into transplant rejection and his life was almost taken from us. I promised myself to never again use mail-order pharmacy unless it was proven safe.

Most recently, like millions of other Americans, our family was forced to only use mail-order pharmacy. There was not an opt-out option. Our only option was to use mail-order or pay 100% of the cost. My son's medications arrived again on a hot day in only a bag after begging for an ice pack. My mission began to ensure that mail-order is safe. Upon contacting the manufacturer who does stability testing, the manufacturer suggested discarding the medications after exposure to the high heat and informed me that his medications shouldn’t be placed next to an ice pack either as freezing could also cause medications to lose potency. Why did no one warn me or any of the other patients?  I contacted the mail-order pharmacy and they said to continue using the medication. His labs elevated again two weeks after receiving the medications.

Research indicated that the trucks could reach temperatures of up to 170 degrees. I connected with Theresa Klenk who has a petition to air condition the back of the UPS trucks. Her husband had a stroke after the scorching temperatures from the back of the hot trucks. She has several pictures of the trucks reaching over 120 degrees in the storage area. Studies indicated that mail-boxes reach up to 150 degrees.

I quickly realized that the proof that my son’s medications were safe in only a bag in temperatures of up to 170 degrees was nonexistent as the FDA, USP, pharmacists, medical chemist, manufacturer all stated the medications should be kept at the temperatures suggested and proven safe by the manufacturer. The only ones saying it was safe was the mail-order pharmacy.

The FDA representative stated that they receive these calls every summer and winter, but the FDA does not regulate the mail-order pharmacy as mail-order pharmacy is regulated under the State Boards of Pharmacy.

USP writes universal guidelines that the FDA often refers to in its own laws. I was told several times that the mail-order pharmacy was going by USP guidelines, so I reached out to USP.  I was thankful when I received written communications from USP recommending that the mail-order pharmacy should adhere to the 59-86 degree range that my son’s medications states is safe during excursions.

After connecting with an expert medical chemist, there are issues beyond just potency. The medical chemist said that medications can become toxic and issues with bioavailability also occur.

As a mother, if I disregarded manufacturer’s recommendations that it is unsafe and continued to put my child's life-saving medication on a hot truck after the manufacturer told me not to as they could lose potency, I couldn't begin to imagine what would happen to me.

I am now beginning to fight as hard as I can against forced mail-order pharmacy for not just my son but for at least about 78,000 supporters of a change.org petition. This issue goes far beyond just temperatures. There is a lack of face to face interaction with a pharmacist for our elderly and patients with chronic conditions. Also, life-threatening delays are happening every day. In the past, patients could receive medications in 30 minutes, but now are now taking several days to process and receive. My son’s transplant nurse states this is a major issue for many of her patients. An ER nurse recently told me that they see patients frequently at the ER due to not receiving their medications.

I am overwhelmed by the amount of support that I have received from patients and pharmacists who agree that this is an issue. After connecting with pharmacists, I learned of the unfair reimbursements. I found out that the PBM paid my sons pharmacy about $12 for a medication that they reimbursed their own pharmacy about $180.

Corporations are held to different standards of not just caregivers but independent and hospital pharmacies. Regulators must ensure that patients come first and we need regulators to protect their voters and all patients. I will fight alongside our pharmacist, caregivers, patients, physicians, and legislatures fiercely against forced/steered mail order pharmacy until these issues are resolved and patients have the options to receive their medications the safest way, and to ensure that people's lives are not threatened as the delivery trucks reach up to 170 degrees. 

Any help is appreciated and I promise will go to supporting me and the many patients that I will fiercely fight for until we win this battle to improve the future of pharmaceutical care. You will be able to see my hard work every day by following the petition, visiting my issues with mail-order pharmacy facebook page, and twitter page @BoesingLoretta. 

If you are interested in speaking to your legislatures about these issues, please refer to Virginia's HB 2223. They have a wonderful proposed bill that would help fix many of these issues.

If you are unable to donate, you may also support us by signing and sharing the change.org petition 
Thank you very much,

-Loretta Boesing, Patient Advocate