Many of my patients that are on treatment with either OFEV or Esbriet receive assistance from Caring Voices Coalition. As of the end of 2016, Caring Voices will no longer be supporting IPF patients. This has created tremendous anxiety and stress as many patients are facing a many thousand dollar out-of-pocket cost to obtain access to their IPF treatments. The reason behind the withdrawal of support from pulmonary fibrosis is unclear but may relate to a recent federal audit of the charity.
Patients currently receive the drug through specialty pharmacies. These organizations work with the drug company (either Genentech or Boehringer Ingelheim) to determine insurance coverage. Most commercial insurance programs (such as Blue Cross, Cigna, Aetna…) provide coverage with a co-pay. Patients who are not receiving Medicare or Medicaid are eligible to receive assistance from the manufacturers to limit the amount they pay out of pocket. However, patients who receive federal or state insurance coverage (Medicare/Medicaid) are not eligible for this type of assistance. Until now, Caring Voices Coalition has bridged that financial gap by giving qualified patients thousands of dollars per year.
With the withdrawal of Caring Voices, many patients are left in a precarious position. A similarly structured charitable foundation called Healthwell Foundation has emerged as an alternative. Similar eligibility criteria are likely to apply as all foundations are governed by the same federal regulations. We are still gathering experience with Healthwell Foundation.
In the past, drug manufacturers provided drugs free to patients who could not afford the medication. With changing legislation that allowed third party charities to defray the co-pay, most drug companies have scaled back their free drug programs. It remains unclear if these give-away programs will re-emerge in a larger way as the scrutiny on charitable foundations has increased.
Work with your pulmonary fibrosis physician and call your legislators. Make noise about the importance of preserving access to medications for IPF. As new information becomes available, Inspire Pulmonary Media will continue to provide updates.