As a young adult living with cystic fibrosis, the cost of my medications poses a significant threat to my ability to thrive into adulthood. I look forward to the day when state Prescription Drug Affordability Boards (PDABs) and other health policy reforms are commonplace.

Other pharma-driven “patient advocates” who oppose PDABs do not speak for the entire CF community.

Last month, controversy arose at the North American Cystic Fibrosis Conference, though I wasn’t in attendance. Only one person with cystic fibrosis is officially invited to participate in person, as CF patients are at risk of cross-infecting each other with the opportunistic bacteria in their lungs. For me to go would have been even riskier still – I have one “rare” and one “nonsense” mutation that are collectively impervious to Trikafta, Vertex Pharmaceutical’s life-changing drug that gained FDA approval in 2019. I fall into the final 10% of CF patients still awaiting their breakthrough treatment.

If I had attended, I would have joined the multi-day protest led by Vertex Save Us, a grassroots advocacy organization committed to achieving global access to Trikafta, especially in developing countries where the drug has yet to come onto the market. On the home front, Vertex hasn’t done much better; the company’s decision to decrease its copay assistance program for people with CF sparked an intense controversy last year.

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Now there’s another controversy: the policy positions of some cystic fibrosis patient advocates mirror those of the pharmaceutical industry with alarming frequency. Gunnar Esiason, who has recently condemned Colorado’s PDAB for its decision to review the affordability of Trikafta, which he threatens will then drive Vertex away and deny patients access to the treatment, is just one example. His assessment sounds like Vertex’s talking points.

We cannot allow Vertex and other drug companies to set prices unilaterally and enable them to hold us hostage by the fear they will pull the drug from the market rather than decrease their monopolistic profit margins even slightly.

Trikafta, priced north of $300,000 per-patient, per-year, will earn Vertex upward of $151 billion in the U.S. alone before its patent expires in 2037. And there’s reason to believe the drug company’s monopoly might last even longer: Vertex also has another iron in the drug-approval fire (Vanzacaftor), which would supplant Trikafta while bringing new patents and new exclusivity provisions that will likely extend its dominance in the field.

Trikafta is a cash cow for Vertex. The drug company has already seen a huge return on their investment, and they’ll continue to rake in inordinate sums for years to come. Though some of the profit will go toward research, much will go to shareholders who have already reaped hefty rewards.

Colorado’s selection of Trikafta as one of the first five drugs subject to review by its PDAB should come as no surprise; the state spent more on Trikafta ($75.9 million) than any other drug except Humira ($191.2 million) in 2021.                                          

Ultimately, there is no reason that Vertex would have to pull Trikafta out of Colorado, even if the state’s PDAB sets an upper price limit. Vertex has agency. If the drug company removes Trikafta from the market to avoid a lower price, they are choosing to harm CF patients in Colorado by forcing them to travel out of state for the drug and CF patients in other states by maintaining the status quo of high prices. This would be a bad look for an industry with an already low approval rating.

When drug companies are permitted to charge lavish sums for their drugs, the resulting financial burden gets placed on everyone through rising health care premiums. Every time premiums get more expensive, more people get priced out of health insurance.            

Rising premiums, deductibles and unreasonably priced drugs are particularly worrisome from the young-adult patient perspective. 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.                                     

I have already participated in the next iteration of research that will eventually succeed at curing CF. As a CF patient still awaiting her miracle drug, I am not worried science will fail me. I am worried society itself will fail at reining in corporate greed.

Rose Keller is a young adult living with cystic fibrosis. When not studying, she works as a part-time patient engagement intern for the Institute for Clinical and Economic Review (ICER). Rose has advocated for the needs of young-adult patients through her work with patients for Affordable Drugs, Generation Patient and the Cystic Fibrosis Foundation.