DATE: FRIDAY, DEC. 8, 2023
Contact: Priya Telang, ptelang@
Katie Reinisch, katie@progressive-promotions.
Doctors, patient, consumer advocates praise Prescription Drug Affordability Board’s first-ever review of high-cost medication; call to monitor patient assistance programs
DENVER – Coloradans know that life-saving drugs only work when people can afford them. This afternoon, consumer advocates responded to today’s meeting of the Prescription Drug Affordability Board (PDAB) – the first time in the nation that such a board released the results of a months-long review of a high-cost medication, deciding if it is “affordable.”
The costs of prescription drugs rose by 159% over 10 years and Americans continue to pay 65%-85% more for critical medications than people in other countries. That’s why Colorado created a PDAB in 2021 to evaluate the affordability of the most expensive prescription drugs and, if determined unaffordable, set an upper payment limit to bring down the cost. Today, the PDAB completed its first affordability review of one of the five medications they are evaluating this year – Trikafta, which treats Cystic Fibrosis.
Today, the PDAB voted on the affordability of Trikafta, deeming it affordable for patients in Colorado. Trikafta is not eligible for an upper payment limit as a result of this determination, and the Board will move on to the next round of affordability reviews. The Board noted that Trikafta is specifically affordable through patient assistance programs, a practice they acknowledged as unreliable and inconsistent. They are open to revisiting the affordability of Trikafta if circumstances change and if current patient assistance programs are weakened.
Hope Stonner, Policy Manager of the Colorado Consumer Health Initiative said: “Trikafta, by all accounts, is a life-saving, life-changing drug for Cystic Fibrosis patients. As we have heard through testimony in PDAB meetings, it has changed the lives of CF patients who are eligible for the drug. But the results of the review have also provided critical insight into how Vertex is profiting off of this lifesaving medication. Importantly, we must monitor their patient assistance programs.”
“Doctors are grateful that financial assistance programs, like the ones that help many cystic fibrosis patients afford Trikafta, exist,” said Dr. Yolanda Bogaert, a nephrologist in Wheat Ridge and a member of the Committee to Protect Health Care. “But at the end of the day, they shouldn’t have to. Patients who are just trying to live shouldn’t have to spend hours negotiating with drug companies, begging to afford the drugs they need to live. And consumers across Colorado shouldn’t have to shoulder the burden of higher health care premiums due to greedy pharmaceutical corporations.”
Last week, the PDAB released the affordability review summary report detailing the process the Board went through for the review and providing transparency into the cost of Trikafta and its manufacturer Vertex. The report found that Vertex’s profits have increased since 2019 (Appendix O), that the manufacturer’s patient assistance programs are not required or guaranteed, that there are no guidelines for who is eligible for assistance (page 22), and that the high cost of Trikafta is contributing to increases in health insurance premiums (page 2). The report also highlighted that out-of-pocket costs varied widely, with 51% paying less than $50 a month and others paying as much as $22,700 per month (page 2).
“Doctors trust that the Prescription Drug Affordability Board is working just as intended, and today’s outcome shows that,” said Dr. Chet Cedars, a retired family medicine physician and a member of the Committee to Protect Health Care from Greenwood Village. “It also shows what doctors have known for a long time: that we need more transparency in the pharmaceutical industry. We look forward to the Board reviewing four more drugs in the coming months and, if deemed unaffordable, setting upper payment limits on them so patients can afford their medications.”
“We are encouraged by the board’s stated concerns with the dependence on patient assistance programs to access Trikafta. We note that the board has stated interest in revisiting this drug should circumstances change for patients,” continued Stonner. “The Board must set upper payment limits for any drugs deemed unaffordable in the future. The Board is an invaluable tool to help us rein in rising prescription costs and premiums, and we look forward to the next four reviews.”
“Rising premiums, deductibles, and unreasonably priced drugs are particularly worrisome from the young adult patient perspective,” said Rose Keller, a patient with cystic fibrosis and member of Generation Patient. “Very few of us have the financial stability to afford expensive drugs, many of which we will need to be on for our entire lives. Now that this decision is made, we need to let the Prescription Drug Affordability Board review the other 4 expensive drugs – without Big Pharma’s interference – and commit to keeping costs down and saving patients money. Patients like myself can’t use medications, no matter how vital they are, if we can’t afford them.”
NOTE: a recording of the press conference is available upon request
Colorado Consumer Health Initiative is a nonpartisan, nonprofit, membership-based group advocating for equitable access to high-quality, affordable health care. CCHI serves Coloradans whose access to health care and financial security are compromised by structural barriers, affordability, poor benefits, or unfair business practices of the health care industry.
Committee to Protect Health Care is a national mobilization of health care professionals who are building a pro-patient health care majority in Congress and the States – holding the line for health care reform that works for patients so that we can live in a United States where everyone has the health care they need to thrive.