Many in the PH community rely on the Caring Voice Coalition (CVC) to assist them with co-pay costs and health insurance premiums. On the evening of Friday Dec. 1, CVC released a statement about the organization.

The statement is in line with a Nov. 29 article from Bloomberg News and with a  letter from the Department of Health and Human Services Office of the Inspector General (HHS-OIG) referenced within the Bloomberg article.

PHA understands that this is an incredibly difficult time for those in the PH community who are not able to afford treatment without financial assistance. We have already heard from many patients and caregivers who are upset, confused and afraid. We are deeply concerned for everyone struggling to figure out how they will pay for medications in 2018 and are doing everything we can to find ways to help.

Upon learning about the uncertain future of the CVC, PHA President and CEO, Brad Wong, reached out personally to the companies that manufacture pulmonary hypertension medications. All the manufacturers have said that more information will be coming soon.

A representative from United Therapeutics said, “United Therapeutics remains committed to helping those PAH patients that can benefit from our medicines get access to therapy. We are aware of the recent developments and are in the process of reviewing our current patient support programs. We will be announcing changes to our programs before the end of the year.”

A representative from Gilead said, “Gilead has and will continue to provide patients with assistance in accessing their medications in an appropriate and compliant manner through various programs.  Some of these programs are:  co-pay coupons available to only commercially-insured patients, patient assistance programs for those who have difficulty paying for their medications and who meet eligibility criteria, and educational resources helping patients understand their options to pay for their medications.”

In addition to CVC, two other non-profit organizations, Good Days and PSI, assisted some PH patients with medication costs in 2017. Currently, Good Days is re-enrolling individuals they helped previously who also have Medicare coverage. Good Days is not taking new enrollments at this time (12/4/2017). PSI is not currently accepting applications for 2018 funding.

Individuals seeking financial assistance for PH medications in 2018 may wish to contact the manufacturer that makes the drug; their specialty pharmacy; and/or the nurse coordinator at their PH specialist’s office.

At the same time, PHA will continue to seek new resources and provide updates on financial assistance for the PH community as soon as we receive them. We are committed to doing everything we can to get PH therapies into the hands of those whose lives depend on them. PH community members with questions should contact gro.noitaicossAHP@ecnarusnI or 301-565-3004 x749


Background Information

Charitable assistance organizations such as the Caring Voice Coalition must follow laws meant to ensure the fair distribution of donations regardless of which medication an individual takes for a supported condition. An investigation by the Health and Human Services Office of the Inspector General found that CVC provided information to drug manufacturers that could allow them to see whether their donations were helping that company’s customers. As a result, the OIG recently withdrew the favorable advisory opinion they had previously issued.

CVC has not made any public statements about what they will do next. They are not required to close, and may choose to continue to operate without a favorable advisory opinion. However, companies and individuals that had previously contributed money to CVC may decide that they would prefer to donate to another organization. The CVC statement says, “Our Board of Directors is evaluating this very serious matter and will determine the most appropriate path forward.”