When patients receive a new heart, kidney, or even a stem cell transplant, they are receiving the gift of life. It should be a joyous and optimistic time, but it doesn’t stay that way for everyone.
A Rare, Post-Transplant Cancer
A very small percentage of patients will develop a condition called post-transplant lymphoproliferative disease (PTLD), often related to infection by the Epstein-Barr virus (EBV). The EBV+ PTLD is a very rare type of lymphoma. In preparation to receive a transplant, patients are given medicines to suppress their immune system so that their body will accept the new organ. But these drugs are also what allows the cancer to develop in some patients.
It’s something to keep an eye out for and, if it develops, it needs to be addressed urgently. But starting patients on the necessary treatment hardly ever happens as quickly as it should because of insurance barriers.
Prior Authorization Takes Time
The most significant barrier is prior authorization. It’s the process of obtaining an insurer’s approval before my patient with EBV+ PTLD can get necessary diagnostic tests to determine the severity of the cancer. After diagnosis, another prior authorization often follows to secure access to necessary chemotherapy treatments.
Securing a prior authorization starts with completing forms and providing records about the patient’s condition and treatment history. My first attempt is frequently denied.
I’ll appeal the denial and often have a “peer-to-peer” call to explain why my patient needs what I’ve prescribed to a representative of the insurance company, usually someone with no medical training relative to the very rare condition. It’s a time-consuming process, time that patients with EBV+ PTLD don’t have to spare.
Time is of the Essence
EBV+ PTLD can be as bad or worse than the patient’s condition that necessitated the organ transplant. It can be a fast spreading and aggressive cancer. As soon as it’s discovered, the medicines to suppress the immune system are paused and chemotherapy is usually started. But most patients’ best chance of beating the disease may come from a novel treatment that is yet to be approved by the FDA – cell therapy that attacks the EBV-infected cancer cells.
Insurers often use prior authorization to delay access to breakthrough or expensive medications, requiring patients to fail less expensive medications first. I think that barrier may be compounded for cell therapy, if it’s approved, because it will be a new treatment approach for a condition that’s poorly understood. Regardless, I won’t be deterred. Over the years, I’ve been very successful in getting the necessary approval for my patients, but it shouldn’t be so hard to try and save their lives.
Raising awareness about EBV+ PTLD and the tragedy that is patients being delayed access to life-saving therapies are necessary first steps toward changing this unfortunate reality.
