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Has your care been delayed due to mandatory white bagging?

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Jessica

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Jessica’s story.

I was diagnosed with Triple Negative Stage 1B breast cancer on February 22nd at the age of 39. My protocol was intended to include 8 rounds of chemotherapy, followed by a bilateral mastectomy, and 6 weeks of radiation. The first four rounds of my chemo were the strongest chemo drug they make – Adriamycin. I was given a “dense dose” protocol because my insurance had pre-approved the use of a white blood cell boosting shot called pegfilgratism (Neulasta/UNDEYCA). With the shot, my chemo could be given at 2-week intervals; without it at minimum every three weeks.

After two treatments my insurance provider decided to stop covering the shot at the hospital and wanted to mail the pegfilgratism directly to my home to administer to myself – which my oncologist deemed extremely unsafe. My last two doses of Adriamycin were able to be given with the pefilgratism after much negotiation with my insurance, but are no longer covered for my last 4 doses of chemo called Taxol. That treatment will now go from 4 doses over an 8 week period to 12 doses weekly for 12 weeks. That’s if my levels are good enough week to week.

My surgery, radiation, and my opportunity to “ring” the cancer free bell has been extended at minimum 4-6 weeks because my insurance company wants more money for themselves. What’s most disheartening and aggravating is that the only people who lose in this scenario are people like me – people with cancer – who are really sick and not only need these drugs to conquer cancer – but they need these drugs to SURVIVE.

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Jason's story.

For anyone living with a rare autoimmune disease, the fear of relapse is always at the forefront. Surrounding yourself with the right care team is paramount. I consider myself lucky to have a top neurologist and oncology team that, for the past eight years, have implemented a plan that has kept me relapse free. Because of a white bagging attempt by my insurance company last week, that plan was thrown into disarray.

To prevent relapses with my disease, I receive four chemotherapy infusions per year, two in December and two in June, at a hospital cancer center in Indianapolis. I have never had an issue authorizing treatments during this time, but that all changed last week.  I had already received my first infusion 12 days prior and was due to go back on Friday of last week for my final treatment for this cycle. Late in the day on Wednesday, my nurse practitioner called to tell me that insurance had denied the pre-authorization and would only approve in-home infusions which, to my knowledge, none of the local cancer centers provide. They said that I could appeal the decision and that process would take about a month from start to finish. The insurance company even denied a peer-to-peer review requested by my care team.

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An immediate sense of panic and betrayal set in. Why the insurance company would do this in the middle of my cycle made no logical sense. What had changed in the 12 days that passed since my last treatment? If they had done any sort of in-depth review of my file, they would see that my infusions are extremely regimented. By not sticking to the precise schedule of infusions, the insurance company was willing to put my health at risk and open the door to a potential relapse that would cost them a lengthy hospital stay, rehab, and ultimately, another dose of the medication they had denied. Additionally, if the insurance company had studied my file, they would have also seen that I have had a past allergic reaction to the chemotherapy. Because that occurred in a hospital setting, the doctors and nurses were able to take immediate action to counteract the reaction and get it under control. What would happen if I had a reaction during an in-home treatment? I fear that I would not be as lucky. A person’s home is also not a sterile environment. When proposing in-home treatment, does the insurer anticipate that patients know the safe way to handle and store the drugs? Until recently, the drug administered for my condition required a full gowning up of the medical staff, but are they now saying that it would be safe for me to expose my family and pets to this same substance?

After receiving the insurance company’s denial, I spent about five hours on the phone over the course of a 24-hour period with them going from department to department, each wanting to pass the buck to the next person. We were finally able to do a four-way call with an insurance company representative, a supervisor in pre-authorization, myself, and a member of my care team from my hospital. After reinforcing the need for the regimented schedule and the possibility of an allergic reaction, the insurance company finally approved the infusion, less than a day before my treatment was scheduled.

I cannot thank my hospital enough for being a valuable advocate in my care.  My fear is that other patients just accept whatever coverage decisions the insurance company makes, and they do not have a good advocate to fight for what’s best for the patient.  My insurer states on their website that they offer “quality care that you deserve.” I had to fight hard alongside my care team to get the care I deserved. My insurance company put themselves first, along with profits—not what was best for me. White bagging needs to stop. I hope Indiana will do the right thing and put the health of its citizens first.

More Stories

“Every chemotherapy patient whose insurance requires white bagging has seen a delay, with five patients experiencing a delay of a week or more. One patient’s medication was delayed more than three weeks due to the inefficient white bagging process our team is required to follow.”

Liz Nurse in Batesville

“Our concern about white bagging is that we’re no longer able to monitor each hand that handles the medication. Representatives from pharmacies outside our health system who aren’t familiar with our hospital have been known to leave the medications unattended with the patients’ information.

Our hospital had seven specific documented instances of specialty pharmacy deliveries not fully completed, including a package left outside the hospital department and not with any hospital personnel. If we can’t say the medicine is safe, we have an obligation not to give it to the patient.”

Kelsey Oncology Pharmacist Practitioner in Columbus

“Eight cancer patients were impacted when these new policies went into effect. Not a single one of them was able to get the drug. We attempted to adhere to the policy and did everything asked of us by the specialty pharmacy, only to be left waiting for drugs that never came.”

Perry Hospital Administrator in Logansport

“It just breaks your heart. So far, I have personally dealt with three different cancer patients where we were told the pharmacy would deliver the medication on specific dates, but they didn’t come and in some cases still haven’t. I have spent hours calling and trying to communicate with them.

I’m treated as if they never heard of the patient, nothing was in process, and they say more paperwork to be done without ever communicating that to me. We are not talking about Aspirin; we are talking about something that’s very critical.”

Chuck Oncology Pharmacy Supervisor in Greenfield

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