It’s been almost two decades since I heard the words “breast cancer” come out of my doctor’s mouth. I was diagnosed with triple-negative breast cancer, a particularly hard-to-treat type with low survival rates and limited treatment options.
During my second round of chemotherapy, I vowed that if I survived, I would start an organization to advocate for women like me. Today, my organization, Tigerlily Foundation, does just that. We envision a future in which cancer is no longer a death sentence for so many, but rather a treatable condition.
Recently, Virginia legislators sought to pass a law that would have stifled that dream — all while exacerbating health inequities. Thankfully, Gov. Glenn Youngkin vetoed that bill with just hours to go before the deadline.
The legislation would have established a state-run “prescription drug affordability board,” or PDAB. The well-meaning goal was to lower drug prices, which is something we support. But the board would have gone about it in the wrong way.
Under the legislation, the PDAB would have been composed of five unelected officials charged with reviewing the prices of high-cost prescription medicines. Should those officials have determined that the price of a medication posed an “affordability challenge” for patients or the health care system, they could have capped reimbursement to any physician, hospital or pharmacist providing the drug to patients.
Put another way, five political appointees would have had the power to decide if a lifesaving medicine was worth paying for. Pharmacies would have had no choice but to stop stocking some drugs.
Additionally, some proposed PDAB “cost savings” would have gone to the state, not patients. They would have continued to be charged the same copays, while the state squeezed providers with lower reimbursements.
Such an outcome would have been devastating for Virginia women who, like me, only had limited cancer treatment options available to begin with. For those diagnosed with triple-negative breast cancer, time is short. If I hadn’t had quick access to the treatment prescribed by my doctors, there’s no telling if I would still be here today.
In the long term, the consequences of instituting a price-setting board could have been even more grave. By imposing an artificial “upper payment limit” on drug prices, the PDAB would have also capped revenue for manufacturers, depriving them of the cash needed to invest in further research, development and clinical trials. Innovation would have slowed, with any hope for more treatments declining along with it.
We are already working tirelessly towards a more equitable system. Black women die of breast cancer at higher rates than their white counterparts. Black Americans and other people of color remain underrepresented in clinical trials, and as a result do not have enough treatment options designed for our bodies, which may contribute to higher mortality rates. Slowing innovation would disproportionately affect people of color.
Despite the governor’s bold veto, we may not be out of the woods. Activist groups such as Freedom Virginia have already vowed to try to bring back a version of the same legislation in 2025. And efforts extend beyond Virginia. Eight states have established PDABs in recent years, and roughly as many are considering creating their own boards.
It’s possible to lower out-of-pocket costs for patients without sacrificing life-science innovation. Youngkin took another step in the right direction by signing legislation that regulates pharmacy benefit managers, middlemen in the drug supply chain who drive up costs for patients while lining their own pockets.
I know firsthand what it’s like to feel hopeless in the face of a devastating diagnosis. I wouldn’t wish it on anyone. That’s why I’m cheering Gov. Youngkin for his 11th-hour action.
Maimah Karmo of Reston is a breast cancer survivor and is the founder and CEO of Tigerlily Foundation, a national women’s health and oncology organization.
