A transplant is meant to be a second chance for patients. But for some, an ultra-rare cancer may turn this opportunity into yet another battle.
That cancer is called Epstein-Barr virus positive post-transplant lymphoproliferative disorder. And it’s the topic of “Treatment Options & Access for EBV+ PTLD,” a new white paper released by the Alliance for Patient Access’ Rare Diseases Working Group.
An Unexpected Condition
EBV+ PTLD is a fast-acting, rare form of lymphoma. It occurs in certain transplant patients who are positive for the Epstein-Barr virus. Patients can experience a wide range of symptoms, from severe abdominal pain to gastrointestinal bleeding. And, as the white paper explains, survival rates for patients who do not respond to initial treatment can be devastating.
Some treatment options are available, but no FDA-approved treatments specifically for EBV+ PTLD currently exist.
A New Treatment Option
A potential new treatment, however, is on the horizon.
Called tabelecleucel, a new drug will support the immune system’s T cells, allowing patients to combat this fast-acting disease. This treatment’s development is exciting for patients, advocates and clinicians who treat the rare cancer.
But accessing this new treatment once available may prove challenging.
Swift Policy Solutions
Certain access barriers may arise for EBV+ PTLD patients.
Prior authorization in particular poses a serious potential risk, according to the white paper. The process requires clinicians to obtain health plan approval for a prescribed medication. Submitting a prior authorization to treat a rare cancer may take up time that patients simply don’t have.
The paper also explains that cost sharing and coding challenges may hinder patients’ ability to access this new treatment when they need it.
As the working group’s clinicians explain, health plan policies must reflect providers’ expertise. Insurers should also commit to responding to prior authorization requests within a short, set timeframe so patients can benefit from potentially life-saving medication. New treatment offers unprecedented potential for the health and lives of patients with EBV+ PTLD , the paper surmises, but patients need timely access to realize those benefits.