Secretive drug price negotiations on Lorviqua torture patients

The drug price negotiations for Pfizer's third-generation ALK-positive lung cancer drug Lorviqua (lorlatinib) are being done in excessive secrecy, leading to growing frustration among patients waiting for its reimbursement.

Lorviqua was not on the list of drugs that have completed drug price negotiations released by the National Health Insurance Service (NHIS) on Thursday.

On Jan. 11, an agenda item to expand Lorviqua's insurance benefits passed the Health Insurance Review and Evaluation Service (HIRA)'s Pharmaceutical Reimbursement Evaluation Committee (PREC) as “conditional” and entered the drug price negotiation stage with the NHIS. However, the results of the negotiations are still not publicly available three months after that.

Patients who know that the drug price negotiation period is 60 business days have effectively given up, but they seem to be hanging on the last string of hope.

After Korea Biomedical Review reported the case in late March, the pharmaceutical company received inquiries from patients asking about the outcome of Lorviqua’s drug price negotiations. However, all they were told was that "drug price negotiations with the NHIS are still going on."

Frustrated patients turned to the NHIS’s website but could not find any information on the negotiations for the drug they were waiting for.

This paper also requested an answer from the NHIS about the "start date" and "expiration date" of Lorviqua’s drug price negotiations based on the complaints it received from patients after the report. Still, the NHIS has maintained that it "cannot provide information.

As the pharmaceutical company and NHIS remain tight-lipped, patients and their families are experiencing life-or-death moments without a set deadline.

Lorviqua, of course, is not the only treatment option currently available for the first-line treatment of advanced or metastatic ALK-positive NSCLC. Roche's Alecensa (alectinib) and Takeda's Alunbrig (brigatinib), two previously developed second-generation agents, are on the market and in use.

However, Lorviqua's superior effectiveness on the central nervous system has made it the preferred first-line treatment for patients with significantly advanced brain metastases. These patients have significantly worse quality of life and survival and are less likely to have the opportunity for second-line treatment, so the most effective agent is chosen for first-line treatment.

To put it the other way around, many of the patients waiting for Lorviqua’s reimbursement are likely to have brain metastases with a poor prognosis. They are either paying for the drug out of pocket or are considering abandoning treatment due to unaffordable drug costs.

"Patients and families are anxious and desperate every day to find out when this drug will be covered, but the process is so complicated, and we have no way of knowing," one patient wrote in an email, "It feels like we are waiting for a death sentence every day."