Access is Critical for Upcoming Rare Cancer Treatment, Physicians' Paper Explains

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Oct 26, 2022, 09:00 ET

Transplant patients with an ultra-rare cancer, EBV+ PTLD, may soon have their first FDA-approved treatment

WASHINGTON, Oct. 26, 2022 /PRNewswire/ -- Transplant patients who develop an ultra-rare form of lymphoma will need timely access to a forthcoming treatment, physicians explain in a new white paper from the Alliance for Patient Access. As "Treatment Options & Access for EBV+ PTLD" notes, the drug, called tabelecleucel, will be the first treatment approved by the FDA specifically for EBV+ PTLD, or Epstein-Barr virus positive post-transplant lymphoproliferative disorder.

The new treatment offers hope to many patients and families, the paper's physician authors explain. They caution against onerous insurance prior authorization and prohibitive cost-sharing practices that could make access to the life-saving treatment difficult.

"These patients have already gone through the harrowing experience of failure of an organ, then the joy of getting an organ transplant, followed by the shock of knowing they now have a cancer," Vikas Dharnidharka, MD, MPH, emphasizes in the paper.

About EBV+ PTLD

The rare cancer affects patients who have received a solid organ transplant or a hematopoietic cell transplant. Potentially deadly and fast-moving, EBV+ PTLD has devastating survival rates for patients who do not respond to treatment, which has previously included off-label use of drugs developed for other conditions.

Only a few hundred cases of EBV+ PTLD are diagnosed in the United States each year. In a situation that's already life-or-death, patients often face down challenges rooted in undereducation, delayed diagnosis and health plan coverage logistics.

READ THE WHITE PAPER

About the Alliance for Patient Access

The Alliance for Patient Access is a network of policy-minded health care providers who advocate for patient-centered care. Clinician members of AfPA's Rare Diseases Working Group authored this paper.

SOURCE Alliance for Patient Access